Its our story...

My moment

2011-02-19T08:51:00.002-04:00

Well I have to say its a relief to have that "moment"... the moment in time when it hits you like a ton of bricks upside the head and your knocked back into reality.

Last night after several weeks of not knowing what the hell has been going on I watched Oprah and seen a story about a wonderful child who he and his family have been dealing with mental health issues and Sensory issues for a long time. His story touched me so deeply and made me think.

When Scott and I went to bed last night was talking to him about the story and I played a link on Oprah's website of the interview she did with him. It gave me so much insight into what our own child deals with and it got Scott and I talking.

To be a mother and hear some of the things that come out of her its heart breaking to say the least but the more Scott and I talked the more I understood... its not me! Its the sensory issues she deals with that are causing her such frustration and being 9 years old and not knowing how to deal with them, well of course she would react as she has.

I know she really does love me as I love her... we will get through this rough spot and get back on track. We will stand shoulder to shoulder. Neither of us will give up. Neither of us will stop fighting this battle....... we will succeed!!!!

Its been rough

2011-02-18T19:59:00.002-04:00

Its been rough... too rough some days to even talk about it... it hurts so bad to have your child tell you she doesn't love you.. to have your child say things that shouldn't come out of a 9 yr olds mouth when she finds out you are sick with the flu... its been a rough month to say the least! Maybe soon I'll have the strength to blog about it... but for now its just too painful to even put into words... therapy has been stepped up that's for sure so i know we have hope! hope again!!!!

Christmas and into the New Year

2011-01-27T06:21:00.004-04:00

Christmas was one of the most amazing times of the year for us, looking back on the past several I have to say this was the best in recent memory. It was so relaxed, calm, kids had a great time and we were all on vacation.

It was like stress free! No breakdowns, no meltdowns, no upsetting days. Christmas morning was so relaxing and enjoyable I wish everyday could be like our 2010 Christmas was and planning it to be such a slow one, such a relaxing one paid off a thousand times over... best thing ever was to allow it to just be the way it needed to be.

January has been a challenge.

Why haven't I been posting?

2010-11-29T21:45:00.002-04:00

Why haven't I been posting? Well, the answer is not that easy. See its been too stressful... excuse me I know.. me letting stress get to me!!! Yeah hard to believe isn't it.
Well it finally happened... we started a new course for our daughter, it was group therapy for her anxiety and boy did it open a can of pain on us (ok well me!) it made me see what help she really needs, how hard her daily struggles are to fit in, to be like other kids, as she would say "not to be like this anymore"... my heart broke with every therapy, with every time the conversation would come up with her about her fears and to hear it week after week after week.. well I felt like there was no end. Did it help? I sure do hope, things are quiet but not every day no. I was able to get a few days without stress during a very hard time... see my mom almost passed away from a recent surgery and I needed to spend a lot of time away from the kids to be at the hospital in ICU with mom. Sure there were a few rough days of fear from Sarah but after a few days she was able to adjust quicker? Because of the group therapy, sure it might have been. Because of my attitude that this is my mom and no matter what challenges are being dealt with at home Dad you have to step in, I need to be with mom.
Regardless of the reasons all I know is that the past month has been one of the most challenges months on record.
November is never a good month for us, we try to make happy memories but for the past 11 yrs now its been hard.
See Scott and I met 27 yrs ago in Nov. But then 11 yrs ago in Nov his best friend died very suddenly and it was rough, the following Nov we decided to get married after 17 yrs of being together. Good times and bad times we decided to make Nov the month we would make into as much fun as we could. The following year I delivered Sarah, yup.. November but within 2 days we found out we would be travelling down the road of the unknown as she was hearing impaired. We spent the next several years avoiding any Nov problems when this year we didn't... what was suppose to be a routine surgery for my Mom turned into a week in ICU, a ventilator, almost loosing her and now after a week of not being awake to find out she has cancer. Sure as Nov rolls by she's much stronger, home now and recovering so we can face her cancer together as a family.
How can one month be so happy and so sad all at the same time. I can't answer that but all we know is Nov comes and we make the best of it, the best we know how... we celebrate birthday and anniversary and we remember the hard times in Nov and be thankful for what we have....
Maybe November was put in the calender month to remind us (as Thanksgiving is in Nov!) to be thankful for what we have cause it could be gone tomorrow.
Well hopefully now that Dec is coming upon us I have more time, less stress and more energy to write some more.
Well see!

2010-10-03T08:49:00.004-03:00

I can't believe its been 3 weeks since I lost put something on here. Wow, where has the time gone by.
Well that's easy... its been busy. Besides the adjustment to school and all that brings its been busy evenings with homework and apts. and boy have the apts been coming fast and furious. Most weeks there have been 2 each week. Sure doesn't leave much time for anything else. But I need to get back on track with a few things and this is one of them.
So she started her new program, its a program that helps her learn the techniques she needs to deal with the anxiety. Week one was rough but it was a walk on the beach compared to week 2. Week 2 brought on a full blown I'll say panic attack (the dr's won't call it that but I will) she was grabbing furniture and knocking it over, kicking me and her dad, screaming... oh that blood curdle scream!, trying to run away, mad, upset... the first half hour of the session even put another mom in tears to see her react that way. Not tears of fears but tears of "omg her mom and dad, it must break your heart to see her react that way". Within no time the lead Dr of this program told me... this is more then just anxiety... there is more there! OMG what a terrible thing to hear. So she was going to get a hold of her Dr and they would be in touch... guess we wait.
But after that she was fine... the rest of the night was great, the following day was amazing and yesterday she even went to her aunt's house to bake pie!!! sure she had some nervous moments about going but overcame them and had a great time.
every time stuff like this happens it makes me so 2nd quess everything... I can get so confused... maybe that bad moment was just a moment cause look at how good she was after that... I"m so confused!
Well its early Sunday morning everyone is up and our oldest is off to his driver training so its time to get the few things done I need to do today and then it'll be time to do nothing on a sunny cool Sunday day!!!!

Sure does make you rethink....

2010-09-12T19:43:00.003-03:00

Since the end of Aug life has been busy, first there was get ready for school, then there was "omg its school already", then busy at work, then a hurricane blew in last weekend... and through all this we smiled so many times are Miss Sarah's brave moments... going out on little trips with Dad and without me... going to her aunt and uncles home for a sleep over during the hurricane power outage.. going to school and working so hard at keeping everything in her life in order. Then the what would be the smallest thing to you and I happened.. a week after school began the school decided to switch classes around. So what? Well.... omg it was one of the worse things in the world to hear your daughter call you at work in tears of absolute fear and panic. "Momma I need you" were the words she could barely get out of her own mouth. She was hyperventilating making herself want to throw up and crying like her bff passed away... it was the most heart wrenching thing to hear happen... she had been so brave a few days before that... going outside to play, going to the cafeteria to eat with the other kids... omg it was amazing to watch those good days... to have this happen! well lets say it sure does make you rethink what's important in life... Dad ran home early from work.. I came home as soon as I could.. we did nothing that night but spend it with her, holding her, comforting her... what ever she needed... her fears had reached a max, her panic had set in... and it all just made my heart sink to the floor!!! My baby girl was hurt, scared and needed her Momma and Dadda and I'm so glad we were there for her!

I'm so done...

2010-08-28T23:08:00.002-03:00

Its been a rough week to say the least.... and I'm done!

It started with us being home for 4 days which brought on anxiety about me going back to work. Then it lead into a call to me at work saying that she needed me home while she was in tears. Scott and I met with her Dr alone without her on Wednesday and we told her all that's been going on in the past month or so and she said it was time to increase her medication, school is going to be rough too and we are only days away from that.
Then to top it all off I'm having trouble with her school bus schedule and seriously think I need to go work there and show them how to do their job.
There was not one day last week that wasn't full of stress and anxiety and I'm finding its really getting to me. I usually can handle most of what life is throwing our way but most weeks I get a day or two at some point to break away from it but not this past week... nope not a day!
So in less then an hour it'll be a new week and this week is going to be nothing but good... no matter how much I'm not looking forward to her being worried about going back to school, yet so excited about going to school cause I know how difficult its going to be on her I'm so looking forward to this week being better then last week cause I'm going to make it better... I need to take control back of my days before I end up going insane!

Feeling overwhelmed!

2010-08-23T22:11:00.003-03:00

I"m feeling a little overwhelmed right about now.
See Sept is bringing on a whole bunch of worries. School starts... what will this do to her anxiety? We have a new principal and vice principal this year... oh god we have to go through all this again with the school to make sure her best interest is taken care of. She's already going to bed at night saying she doesn't want to be taken out of class for all these speech services and stuff. She is already telling me how much she's looking forward to going back to school in one breath and in another breath tells me if she needs to come home this year she's coming home.
Then to top it all off we have to book a hearing apt for her... very important she gets her checkup... she's progressive now! If we put it off.... well I won't put it off.
Then she starts her 10 week Cool Kids program... which is once a week over 16 weeks... and now before that can happen her dad and I have to attend a 2 hour meeting about it.
And we are suppose to continue her therapy apts during all this too. Then I'm suppose to see my dr again so they can find a cure for my skin problems. Someone said to me a long time ago that at least one parent of a disabled child usually ends up leaving their job to take care of all of these apts..... now I see why.
Lets pray I can figure out how to keep the two of us working while still maintaining what's best for her... I need a prayer!!!!

Just like clock work...

2010-08-06T09:16:00.003-03:00

Just as I suspected.... not as bad as it had been but it was still stressful. Last night was off and on. Up and down. Mood swings. And a bed time that didn't happen till almost 11:30.... oh boy! But in some ways it was OK cause as long as I was keeping her attention focused on an activity she seemed to have an easier time. She painted my nails for me. We hung up her new poster and glow in the dark moon and star stickers on her ceiling. But the minute I tried to do something like even cook supper she started exploding. It was easier to deal with then most nights but it was still difficult to watch her bounce around so much and toss and turn and not be able to relax and calm down. But we did it... we can do anything as long as we do it together.
Love you baby... forever and always.
Momma

Hopefully I'm wrong.....

2010-08-05T08:57:00.002-03:00

Yesterday we decided since it was raining it would be a "stay at home day" so instead of going anywhere we stayed home and cleaned. Oh her room looks so much better now. Its looking like a big girls room. We moved furniture around, traded it with furniture from other rooms and her tiny little bedroom now has so much more room and she loves it. She has things organized and neat and instead of "everything" everywhere she can now find what she loves to play with. So it came time for bed and I even let her have a piece of ice cream cake not long before bedtime and still it was a quiet evening. No acting up at all. No repeating movements. No flipping switches off and on. No jumping and bouncing off furniture just quiet bedtime as we watched TV and she drifted off to sleep.
So lets see what today has in store. See we need to take two buses downtown to a meeting I have this afternoon to discuss my interest in volunteering for the Society for the Deaf and Hard of Hearing and about me being on the board. Then I'm going to surprise her with a stop at the Discovery Center that she so wanted to go to this summer. Then its two buses home cause Dad will be late coming home tonight so we can't meet up with him.
Only time will tell how tonight will be.
I so pray I'm wrong about the excitement. I so pray. But if I'm right then its OK. I seriously believe that she needs to experience these trips we make, these fun things we do. I don't think its fair cause of a bad night she may or may not have that she misses out and stays home all the time.
I hope you have fun today baby and you aren't too mad at me that I'm surprising you with the Discovery Center after the meeting.... I hope I can keep the surprise in long enough... I want to wake you up now and tell you but I won't!
Love you forever and always
Momma

I've been thinking...

2010-08-04T09:16:00.002-03:00

Last night when I posted my blog I was so stressed out over her not being able to calm down, it was playing in my head all night long. I was awake for hours thinking about it and it came to me. I'm sure I've had this thought before but forgot it when I'm in the height of the stress of trying to get her to bed.

Its all good... see yesterday and all the other times she did something a year ago I thought would never happen... she had fun!

She played, she let the guy at the museum put a spider on her, she touched a turtle, she looked at snakes and things that crawl. She talked to people on her own. She played with other kids at the playground. She got on the bus.

A year ago that would have been impossible for her to do. I am so proud of how much she's come along. Sure for her sake I wish the evenings would be easier for her cause she feels that she can't do anything cause the night is so hard she doesn't remember how much fun the day was but that's what my job is.... keep reminding her how much fun she had and keep encouraging her to take risks to be brave... we'll do this baby.. we'll get through this together and find a way so your memories aren't all of how hard it is afterwards but instead your memories will be of how much fun it was doing it.

I love you baby....
forever and always
Momma

Ok what the hell is up with that?

2010-08-03T23:37:00.003-03:00

Ok so what the hell is up with that? What? What could be causing the uncontrollable hyper state every freakin time we go or do anything.

I've noticed in the past while any day trip we take now involves a hell of a night. One day we took her to the lake swimming. Another day we took her to a park. Another day I took her to a movie. Twice now to my sisters pool swimming and BBQ. Then today it was a trip to the local museum and community playground.

All of these days have something in common... they have to end! And as each do it brings on uncontrollable tears and a headache. Then alone time to calm her down when we get home. Then bang... its baby talk time, running around like a wild animal... it takes over an hour to calm her down, jumping off furniture, riding the dog like a horse, tormenting her brother, running around the room, jumping on the bed, refusing to go to the washroom before bed time which means I have to drag her to the bathroom and tell her over and over again to use it. Then the repeat motions start... off and on off an on off and on go to the switch for the fan.... then the tickle of the feet... the sticking her feet in my face... then poking my nose... then jump up and down on the bed... roll over... roll back... switch the fan off and on off and on off and on... poke my nose, rub my feet. The the rhyming of words starts in baby tone voice too... repeating over and over and over again all the nursery rhymes she can remember.... then off the bed... on the bed... off the bed... run to the door, jump on the bed... run to the door, jump on the bed....

Its like a broken record of excitement... like this switch has failed to work in her brain and its running over and over again.

Its dark now so I turn off all the lights and start to leave the room... on a normal day of just not wanting to lye down that would involve a huge scream not on these days... its laughter... laughter... laughter... repeating words that make no sense. Doesn't bother her one little bit.

I noticed something strange tonight too.... after we were done at the playground I told her 3 times to get ready we had to walk over to catch the bus to meet Dad and finally it was like it clicked and right in the middle of walking over to the swing to get on it and not actually listen to me to get ready it was like a light bulb moment and she said "bus, bus, bus" three times and then headed in the direction of the bus stop. I thought... that's strange how she did that! And as we were walking she was almost like pulling away from me holding her hand... then as we were walking to the bus stop along the sidewalk she stopped and started to cry... she said the bus that went by went to fast and it made her head hurt but I think it was the "drop" of excitement that hit her. She was in tears and telling me how much she was going to gag and throw up all the way to meet Dad. She then got mad at me on the bus cause I didn't tell her the seat to the right of me became free and no one would be sitting beside her... she told me sitting to the other side of me where there were people made her feel "oh I don't know Mommy just made me feel... and then she shook and shivered".

Interesting... yeah not so much.. hard to deal with... you bet! So difficult to determine.. was that bad behaviour or something else going on... that laugh is stuck in my head... that baby voice repeating those words over and over again....

What the hell was that?

A look back at the last few weeks

2010-07-25T14:17:00.004-03:00

Well I can honestly say its been a rough few weeks but this past one has been a little quieter.

See my mom got really sick. It happened to us very suddenly but it appears she's been sick for a while now.

I had planned on taking off the first week of July to spend time with the kids and that happened until that first Tuesday. I knew when my sister called me something wasn't right but I answered the phone making a joke like I always do only to find out that Mom was in the emergency with what we would later find out was a tumor on her colon.

It was rough to see your mother in so much pain, to go through major surgery, to recover so slowly but she recovered and on the road to being herself again.

But what was hard too was not being able to spend the time I had promised Sarah I would spend with her. The late nights of being up, not being able to sleep, not being able to focus on anything else!

So I've decided to take another week off work in Aug and spend some time with Miss Sarah. But
in the meantime I'm trying my best to spend some extra time with her now that things are coming back to normal. And except for a few times when her stress level was peaking she did pretty good with all the stress our family was under while Mom was in the hospital. But I can honestly say the heat and humidity didn't like her too much... she would call me at work several times a day to tell me how bad it was... at one point she asked if I could get a hold of mother nature and tell her she had to stop the sticky weather. Well I avoided laughing and told her there wasn't much anyone could do and her reply to me was "momma you don't understand you don't have to live with this everyday like I do".... that's my girl... makes Momma laugh every day.

So yesterday was my first time taking Sarah to see a movie. We went to see Romona and Beezus and it was great. I was so worried she wouldn't like it. So worried she would loose control if the noise was too hard to handle. But we did it. First we stopped to play in the game room, then off to get our popcorn and pop... then off to the theater a little early so she could find a seat she would be comfortable with and it all worked... so did it. Her hearing aids adjusted the volume for her and we got to sit for a couple of hours and just watch a great family movie.

Sadly though with kids who suffer from Anxiety also have trouble settling down so when we left the movie after being in such a high state of excitement it meant tears for no reason... tears for not remembering that she already asked a question... I always feel so bad for her when that happens but I know the experience of going to the movie.. or doing an activity is so worth it. So we immediately come home... she goes to her room and spends quiet time relaxing and laying down till things come back to her normal again... its a technique I find easier to teach her as she gets older... its almost like meditation for her and it works well... with in an hour or so she's all relaxed. Her therapist tries to get her to learn how to change the channels... but she just can't catch on to that theory but she is actually doing it by relaxing and being alone till she can calm down!!!

So today its raining and we get to spend the day pretty much doing nothing.... so this morning we watched the Wizard of Oz... the last time I tired to watch it with Sarah her anxiety was just too high and she worried about EVERYTHING that was going to happen so we had to stop the movie it was just too stressful for her to watch but now... we made it through the entire movie and it was so nice to see the ending with her.

Well its time to do some cooking for my # 1 son... he loves his momma's cooking. Then its time to do some work and then pretty much nothing the rest of the day. Tomorrow morning its back to the grind and back to pealing Sarah's arms off my neck bagging me not to go to work but for today its a lazy day and all is good.... cause we only take each day for what's its worth... never worry about tomorrow cause there's always hope that tomorrow will be as good as today!

I can only think....

2010-07-06T11:49:00.002-03:00

Its funny how things go.

A few nights ago I was thinking about what a Mommy's night out would really mean and last night I was ridden with guilt.

See it was bed time and Miss Sarah decided it was question time. The what if's. What if you and dad don't live together anymore Momma? I know its not going to happen I"m just saying she repeated to me. So I decided it was time for me to figure out where this is coming from. The questions came... do you have to get married when you get to a certain age Momma? do you have to be married forever? do you this? do you that? do you... do you? Then came the tough questions... where is your dad at Momma? Why don't your mom and dad live together?

The entire time I would give the "general" answer any Momma would give... honest as honest can be when your answering an 8 year old's questions but without bringing any fear.

Sometimes people love each other baby but they just can't live together and that will never happen to me and daddy.

Every answer I gave was positive and reinforcing her secure world and the whole time I wanted dad there in the room with us to help me reinforce what I thought was her fears that her father and I would not be together anymore but when I would ask to call Dad in she told me no... these are questions for momma only she would say.

After almost a half an hour of talking I then noticed I was wrong, she had no fear of us being together (with good reason... we've never given her any reason to believe we won't be) her fear was that I would leave, not return and not take her with me.

The guilt.... here I am thinking of taking a mommy's night thought and here my daughter is thinking Mommy's leaving and never returning... where do her thoughts come from. I've never said it. I've never joked about it. I've never threatened it. I've never said it.

Where do these fears come from? Why do they haunt her thoughts? Poor girl must have been worried about it. She's been worried that I'm leaving.... the Dr told us before these thoughts are not our reality its her reality. She may have seen something or heard a comment from someone that their mom left and her brain then takes that to the extreme and she fears, worries, obsesses about it happening to her.

I hope I reassured her that momma isn't going to leave her.

And I also made her another promise... see she had a breakdown in the morning about signing her Nanny's birthday card. Well, that's nothing new! She can never give a card to anyone but till yesterday I never knew why... PERFECTION! She tells me that someone (who will remain nameless) told her to sign her name one time neat and she wasn't making it neat!!! OH GOD had I been there to step in on that one.... you don't tell a child with OCD to be a perfectionist... no matter how well your intentions were PLEASE DON'T DO IT. So I promised that I will always sign her name to the cards... I'm there for you baby... release that stress of signing cards, it just isn't worth it. And of course... I promised till she's 55 if that's what I need to do! LOL LOL

Hope our conversation helped you last night baby... please don't worry... your 8 you don't need to worry you need to play, laugh and have fun... I'll do all the worry's for you... ok baby?

Love ya forever and always.

Made me think

2010-06-28T06:37:00.003-03:00

Last night I received an invitation to a Mom's night out at Sticky Fingers... apparently its a great place to go and relax but I haven't heard back if its ok for me to bring our girl. And that got me thinking. The invitation came as a "mommy's night". Mom's night? What's that? See I've only been out twice that I can think of in over 5 years and I'm sure if I thought longer its been even longer. Both of those times were work events that I was able to just stay late at work and attend. I've never been able to come home and then leave again and this event is on Thursday night.... well that's a holiday so I'll be home all day so if its not ok to bring her then I won't be able to attend but there are two amazing things going on.... one to help us organize all those dr apts and notes and the other one is on the Ipad... boy what that be a great thing to know if will help her.
But its all good... I'm not complaining at all... its the way life is and because of how life is I learn to adjust so if I'm not able to attend then I'll research those two ideas on my own, get input from the ones who can attend and it'll be just fine....
But boy did that invite sure make me think!

At what cost... LOL

2010-06-20T10:04:00.003-03:00

Ok so this is funny, well kind of.

So last year after I had my surgery and spent pretty much the entire year not being able to do much cause of either pain, bleeding or exhaustion I said this summer would be different. At what cost is the question...

Well two weeks ago I scraped the idea of staying in the house all weekend doing nothing but housework... seriously how many freakin times can you sweep the floor in one day. So instead Miss Sarah and I hoped on a bus, packed a bunch of snacks and met Scott down at the boat. From 2 in the afternoon till almost 10pm all we did was sit on the boat, play cards, drank tea and pretty much relaxed. Ok so sitting on the boat wrecked my back and for 4 days after I ended up with back and leg pain but I didn't care.. we had fun.. I was outside.. I was away from the norm and enjoying myself.

So Friday night this weekend I come home and rush around the house to get it cleaned up cause its like 30+ with the humidity and no matter what I"m going with Scott on the first run with the boat cause Miss Sarah is like freakin all night about the heat and needs to cool off... I honestly believe her SPD kicked into gear with the feel of the sweat on her. So off we go for a kind of late night run but at what cost... how about my fear of being out too far in the water... yeah it wasn't good, I felt like that boat was going to tip over with my kids being thrown into the water and also too I have to get over the fear of having someone drive the boat and being able to move their eyes off of where they are going... to me its like being in a car, take your eyes off for 2 seconds and your off the road... well I'm being reminded by both hubby and son that its not the same on the boat but to me telling them "keep your eyes on the road"... well it doesn't help!!! LOL

So this weekend after a CHHA meeting I had the pleasure of spending the entire day out and around... stopped at a local plant place and bought two amazing hanging baskets and some transplants. Then we went to my sisters for a swim and supper... the entire afternoon I spent in the pool except for a brief brake so sit beside the pool and bake in the sun... hubby and son showed up just before supper for a wonderful swim with them while Miss Sarah was playing next door with her friend... it was wonderful time spent doing nothing but relaxing but at what cost? Well the sun burn I have on my face, arms and chest will heal eventually won't it... it hurts like hell but hey... can't have fun without pain... right?

So then after an amazing supper of chicken and ribs (got to try the bbq ribs on my own) it was time to pick up my other sister and out on the boat for the night.. it was blowing a little too hard to make it on the entire planned trip so we had to settle for a short run up the arm but at what cost... well keep my husband away from the waves isn't going to happen so a little swamp of salt water in my face ain't too bad is it.... LOL

So over all my plans to enjoy every freaking moment of my free time away from pain and exhaustion has worked out so far... sure a little cost of some other pain and suffering but hey its all in fun and fun is what I plan on having... I ain't sitting around doing crappy housework all the time anymore!!!!

Dreams

2010-06-17T06:26:00.001-03:00

Stress? Is that causing the dreams? Every night now for a week I've been having these dreams that are really bothering me cause they won't let me sleep. I get them several times a night. I wake up in shock every time. Sometimes in tears they appear to real. Terrible dreams. Please stop dreams. But better yet what's causing them? Stress!

I had no idea!

2010-06-04T05:52:00.002-03:00

I had no idea that this was part of the package. Had I known I am sure 100% I would have been ready for it but never can you be ready.
About 2 weeks ago her dad got upset with her over something that should never have happened. Both their reactions honestly was strong and both felt so bad and they both discussed it and we were on with the rest of our lives. No problem, hey stuff happens. But little did we know it was actually the start of it. Well I"m sure at some point it started before then but it sure came out that day.
See she has anxiety and part of that is not being able to get those thoughts out of your head. That's how the Dr explained it to us last night. Until then I didn't have a clue that this is what the past two weeks have been all about.
Does anyone have any idea what its like to have your baby cry in absolute heart breaking tears that no matter what you do you can't do enough to make it go away? Well maybe if you are reading this its cause its happening to you.
Let me back up a little.
Two weeks ago Sarah spilled a glass of pop. Her dad hollered at her to get paper towel to clean it up but she was in tears, holding her breath, upset totally that she had spilled this pop and wouldn't move. It wasn't the pop being spilled that upset her Dad it was the not moving that upset him but she didn't understand that. The pop go cleaned up and all was good till about an hour later when I went into her room to get her ready for bed and the emotions hit again and all of a sudden its "Dad never understands me", "Dad is always mad at me"..... no he's not, where does this come form. I can't deny your feelings but why are you feeling this way. Her dad felt so bad over it and he talked to her about it but what was up with the "no letting it go". The tears went on for a good hour or more. As a mom we try to cure everything for our kids but this was different no matter what I said she wasn't having any of it... it was her thoughts of her dad not liking her that got stuck in her head.
Then several days later I found her crying again. What's wrong baby. That day a friend was called a baby by another girl in the school. Sarah found it in herself to stand up to that girl and tell her she was wrong and it wasn't nice for her to say. Well, good for you, congratulations for being such a good friend to your friend. Yeah no that wasn't happening either... instead this idea got stuck in her head that the friend was hurt by the words of the other and it was upsetting Sarah. Again the emotions happened several hours after the event and lasted for several hours.
Then the other day someone else told her that her BFF laughed at her while she made a shot in basketball. Yup, you guessed it... several hours later and it lasted for over an hour, the tears.. the pain... the emotion... the idea stuck in her head that this BFF had laughed at her.
OMG what's going on... why?
Well the Dr explained that with anxiety the brain is telling her to hold onto to these thoughts, that they get stuck in her head and she doesn't know how to get them out.
Similar to the reactions she was having before the medication, so now instead of having the physical reactions we were getting before with the screaming, the hitting, throwing, the out of control behaviour we are now getting pure and raw emotions.
And honestly neither one of those, before and after the medication, can I do anything to console her. My words mean nothing. She has this idea stuck in her head that just keeps playing over and over and over again like a broken record. And there's not a quick solution either. We need to teach her how to cope with these thoughts. Cope with how to remove them from her head.
So after a very long and rough day yesterday its time for her to go to bed when she gets it in her head about the notices she lost and how she's not going to be able to get treat of the week.. it turned into tears for 45 mins... running around the house just at the moment of bed time, trying to find these notices. Tears of failure for not remembering where she lost them. Tears of panic cause the next day she wasn't able to get her treat of the week at school. And no matter what I did to reassure her to talk to the school tomorrow nothing worked. Then it turned into seriously uncontrolled tears, she come running into the room to jump on the bed to try and catch her breath and didn't pay attention to my leg and landed right on it. At that point I knew she was out of control and when she told me too that she was crying so hard she didn't even notice she pee'd herself I knew at that point she needs some serious help to learn how to control this. And we need some serious help to learn how to deal with it when it happens.
So her Dr is going to make up books for her that she can learn from and she is recommending a program for her to attend with other children who suffer from anxiety... then Sarah can see that its real, that other kids have it... that she's not alone!
In the meantime we hope these days are few and far between... only 4 in 2 weeks really isn't bad.. before medication the outburst were daily so I am thankful that its not daily that's for sure.
I just want to find a way to help her deal with this... I had no idea what this was but now I know and now we can move onto the next stage and learn to help her.

Its not easy....

2010-05-28T06:43:00.003-03:00

Some days lately are very easy, others not so.

Yesterday was one of those not so easy days. See if ANYONE who is raising a child with disabilities thinks they are doing a wonderful job managing EVERYTHING your wrong. We only have so many minutes in the day and each of those minutes are needed to do what we need to do to survive. So something has to give... right? Wrong! See we are doing an amazing job at surviving not managing...

Well at times it could be you that gets forgotten, another child in the house, an animal in the house who doesn't get walked or your spouse who feels left out..... but the most important thing you can do for everyone is remember one thing.... you are in survival mode! So do what needs to be done and survive so don't get upset that you lost track but learn from it.... remember EVERYONE counts in every one of those minutes... don't forget and loose track of anyone of those people just little things can make the difference when it comes to stress in our lives... a thank you, a quick kiss or a long moment at night when the kids go to bed! Yeah you'll loose some sleep but hey you are use to that by now.

So please if anyone can take what I've learned in the week.... you count just as much as everyone else and everyone else counts just as much as you.

Hug your kids... tell your husband you love him... and why not spend a minute or two on the floor patting the dog and while your there dust the tv cabinet... multi-tasking never really hurts!!! LOL LOL LOL

Where have I been?

2010-05-22T08:45:00.003-03:00

Well the past month has been so exciting for us but I'm a little tired I have to admit.

A month or so ago our daughter was asked to help design a bracelet to bring awareness to the hearing impaired community.

Not only did she come up with the most amazing design and saying for the bracelet but we came up with a whole campaign to bring 'understanding".... including posters, brochures, flyers, a website.

And it all was launched at a social tea event on May 20th.... so now I"m back. Well at least for a while! The next phase of getting the message out will start soon but for a few days I've kicked it into low gear and hopefully baby girl can relax a little.

Its been an amazing project to work on and all along she has made such strides in her self confidence. Not once did I ask her to do anything or say a word that she didn't feel good about doing... it was peaceful and calm for her. But the day of the launch was a busy one... class trip the same day... and then the social event that night. She did amazing... so many people couldn't believe how well she "worked" the room... how to spoke to people... how comfortable she was.... BUT we seen the other side that night... exhaustion... so she slept in our bed that night and sure enough the anxiety kicked in.

The morning brought back "momma I can't do this", "momma I can't go to class"... tears! But she did it. Then last night brought sadness for no apparent reason.... just tears and some really bad behaviour... but also brought in a urge for her to clean up... she cleaned up her room for several hours! But its all good.... she remained in our bed again last night... its our way of letting her feel safe when the anxiety is so high (sure Mom and Dad could now sleep standing up from lace of sleep!!! LOL) a place for her to relax and catch up on some much needed sleep.

I'm sure today will be a calmer day and after all its the long weekend... the sun is shinning... its time to enjoy and be proud of all that she has accomplished.

If you are reading this and would like to join us for our Understanding Hearing Loss campaign please visit my new website.................

http://www.understandingwhatsnext.com/

It was today....

2010-04-30T05:42:00.002-03:00

Today was the day. It was a normal work day, a normal school day. But today was far from normal. The news that morning said fire dept would be going back into the fire zone to check for hot spots today. Still no concern of ours it was too far away to worry. Off we go. See tomorrow our baby girl is getting her feeding tube out finally after 8 months that was suppose to be 8 weeks. We had work to take care of cause we were at the hospital tomorrow.
I remember getting to work and attending a conference call. Nothing new there. During the call a knock on the door came, my sister (who works with me) passed me a note. "There's a fire at Roach's Pond". I smiled and she closed the door. The call ended shortly after that and my attention was to review what was next with the person who was with me but my eyes kept going back to the note... I knew about the fire, so what it was far enough away, was there a flare up? Why did she interupt my conference call? For the next few minutes those thoughts kept coming to my head. So quickly I opened up my cell phone... 5 missed calls from home? What's going on? Why is there this note and why so many calls from home? I told the person I was with that somethings wrong and I left the room to head to my sisters desk, who has a view from the windows in our building.... huge plumes of smoke, massive amounts of smoke... omg! that's not in Roach's Pond area anymore.
Back to my desk... oh my god... more missed calls on my work phone... a message from my mother-in-law... she's in Spryfield with our daughter... her message said "The fire is huge its spreading fast, omg I have to get home now" Panic in her voice. Panic came over me. I immediatlly called home.... our son answered the phone... what's going on Cody? Mom you have to get home now the fire is huge I can see it... Mom what do you want me to save? Cody get your grandparents and sister out of the house... we have a time Mom what do you want to save... Cody grab the photos, grab all the medications, pack up the Van and get out Cody don't worry about anything... please Cody just get everyone out of there. A phone call from another sister... come on I'm taking you home... a phone call to my husband... leave work now... leave... go home get our family.... little did I know how bad it was... I was scared but till we actually turned the corner to face our home I had no idea how bad it was. The large amounts of smoke could be seen all over the city so I knew I was driving into a bad fire but not in my wildest dreams could I ever image how bad it was. Just by luck both myself and Scott pulled into the yard at the same time. OMG we said. Neighbours were packing their vehicles. People were trying to get back to get their animals.
When it happened.... within minutes dozen of police cars flying up the road in front of our house... forming a line... get out now... get out now... get out now... get in your vehicles and leave now.. the fire is coming this way... get out now... drive!!!!!
I ran from the top of the driveway... screaming everyone out everyone out... over to my neighbours to tell her to get out... our son ran to the other neighbours... get out now... they are evacutaing is... you have to leave. I ran into the house... get the cat... get the cat... Grandparents get in your van... we have the kids and the cat... leave now... leave now... drive.. we will meet in Spryfield. OMG what is that noise... explosions... propane tanks, trees, homes exploding... less then a 10 min walk from us and its coming down this way.... Its ok we kept saying all the way driving, its ok we got home to our kids in time... we are all safe that's what matters. We are all safe. Then it hit me when Cody said "Mom one of my friends homes is back there, he was on the bus with me, he usually is home alone" The worse feeling hit me in the world. We are safe but what about our friends, what our the children. This all hit just shortly after they got home from school... most of the Jr High and High School kids come home alone. Oh please let them be ok. A short distance down the road by the grace of god was his friends father... Scott pull over... off Cody and I went to talk to his dad... is your family ok? yes, for some reason I was home today.. I'm normally not it was terrible... the explosions... driving up that road with fire jumping and hitting my truck but I got my family out" Relief hit me... please tell me everyone else got out. But we won't know.
Off to drop our very scared Cat off at the vet... please take care of her.. she's old... she's deaf.. she's afraid and I need to take care of my kids... yes, leave your cat we'll take good care of her...
Off to find the grandparents... are you guys ok? yes as good as we can be.
What do we do now? Off to Tim's.. I need a coffee.....our friends had their TV on.. go to the red cross center to register... off we go... off to a parking lot to watch the massive fire.. off to make a phone call to my family... off to my sisters for the evening... we are out for a while... what do we do.
Hours went by quickly as we stood in a parking lot miles away watching the flames, the glow of the fire, the explosions... how many homes? how many lives?
Yes our family was safe. Yes we can replace our home.
BUT what do we do now........
And that's how the day went exactly one year ago today......... tears still come down my face a year later... and strangly enough we still smell smoke and burning forest in the air a year later... a reminder of what could have been..... an entire community in fear!

1 year ago today

2010-04-29T06:11:00.002-03:00

1 year ago today we did what we always do. Off to work. Home again. News said there was a fire. We knew the area it was too far away from us to worry. It was a brush fire of sorts. Nothing new, it was a dry April small brush fires were popping up all over the province. Little did I know tomorrow would be a day that I still cry about when I think about it. But 1 year ago today all I had on my mind was getting my job done cause in two days our baby girl was finally going back into the operating room to get her feeding tube out after 8 months. But little did I know the feeding tube surgery would be the least of our worries. Little did I know that several phones calls from home about a raging fire that was out of control would change our lives forever. Little did I know we would spend 2 days of pure hell away from our home not knowing if our home was still standing, not knowing if any of our neighbours homes were still standing, not knowing if everyone made it out alive, not knowing!!!! 2 days of pure hell...........

She is so nervous and we are so proud

2010-04-28T06:16:00.002-03:00

She went to bed last night in tears... worried about how today will sound! She's worried she'll hear the kids chew their food, she's worried the school bell will scare her, she's worried the noise in the classroom will make her feel different... she's worried!
But we know how well she will do and we couldn't be more proud of her.... what a great girl overcoming her fear of change and putting those aids on.... so so proud of her we are.
Love you babe... today might be a little hard but I promise you have a group of people who love you so much and we'll do everything we can today to make it not so scary.
Love you forever and always
Momma

She did it.... well kind of....

2010-04-27T16:10:00.003-03:00

She did it... she remained calm during the hearing aid fitting. Mind ya there was including me and her dad 6 adults in the room so the amount of people kind of upset her... at one point she said Momma there are too many people, so off to the waiting room with her dad so I could talk to everyone about her new aids and how they work. Then back in for a quick minute just to put them on and as I promised her... off they went till we got home. She was so nervous going there but she did it... she did great. She didn't get upset at all and I kept my promise to her. I explained to everyone that she was nervous and with the GAD, OCD and SPD she could be set off at anytime so I asked them to understand our plan to just put them on for a minute then when we get home and its quiet and safe we'll get them on. And sure enough it worked..... SHE HEARD HERSELF CHEW for the first time ever!!!! She heard the rain on the roof for the first time ever..... she is hearing so much better... the TV is so low... its so quiet!!!!! Most of all I'M SO PROUD OF HER... she did it!

I find myself

2010-04-27T09:46:00.003-03:00

Normally I don't blog till after an event has passed but I find myself already on edge about our apt today.
See today is new hearing aid day. Oh my... "new".... that's a four letter word for a child with Anxiety OCD and Sensory Processing Disorder. They are going to be so different for her. They will be clear and louder and will put her hearing back in check with the aids BUT the anxiety about the apt. about putting them on, the touch, the sound... it will throw her OCD and SPD into a tail spin.
So this in my plan. We go to the apt and allow her time but still respecting the time the apt will allow. It will be difficult for her and I find myself already on edge to explain to the people at this apt that its ok... let me take her quietly home and adjust to her aids... please don't expect her to just put them one and walk out.. god we can't get her to change her socks how in the hell is she going to just magically adjust to new aids after 5 years of having the old ones... they are apart of her! Please adults understand this, its not her fault. And for god sake she's my daughter and I'll stand behind her and help her at what ever cost so please don't make me feel like a fool and say anything stupid like "oh come on they are better for you".... PLEASE DON'T DO THIS TODAY!
So we leave soon..... I'll post results later.

Its been awhile

2010-04-26T06:13:00.003-03:00

Its been awhile since I blogged but only cause I've been so busy. I'm working on a project to support the Hearing Loss and its been an amazing experience. I've learned a lot about myself and met so many great people.
I can't say things have been extremely quiet around here but on the whole pretty quiet to say the least.
We've had a couple of not so good days. A couple of days that brought me right back to last year and the year before. A couple of days that made me call the Dr and say "hold on now I can't do this again". But with some reassurance that break through days will happen it passed. But boy were those days tough to get through. I can't even image how we would have been able to let things continue the way they were. I guess till you see life in a different light you don't really know how difficult those days were. Like all disabilities you just do what needs to be done but when things have quieted down and then it picks up again well lets just say its like being shocked all over again.
So tomorrow is a big day... new hearing aids have arrived and so will her SPD... its going to be a difficult time but I"ll stand my ground and tell all the adults who are involved in her fitting that she may not be able to keep the aids on and I'll work on it when we get home. No big deal... we get through it.
We always do!

Best holiday in like forever

2010-04-05T20:49:00.003-03:00

So dreading this Easter, as honestly we've done in the past, became a waste of worry! It was honestly the BEST holiday we've had in like forever. Missy was so good when she woke up. She didn't make any excuses about being tired, or not wanting to look at what the Easter Bunny brought for her. She didn't scream once all day. No tantrums. No throwing. No kicking. No over the top anxiety. She didn't pick an argument with any of us and was so happy to get any gift she received. The egg hunt was the true test and she proved she can do it... she worked with her brother instead of hollering at him. We didn't have to encourage her at all this year. It was so pleasant. She even had no problem with opening her gifts and using them... my god we still have Christmas gifts that never came out of the box but this Easter was so relaxed... so nice.
It was honestly one of the best days we've had... we even went outside and flew her kite and she didn't have one problem doing it.
Seriously best decision we made for her was putting her on the medication.. this is exactly how she's suppose to be... she finally was able to enjoy a holiday! It makes me cry happy tears for her.. so many wasted holidays that she couldn't enjoy till now.
WOW... so that's how a holiday feels!!!

I miss him

2010-03-31T06:04:00.004-03:00

I miss my baby boy so much some days. Strange though cause he's right here in the house. But its not the same. See he's 17 now. All he needs from me is a warm place to sleep, food in his belly and clean clothes to wear.
He does not need his Mom for anything else.... he's all grown up now.
When did that happen? I'm so proud of him and who he turned out to be cause he's such a great guy he really is. But where did my baby boy go and when did he leave?
When did me coming home not mean he was in the window waiting for me?
When did the phone calls after work to tell me so and so did this and that?
When did the Mom can I get this toy and that toy go away?
When did Easter for him become about trying to schedule his trip to his friends house?
When did the kiss good night mom stop?
When did me telling him something stop him from coming back with a reply?
When did the questions upon questions upon questions stop?
When did it all go?
I know as all kids do that he'll be back to me. He'll pick up the phone some day and tell me... she did this and she did that. He'll be happy to come and see me. And some day he'll be waiting at the window with his own kids when I come to visit.
But in the meantime.... when did it go?
I tell him I love him. He knows I do. I know he loves me and I know he knows I know.
But I miss my guy... I miss the hugs and kisses good night... I miss the tucking him in bed at night... I miss the dragging him out of bed in the morning for school... I miss the late night doing homework... I miss watching him ride his bike... I miss worrying about where he is with his friends... I miss all of it.. I miss my guy.... I miss you booboo and someday I know you'll be back.
Love ya booboo
Forever and always

There truly is always a reason

2010-03-27T17:36:00.003-03:00

This past Wednesday night Sarah became very upset about things again. The only way I can truly explain it would be for you to have read my past posts, the posts before her medication. It was so truly difficult to see her slip back into the state of mind again. After some serious conversations about what would happen if she would loose all her hearing, as she fears. And after talk about not wanting to go to school the next day and her fear of leaving me she finally feel asleep. But we knew in our heart it wasn't going to be a good day on Thursday but at least she was a sleep for the moment.
It wasn't long when the screams from her room came..... MOMMA I NEED YOU... off to my bed I sent her. The dog wasn't feeling too great that night either but that's not what woke her again it was the sense of me getting up from beside her... more screams MOMMA I NEED YOU... I know baby I just have to help Mickey I'll be back. She truly didn't fall asleep while I was taking the dog outside and when I climbed back into bed at 2 am it was hugs for me and MOMMA I NEED YOU. I know baby. 5am came pretty fast and after I wiggled my way out from underneath her arms it was long before "MOMMA I NEED YOU"... needless to say I knew it was going to be a bad day. The MOMMA I NEED YOU and the true tears of heartbreak and sadness came all morning too but I was determined as the Dr's tell us to be to keep up my chin and continue on to work.... she has to learn that MOMMA I NEED YOU days can't mean that momma sayes home from her job cause the MOMMA I NEED YOU days may never end. After peeling her arms from around my throat I went to work. All morning I worried, did I do the right thing... god what kind of mother leaves their child with someone else when she's in this state of mind. Knowing that if I called home to see how she was doing I would just set her off again I decided to have Scott call... the update came around noon that she was still asleep... OMG she didn't wake up till close to 1pm.
Oh that child was tired... I don't think she slept for more then a few mins here and there cause of the fears.
But what the hell was setting her off this time. Why isn't the medication controlling it... my god its got more power then the medication.
A great friend of Sarah's and mine who we met during our support group and brings so much wisdom and knowledge to me when we need it used the perfect phrase "Sarah is mourning the loss of her hearing" OMG that makes so much sense. Then to come and find out that her teacher wasn't in class and there was a sub that day... Sarah used the phrase "her teacher wasn't there for me what if something happened". No medication can take away such strong fears... I knew then we just needed to give her time.
Friday wasn't much better but easier. I didn't have to pry her arms off my throat and neck but I had to promise to be home on the 5 o'clock bus. I also talked to her several times during the day while I was at work and she was at a few points in tears but Nanny was able to quickly redirect her and it didn't last long.
Last night wasn't too bad, she was letting me be further away from her and at a time or two she actually stepped out of the room away from me.
But today... well she's back now! Yeah... all the anxiety and fear have slipped back down and gone away again. We had an amazing day today...
We went to our support group meeting and talked about a few things, well more then a few things but most of the stuff is still new to me so I find it hard to really truly understand it all but I will... it just takes time.
And today Sarah spoke to one of the girls in the group and her dad. Both have implants and where Sarah wanted to know what would happen if she lost all her hearing she was given the chance to talk to the both. Beth is an amazing strength for us... she seems so much like Sarah... a wonderful personality, caring, thoughtful and we adore her so much. She is so willing to talk to Sarah and become her friend... she said Sarah can be her little sister... she said she has a younger sister but not a little sister so Sarah can be her little sister. Sarah was so happy after the meeting, it was like a pound of confidence came over her... she was talking, laughing, shoulders back... she felt like she wasn't so much alone anymore. Wow what an incredible feeling to see her react that way. And when asked by Beth and her dad to show her the CI's she agreed... Sarah actually walked away from me and spoke to someone without me doing it for her... she did it all on her and gave Beth a hug and promised Beth she will talk to her on FB and Email... OMG everything so happens for a reason... Sarah's anxiety attack about everything gave me the chance to send Beth an email asking for help, Beths offer to talk to her gave Sarah the confidence to know she's not alone and gave her the ability to meet and actually speak to someone other then Mom and her family... which in turn gave Mom and Dad and the rest of the world the chance to know WE DID MAKE THE RIGHT DECISION MEDICATING HER!!! All that pain and suffering of trying to know what was the right choice was for a reason... our baby girl is here. Sarah is finally who Sarah is.... an amazing strong independent girl! Welcome Sarah... this is your story... your story of how you got there... thank you for letting me be part of how it all happened... love you baby... love you forever and always!

And the most amazing thing happened today.... Sarah has been given a chance to design a braclet that will be used to raise awareness of Hard of Hearing during the May's Hearing Awarness month.. OMG they asked Sarah is she would design the bracelet, come up with a word to describe the bracelet and possibly be part of the Beth & Sarah story as the bracelet is being presented on May 20th... .OMG OMG OMG... this is a chance to get her story out there... to bring awarness to the world (even if the small part of the world) to be proud of who she is....

Oh what a great day it was today!!!!

What a week

2010-03-24T22:32:00.004-03:00

What a week and I can't say a word about why? But all I can say is its been nothing but stressful to see so much pain, so many tears... I'm exhausted, I'm worried, I'm concerned and there's not one thing I can do to change any of it so I've decided to go back to my favorite saying in life....

Life may give you choices you can control its how you choice to deal with those choices that you can control!

But I can talk about one thing. Last week when we were told baby girl lost more hearing I didn't think about her hearing that news and how it would play on her mind. Till tonight! As she was going to sleep she started to question it. She wanted to know if she was going to loose all her hearing and if she did what would happen. What do you say to an 8 year old except to reassure her that it'll be ok but without giving the impression that its going to happen. Reassure her if it does happen we will make the decision for an implant but without giving her the impression that she will need an implant. How do you discuss that life changing event with an 8 year old? You can't deny the truth! You can't deny her feelings! But we also don't have a magic ball and we don't know the answer so how do you reassure an 8 year old that it'll all be ok when your not sure yourself that it'll all be ok. How do you reassure an 8 year old that her life could be totally different if it does happen? It was a hard question to ask and as her Momma it was hard to hear her ask but instead of worrying about how to answer I thanked her for asking. I reassured her that no matter what her family will be here for her and that there are options out there that will give her hearing back. Did I take the worry away? I'm not sure... she may only be 8 but wouldn't you worry if you were her? Its so difficult!

Still not understanding but so thankful

2010-03-22T06:15:00.003-03:00

I'm still not understanding how the medication is working so well. How can we go from absolute fear and screams to days of peace? How can we go from days of absolute screams of terror to get her in the shower to days when she doesn't even notice she's been in the shower? How can we go from days of hours to get her to sleep to sitting quietly while drifting off to sleep? How can we go from days of not being able to do anything without fear of setting off the screams to days of relaxing enjoyment?
So last night I thought it was time to ask the person who holds those answers. Her reply was simple... Momma I still feel the same way but now I know I can control it.
Wow such powerful words from an 8 year old. Such a lifting comment.
"Its in her control now". She never asked to do all of this. She never wanted to be so misunderstood. She never wanted to be so out of control. She never wanted to feel the way she does. And now I know we made the right choice. Its given her back control of who she is. Its given her the ability to be able to control her own decisions.
Its given her the power to be who she is and still allowed to remain who she is.... the most amazing young lady you'll ever meet!
Its given her mom a new look at life. Sure Mom and Dad aren't quiet able to stop sitting on the edge of their chair waiting for the next huge thing to happen but the quiet days sure are enjoyed and respected for what they are.
We love you baby girl... we love you so much.

How did she do that now....

2010-03-20T09:54:00.005-03:00

Ok so March break has been amazing. The weather has been so nice its been getting up to like 14 we haven't seen this type of weather in March in like forever!
So every day I've been doing my best to get outside and do some yard work or just hang around on the swing with baby girl.
The virus that grabbed a hold of the house seems to be slowing down with the exception of my freakin ear!!! No way will this fluid go away so I still sound like I've got a fridge running in my ear.
And on Thursday we had baby girls annual hearing test and to our suprise but not total shock her hearing has taken a drop... is the 2nd drop since she was born so we've been pretty lucky but without her aids on she's not hearing high frequency sounds at all now. But new hearing aids will be coming her way soon so thank the lord we can get the sounds back for her with the new aids.... yeah. And the new ones will have blue tooth built in so she'll be able to just click a button and listen to her Ipod and computer through her aids... she won't even have to take them off... now that's cool.
The medication she's on for her anxiety sure helps with all the day to day stuff but that urge to explode is still there when there is a change in how she lives.... and we learned that when they adjusted these aids to max out the frequency... she had a total breakdown in the hospital... omg it was terrible the screaming, the dragging her out... god I'm so glad those days don't happen too often let me tell ya. But thanks to the medication we were able to get her home and then I was able to talk to her calmly in a quiet place and the hearing aids came back on... to be able to talk to her and have her actually understand in a calm matter why its important to wear them... my god without the medication we'd still be arguing about putting those hearing aids on.
So after we past that hurdle it was time to enjoy the rest of the week......... till yesterday afternoon all was going along great then we were outside and she had this look on her face when she called my name... what's wrong baby? She was holding her hand and not really in a state of no return but more like a "omg momma what did i do" state. She was playing with the basketball and it came back and hit her finger... there was a bruise right away and as the day went on it started to swell more and more but it only hurt when she tried to use it.
Yeah maybe we should have it xray just to make sure... thankfully it was broken just a bad sprain the dr said but when he looked at the xray then looked at her finger he even went back to recheck the xray cause he was even surprised that finger wasn't broken... but nope tough girl didn't break it.... my goodness she's a tough girl!!!!
So here it is Saturday morning and all is going good.... its another wonderful day outside so I think I'll enjoy some yard work today and then make up a batch of my pasta sauce that she loves so much.... I love so much to cook I wish I could just cook all day long but I'd make more then people can eat so guess I'll just limit myself to what we can eat and enjoy doing that much.
So off I go now... only two more days and I"m back to work and the kids are back to school!!! But hey its all ok cause my ear will be fixed eventually, baby girl has made incredible progress with her anxiety.... things are good to say the least!

Week 3

2010-03-17T10:28:00.003-03:00

Week 3 now and the house is seeing no end in sight...........

Nanny came down with the virus twice in 3 days and Momma can't seem to shake this sore throat, one ear is sore off and on and the other one... well I've lost the hearing completely now from the blockage and the ringing is getting louder and louder each day. Yesterday was really strange it sounded like a piece of electronic equipment was malfunctioning in my ear... really weird. This virus sucks so bad and now I can't get in to see the Dr who I need to see just to get the referral to see the Dr who can possibly fix my ear until next Tuesday... man its going to be a long week!!!

One good thing its March break for the kiddos so I'm home... yeah... nothing better then being able to be home when they are home from school I love it.

Ok so where did I leave off

2010-03-13T09:54:00.003-04:00

So that after Scott recovered from his virus on Friday we went into the weekend feeling pretty good. Some belly pains but nothing too serious. And I felt ok but not good. Saturday lead us to a normal Saturday of cleaning and groceries and ended like it always does. Sunday was amazing... it was warm and wonderful. We spent some time outside on the swing just doing nothing. But then Scott got tired and rested for a few hours... strange but with that virus I guess its expected. Monday lead us into the week of OMG!!! Monday we all felt pretty good with the exception of Scott's belly just not coming back to itself but nothing too bad. But for me Monday was like... oh I'm not feeling too good I feel kind of funny and off I go home after work only for Scott to find me with the furnace cranked up, me wrapped up on the couch and freezing to death. Ok that's it I had enough every ounce of my body was hurting. Off to bed I went. No way at all was I making it out of bed on Tuesday and baby girl wasn't feeling great either... we stayed in bed pretty much all day. Wednesday was a normal day... off to work... off to school but I still wasn't feeling great but I was better for sure. Thursday brought on the start of the worse infection I've ever had.... around 2pm it felt like someone put a cork in my ear.. what's up with that then the pain hit OMG I left work to go see the Dr either I had a brain tumor let go or an ear infection. Yup your ear is really bad and its gone down into your jaw... that's why your throat was feeling like it was swelling on Monday and Tuesday... cause it was! And your other ear is plugged solid... oh freaking wonderful. So now pain medication and antibiotics and in a few days you should be feeling better. Friday was pretty good... no pain but I could tell it was there....

Then comes today... worse freakin headache I've had in my life... my face is swollen... my ear is completely blocked now... OMG I'm suppose to be getting better not worse!!!!!

Stupid freakin virus!!! Time to find the little shit and blast it out of this house!!!!

Week 3 starts tomorrow since this started... I still haven't recovered... now Nanny has been sick since 5am this morning!!! So it looks like we are going to head into Week 3 of the sickest house in history!!!! God help us all......

Holly sweet love of god....

2010-03-05T06:42:00.003-04:00

Holly sweet love of god could this house be any sicker!!!!

Last Thursday Cody woke up with pains in his belly... sometimes not strange for him. Things moved along and the next few days were pretty normal (well as normal as they can be since Mom is adjusting to her son having a girlfriend... yup!) Then Sunday night on his way home from being at his girlfriends house he said he wasn't feeling well. Little did we know how bad it would be. My god that poor child, I'll save you from the details but lets just say within the first 24 hours he had seen 2 dr's, made a trip to the ER, almost passed out in front of his mother and spent 2 hours waiting to get blood work.... Dr #3 came along on Wednesday who explained how bad this virus is and how lucky he is to have his age and health working for him or as the Dr said "god help you if you didn't". He had lost 5 lbs in the first 3 days, hasn't been to school now in a week, sleeps most of the time and feels like his stomach has been wrenched... each day he gets better but Dr said it will take a while. More blood work is in his future in the near future....
So on day #2 his sister wakes up from a sound sleep gagging and trying to throw up but since she can't physically throw up since her surgery took that away (yeah!) she spent most of day 3 laying in bed in pain and feeling gross... not yeah at all!
So day 4 comes along and believe it or not we are dealing with a poor dog who is now throwing up for half the day... poor guy... throws up... goes outside... back in to lay down. He comes around just around supper time and seems to be doing very well now... funny! both of the youngest in the house only affects them for less then 24 hours.
So day 5 and I wake up to a FB message that sayes "being sick sucks!" WHAT? its my husband... and he posted it only a few hours before I get up in the morning? Oh no! Oh Yes... then all of a sudden his world explodes AGAIN!!! Poor guy....
Holly sweet love of god... that puts me next!!! Its like watching a ticking time bomb waiting to go off... I swear I can make myself sick just thinking about being sick... NO PLEASE FOR THE LOVE OF GOD DON'T LET ME GET IT. .... LOL Holly sweet love of god women you seriously think you won't... even the freakin dog got it!!!!

Cranky & Tired

2010-02-20T12:36:00.002-04:00

Well I think it finally caught up with me... I'm tired and I"m cranky... all the stress of dealing with everything we deal with has finally got the best of me.

I want to be left alone... but I want a bunch of people around me... I want to sleep but I want to stay awake... I want to clean up the house but I could care less if it gets cleaned... I want to snap out of the mood I"m in but I could care less who knows I"m in a mood!

What to do what to do????

Time....

2010-02-17T21:45:00.005-04:00

What do you do with information? Well if your a parent of a child who comes with a list of medical issues you take it in, process it and allow yourself to think about it.

Today we had an apt with Sarah's Dr... the outburst are a side effect of the medication make sure she understands the behaviour is not accepted but understand it is her way of dealing with the anxiety, with the spd, with the ocd. So when she sayes "I don't know why I do it my brain just tells me to do it" she's not wrong... its her way of coping with it. Oh! Well that makes sense.

So how are we doing became the focus of today's meeting. Not well at times I said and the Dr reminded me how well we are truly doing. How much and how important our family is to us. She reminded me that we are doing a wonderful job that Sarah is showing wonderful progress and as a family who works so well together she couldn't have been given a better family.

She also gave me a piece of advice I may remember for a long time......... allow yourself time.. time for you, time for her, time for your son, time for your husband, time to grieve, time to be happy, time to be sad.... don't look for the time just allow it and you'll be fine!

Odd day to say the least

2010-02-14T11:17:00.003-04:00

Yesterday was kind of strange to say the least... it was what Scott and I call "roll reversal day".
Sarah wanted nothing to do with me and everything to do with her father. The morning started off pretty rough... she was, well I hesitate using the word but I will, hateful toward me. She was demanding, screaming, kicking, hollering and trying to hurt my feet when I would resist to give in to her. Which put her into a "I'm Daddy's girl today" mood. Every time her and I got into it it turned into her screaming for her father, then she would ask him to go into her room to tell him something (which was always reserved for me) and then she would calm down (which was always reserved for me). Don't get me wrong I'm 100% ok with it... I might not have been on the receiving end of being the parent who she doesn't want (usually its Scott or both of us) but I sure have seen it happen to Scott and completely had an understanding of how it felt before yesterday. But I think the most important thing was for Scott to be able to see how it feels to be the "parent of choice"... its not a good thing all the time... it drains on your emotions, on your energy, it becomes so demanding on your time and mind... are you feeding into the anxiety by allowing the "you don't understand how I feel talks" or are you feeding into the bad behaviour by allowing one parent to be the chosen one.
If anything we made it through the day with several break downs. We made it through the day with several good moments too. But at the end of the day when your laying in her room watching the Canadian Women's Olympic Team score one after another and you see your daughter and husband stand up and cheer for each goal you know the day was a successful day.
So today is much calmer... neither of us seem like the "parent of choice" today.... but its early still!!! LOL

I don't feel good!!!!

2010-02-12T20:18:00.004-04:00

I'm tired... I have a cold coming on and night time is so gross with this cold... I felt like crap pretty much every day this week and now tonight I look like I've got two swollen eyes, my throat sounds like I ate sand paper for supper and my nose feels like its got two concrete blocks stuck inside them... OH NO I HAVE A COLD!

But its all ok... a cold to a women is a cold... I'm so thankful I'm not a man or I'd be saying I have the "flu"... lol lol lol

Oh I have to post this....

What do you call a women who works as hard as a man?

.............. a lazy bitch!!!!

LOL LOL LOL

Enjoy your day whoever reads this!

Yeah no I'm not liking this

2010-02-04T22:04:00.003-04:00

So even after her rough night last night it got even worse.

By midnight I was awake listening to her talk in the sleep about nothing... but it shows me she wasn't settling. Then at 4am I get this loud scream "mom"... I jump out of bed to find her still sound asleep... oh no this isn't good! Then again at 6. So I left her sleep a little longer then normal and then when she woke up all hell broke loose.... hollering, screaming, disagreeing... just miserable she was. But off to school she went... attitude and all! Then by none the school was calling to send her home. Cranky!!! that doesn't cut it. On the way home after her and Scott picked me up it was like someone had taken the peace and quiet away from her. Then for moments at a time she would be back to the peace and quiet... then explode again... all night long!

So then comes bedtime and a huge headache for her!!! OH NO! Did the stress of the anxiety from yesterday bring her on one of her migraines or is the migraine a trigger of the stress from the anxiety yesterday?

Regardless... the Dr told us to expect up's and down's but I knew it was SO bad today when she wouldn't even lift her head off her father's shoulder to wave goodbye to me as I left on the bus!!!

Oh well.... tomorrow is another day!

Yeah just another day

2010-02-03T19:12:00.003-04:00

Ok so today is the first day in her 8 years she decided she would go to a friends house after school... last night was all excitement. The morning was pretty much jumping for joy with an anxious stomach and telling me she was nervous. I honestly expected a phone call that she couldn't do it or she wanted to come home. But, no call came. I seriously couldn't get home fast enough to find out how she liked it, did she have fun, what did she do... I expected to come home to jumps for joy and bagging me to take her back and being overwhelmed with excitement about how much fun it was.
But even as proud of her as we are that she was able to do it... there was no excitement, no bagging us to take her back to her BFF's house... actually there was no joy in her voice at all! She said she had fun and they played games and ate ice cream but that was it. Kind of a blah tone in her voice and now she's been in her room most of the night just watching TV kind of chilling.
I have to say I'm surprised but I shouldn't be.... the anxiety takes over and drains kids so by the time the nerves of the day are done and the day is done then so is she! No energy to tell Momma about her day... actually not much interest in even telling me about her day.
Oh well... the most important thing is that she did it... she actually went to someone else's house for a few hours, she got to experience what it is like to be at a friends house and that is what is important.... but seriously I'm kind of disappointed that I didn't get the... well did you ever see the Christmas commercial for Best Buy when the mom and dad want to pick out the "best ever" gift for their twin girls... well I thought I was coming home to that! Oh well... the anxiety I guess wore her out!

Its a life long challenge isn't it.....

2010-02-02T22:35:00.003-04:00

We had our first parent training (well they call it coaching... I call it training) on how to parent an anxious child today. As the next sessions go on we'll learn more. Tonight was basically an overview of what anxiety is, how it affects the child, how it affects the entire family and putting examples of different situations that lead to being told your child has GAD.
Then the parents got to talk to each other and share our experiences. We all agree to keep what was said private and within the room and because of respect for the other parents I won't give examples of what other parents are going through except to say "wow" there are other parents out there like us.
My god its so unfair for a child to have to suffer with GAD, SPD and OCD.... there is no quick fix actually there is no fix there is only techniques and ways to cope, manage and learn to deal with it.
The Dr who was running the session referred to us as "the child's coach" and boy did she nail that one.
I thought I would come home overloaded with information but instead I came home with more questions.. what will the future hold... how will she be when she grows up... how will growing up be for her. Then I hit the "omg what's going to happen when she's a teenager" and then I sent an email to my wonderful sister who gives me so much support and she reassured me that we will manage this cause she knows I won't give up and that's why I'm her mom. It brought me to tears but sure gives me the strength to continue to learn, to continue to understand to be exactly what I need to be... her life coach.
And as I'm in tears sitting at the kitchen table feeling overwhelmed by the fear of the unknown and reading in the paper about a 21 girl who left hospital that helps deal with mental health issues and then refreshed the screen to read of an 18 year old girl who has autism and has gone missing after she left school today and I'm going through the "omg what's going to happy to our baby girl in the future" my Scottie sayes to me "lets just worry about today and not about tomorrow".
So true... how did I get so lucky to have such a wonderful supportive family and a family that makes so much sense when I have a moment of "oh my god".
Well its late... need to rest the brain... homework to do for next weeks class.

Why?

2010-01-31T22:56:00.002-04:00

Why does it have to be this way. Why can't just getting in the bathtub be something that is so relaxing and fun? Why does washing her hair have to be total torture for her.... the screaming.. my god. Speaking of God... seriously if there was a god why would he do this to her. Why would SPD make her feel like she needs to scream and cry. Why can't it just allow her to enjoy a bath and be fine with getting her hair washed.

Can someone answer me why?

On days like this....

2010-01-28T17:32:00.004-04:00

When I'm not feeling 100% and my energy level is no up 150% it sometimes affects how baby girl's day will go.... my mood so much impacts how she reacts, there's no doubt in my mind at all. But the past few days I haven't been feeling well at all... not anything serious just some stupid small cold... one day my nose is stuffed up, the next day my throat is sore, then throw a headache and tired into the mix and now my glands are swollen but except for needing to sleep after I take Advil for the pain you wouldn't even know anything was wrong. But its like... ok in 5.4.3.2.1 ok I need to sleep!!! LOL So today I went to see the Dr and he said he thinks its strep throat.... no way! Its just a viral infection and a minor one but that gland is killing me so maybe he's right... ok shut up Trudy get to your point.

Well today I come home around lunch time and within no time I was in bed sound asleep... baby girl comes home just after 2 from school and she's ok with me being home asleep.. what do you mean your ok? This is like the first time ever that I've been able to come home from work sick and break her routine and not have to have her scream, cry, get upset, wake me up, holler at me and ask me to get up 50 million times while I bag for her to ask her dad... OMG I got to rest today!!!! Oh wow... I can get a cold and not have to worry about making the "should I stay or should I go" choice.... I know I can do it now!!!

Wow... so cool... what's next... time will tell!

Aniexty sucks so bad.....

2010-01-27T18:04:00.005-04:00

So last week when the Dr called I had good news... we were so happy things had made so much improvement. Then it happened again.... why? Well the Dr explained today we'll have good days and bad days... similar to a roller coaster. Sunday night was the worse ever... just as her feet hit the tub her leg got itchy... my god the screams, the pain, the trying to dig her knees to get rid of the itchy parts. Then it spread... she could feel her whole body becoming itchy... for a good half an hour she just kept screaming and digging her nails into herself to try to scratch it and make it go away and there wasn't a thing Scott and I could do... why? Cause there wasn't a thing there we could make go away. Her anxiety about getting in the tub hit her at the same time this feeling of something came over and it kicked her Sensory Disorder into full gear. To watch your 8 year old child scratch herself and leave marks... my god. What could I do but try to keep calm and keep repeating that it was ok Sarah... its ok baby... it'll go away... there's nothing there baby.. its ok.... over and over and over and over and over again. She screamed and cried for so long that she just finally gave in to it and slept through the night.
Scott and I were exhausted... emotionally drained. Going over what we did. Going over what we didn't do. Going over what we did we could have done better till finally we had enough and slipped into exhaustion and slept all night.
Monday morning brought smiles, calm and no problems.... off to school, off to work... off to face the day just like nothing had happened the night before.
Some days it feels like a secret we are hiding... some days we don't feel and other days we feel everything.
Then Tuesday night it came back..... the phone call... Momma I need you, I don't know why I just need you, you have to come home right now... Momma I need you please. Then bedtime there was no way I was getting her to sleep in her own room... physically I just didn't have it in me and the bagging to not be left alone... Please Momma let me sleep with you... what if I'm awake for hours, what if I wake up... what if what if... over and over and over again... but this time it was different... I could help her... into my bed she went. Right thing or not her Momma and Daddy are here to protect her and if she needs to feel protected to get to sleep I'm going to protect her...
So then today we went to our 2nd apt with the Dr. We are now enrolled in a parent workshop therapy session starting on Tuesday for the next 4 weeks. The program will teach her dad and I how to raise an anxious child.... oh thank god!!! Finally someone is teaching us... giving us help... giving just me and Scott the tools we need to deal with this. Giving us the ability to learn. Thank you children's hospital... thank you!
And of course Momma asks... is there a parent support group out there... what do you mean NO!!!! gee guess Momma should start something... it might take a village to raise a child but do you mean there are parents out there who have no one to talk to, no one to lean on, parents who are dealing with this alone... I'm sure they are doing their best... we all do... but if we don't learn from each other how can we teach our children!
Something for Momma to think about!!!

Dr called today

2010-01-20T22:24:00.004-04:00

Well it was an interesting conversation to say the least. Her new Dr at the children's hospital called today to talk about how she's making out on her medication.
Well I was very proud of her... Monday she spent her first day in school without complaining about her throat or her belly and yesterday she actually walked to the car on her own... went to the car on her own to me means "omg she's all better" but in my heart I know its just a small step. Then last night, overnight and again this morning she complained about her throat hurting really bad so I made the decision to keep her home... her brother was home yesterday with a bad sore throat so I figured the same might be happening to her. By 9am she was pretty upset with me and wanted to go to school..... this is the child that we have been physically carrying to the car kicking and screaming to get her out of the house and she's upset with me about staying home!!!
That to me is huge. The Dr said "wow" after only a week which is the min. amount of time before we start to see changes... that's excellent news she said. We both agree its a small step in a huge change we need to work through but even the small steps to us can become a huge success.
But then I had to ask the question that was bothering me the most.... where did my daughter go? She's is SO bad the past 5 days... OMG this is so not her... even with all the screaming, all the tears, all the hiding, all the fears she has never been mean, never been so disrespectful, oh she sure can push buttons that's for sure... she can be demanding and want her own way and that is something all parents have to deal with and to remind them they have manners is an ongoing process... but to say things like "shut up", "its none of your business", "i don't care", "why don't you move out and never come back", to be so full of hate toward people, to not care anymore.... where did my daughter go. The Dr told me not to worry... its the medication it can make a child go to a place where a parent can become overwhelmed with worry but its a side effect and like all side effects it will lessen as time goes on. Still don't forger to discipline her for bad behaviour... she needs to know it won't be tolerated but understand no its not your daughter.... you went from so much anxiety and fear that you didn't see the bad behaviour and now its just full blown so remind her to use her manners, remind her to be nice and kind to people and when she choices not to then she must have a punishment for it..... oh thank god.. this means my daughter will come back to me!!!! thank you.
Well I'm exhausted its been a stressful few days (ok years! LOL) so its time to head to bed... I've only got one more day left then I'm back to work. I had my followup apt with the surgeon yesterday.... yeah.. path lab results came back and no cancer!!! yes bladder is messed up but its settled down so no medication till it flares back up (which i hope to avoid forever!) and no i'm not healing it''ll be a couple of more weeks but that's ok not everyone heals according to the test book... but I'll be ok and I'm not worried at all.

Scott and I

2010-01-18T09:55:00.005-04:00

Scott and I have been together for 25 years now... we've gone through a lot... there's a list... lets see:
- Cody.... neither of us were ready as most parents aren't but I think we did pretty good but looking back we could have handled the stress better but overall we did pretty good
- Scott's best friend died suddenly in 1999
- Scott has a bad back, surgery on his knee, blood pressure problems
- my struggles to make my job a career took over lives for a long time
- I just had surgery, weight issues, arthritis in my hands, knees and one elbow
- We had to give up our house about 4 years ago and move into his parents home
- Scott has lost one job when the place he was working for closed up. Then got another job that took a tole on his body working on boats outside in all kinds of weather. So he left for an inside job which is easier on him
- A surprise baby while we were in our late 30's a baby who was born hearing impaired and has a long list of medical issues.
- 8 years later and we are still dealing daily with our daughters medical and mental health issues
- Money issues like all couples do
- I spent pretty much of 2009 not being able to do much cause of pain and bleeding. Then in the fall I got so sick there were days I couldn't get up for the pain and exhaustion.
- And of course... the normal daily needs to taking care of a house, family, dealing with vehicles breaking down, groceries, laundry.... all the normal daily stresses
And this is a condensed list and during all of this we thought we were doing well together till recently....
Scott and I finally hit our breaking point and it almost caused a divorce... there I said it... after what we both thought was an unbreakable relationship it almost became breakable!
Why? we forgot what's important. I became so wrapped up in my pain. I became so wrapped up in my recovery. I became so wrapped up in myself. He got so wrapped up in trying to stop the daily stress. He became so wrapped up in himself. He got so wrapped up in helping other people with their problems. We forgot what is important... the two parents of the two best kids in the world. We forgot to do what is so important... take a moment for ourselves. We spent so much time helping ourselves and helping other people and letting other's problems become ours we forgot to take a moment for each other... plan a moment or two alone... loose some sleep to take care of each other... be thankful for each other...we both have needs and attention we need to give each other and after a few rough days of not knowing if we could pull this back together we both agree.... if we don't pay attention to what each other needs are we won't be able to stick this out for the most important thing in our world... our family!
Two weeks have now passed and we are both taking a breath now and one day at time is all we can ask for but together we will take those steps together.

Its been rough lately....

2010-01-18T09:18:00.005-04:00

Well lately I haven't been blogging only because its taken till now to have the strength to do so. My surgery and Christmas then back to school has been extremely rough on Sarah. Her anxiety has been at an all time high lately. Its been so bad, the screaming, the hollering, the kicking, the spitting, the fighting us all the way... my god when was relief going to come?
Christmas for a child with GAD can be so difficult and sometimes even more difficult for the people who are trying to make it the best for her. She spent days and days on her Christmas break that I couldn't let her visit with her grandparents cause when she did it became so hateful, she would argue, she would be saucy, screaming, throwing things when she would come back upstairs... its was sad to watch and frustrating to say the least to deal with. Christmas morning was like it always is... eventful! Tears. Fears. But we made it through it as sad as it was to have it happen its over and gone.
The day we decided to take the tree down came relief... she just all of a sudden said "I don't like Christmas, I'm glad its over" and that was it. Her mood changed. She was pleasant again. Days of good times came... laughing, sleeping, no problems at all.
Then New Years Eve... all day it was great. We decided she's 8 now we would let her stay up for the coutdown... then the countdown hit and so did she... screamed I hate a New Year.. running into our room, crying on the bed, I don't want a new year, shut up everyone she was screaming... my god what was that all about, seriously right up till 11:59:59 she was fine... then all hell broke loose... 45 mins later she was calm down enough to fall asleep. My god Scott what is wrong with her?
The rest of the Christmas break continued with some moments here and there and she continued to hide the anxiety when company would come over or we went to visit someone but then we would arrive home or the company would leave and it would start all over again. Why?
The Jan 4th... first day back to school. The screaming, the problem with getting dressed, the not sleeping, can't sleep, can't stay asleep, what's going on this isn't stopping now... it use to last several days then break for several days but its not breaking... please someone help us... I can't keep doing this. Then one morning Cody, our 16 year old said I can't do this one more day... I can't take the screaming, the crying, the physically dragging her to the car to go to work. And he wasn't just venting he was serious.... he reached his breaking point and so have we.
So I asked him to attend the meeting with the hospital last Monday so he could hear it from the Dr, he might have his questions answered that was my hope. Information and understanding is powerful and I believe Cody needed to understand more.
Time for the apt.... it took 2 hours and a lot of information came to us. The Dr took all her testing results over the past year, along with her medical history from all the trips to the OR and ER, and all of the information on her behaviour therapy and of course what we have been dealing with and put it into a word that hit home... your family is in a crisis and right now you have been living in a survival mode and that isn't sustainable and needs to change. Sarah not only has anxiety that is a real mental health illness she also has OCD tendencies and Sensory Processing Disorder. The fighting her on what clothes she wears, changing her clothes daily, the problem with how her underwear feel or the fact you are washing clothes several times a week because there are only 3 pairs she will wear. Or how the socks feel, how the socks line up on her leg and foot. How she can't wear new clothes. It a real problem for you... for her its how she needs to be right now... we need to get the anxiety in check and under care then we will work on the SPD so for now put your visa card away and let her wear her clothes for more then a day... it will not only make your morning easier it will help reduce some of her stress. Bathing to her doesn't feel right so understand its not her choice to feel this way... do what your doing now that works to get her clean and to change her clothes but if its not working then stop and leave it be. Once we get her anxiety lowered then we will work on the SPD... it was like I was given a get out of jail card... it was an argument I didn't understand why it was happening and now that I know its one I'm not going to win... the argument has stopped. So what about the anxiety... the Dr explained how serious it is, how this can't continue and how she wants to help. We are signed up for a 10 week behaviour therapy group sessions to being in May when the next course begins. And Sarah is now taking medication to help relieve the anxiety. It will take a week or so to see changes but each day you should see little changes. And a few have occurred... last Thursday, Friday and today only once did she say she could do this and only once did she say I'm coming home early. This morning was easier then the end of last week but the weekend wasn't so good. We could tell the anxiety was lifting but in its place was almost hate toward us all, this i don't care attitude, this shut up to everyone attitude... it was terrible what was going on... then Scott clued in... could this be a side of Sarah we never got to see before... the anxiety has been so bad, the tears, the fears that her "normal acting out" child side of her never came out before... OMG she's just pressing her luck... OMG that's easy to deal with... if you act up you loose toys... two bags of toys later and it stopped. Oh no honey... you do something bad you have to learn that's not right. Going down to Nanny's and demanding an egg treat and then taking it when you were told No seriously means Mom and Dad will take it away from you. Its ok honey... good behaviour means you get to earn it back. Wow...
So now the next step... on Wednesday the Dr from the hospital will call me to discuss how she's doing and I have a few questions... this bad behaviour are we right that its normal or is it a side affect of the medication? School... are we doing the right thing letting her have quiet time at lunch in the learning center? I guess reassurance that we are doing is the right thing.
For now we wait, as we do best, and see if the medication starts making a difference... just the possibility of having good days and stress free nights when we get home from work... my god, will it be possible for her to feel better?

Its just been too overwhelming.....

2010-01-12T11:06:00.004-04:00

I haven't blogged since Christmas Eve... why? cause I haven't' felt like it its just been too overwhelming. Christmas was very stressful. New Years was very stressful. Taking down the tree brought joy and that confused me. Then back to school became hell to say the least. Weekends were no fun? Why... what the hell is going on... why hasn't the sadness broken? Why is it so difficult to make it through a day at school? why no sleep anymore?

What is happening to my baby girl? Why doesn't it stop now?

Well we found out yesterday.......... guess its time to blog again and get this off my chest... quiet time tonight if it happens then I'll be back... hopefully!

Time to enjoy

2009-12-24T13:21:00.002-04:00

Its Christmas eve... yeah! Its a magical time of year when wishes and dreams come true. And today I figured out why I had my kids 9 years apart.... so I can enjoy Christmas longer.... tracking Santa... waiting for Santa to arrive... its the best time of year and this year I'm still recovering from surgery so there isn't much I can do but to sit and watch the kids have fun on Christmas Eve and wait for tomorrow to come so we can sit as a family and enjoy!!!

I can't wait.

Jan 11th

2009-12-16T22:45:00.002-04:00

This afternoon the hosptial called. Jan 11th Sarah is booked to see them about giving her medication to reduce her aniexty.

OMG what do we do? For no reason at all she broke into tears tonight and didn't know why she just said she was mad and sad all at the sametime. Medicate? I have this terrible image in my head that she won't be her anymore! But are we not giving her the chance to relieve this aniexty, these fears, this terrible thing she goes through.

For now I'm going to try to focus on Christmas and then make a choice on Jan 11th what to do....

nothing but a bag of hormones....

2009-12-16T14:49:00.002-04:00

ok so i admit it i'm saying it out loud I'm hormonal.... ok no sup rise there... I've been hormonal for ever.. LOL

So the gamet of emotions have run over me in the past week... scared to death to have the surgery, sad to leave my kids, afraid of being alone in the hospital, hating the hospital... recovery... pain meds... feeling like i'm not in control... and countless other emotions all wrapped up into one.

So then the other day my emotions are running crazy and one that came out had everything to do with my temper and nothing to do with common sense and I took it out on Scott... I don't feel guilty at all cause he was in my way when I exploded... LOL. So I offered to feed him his own ass, what's wrong with that! LOL

So we worked it out... he understood he couldn't do anything right that day and I was right about everything... LOL

So then last night the kids are asleep... the dog is quiet and off to the shower he goes and off to the couch to watch TV I go. When he gets out he sits beside me and here I go.... I looked at him and said "I like the smell of your skin when you get out of the shower" he had this look on his face when

Wow what a life we live....

2009-12-16T11:34:00.002-04:00

Miss Sarah's anxiety about me having surgery and now being home and her at school has gone full blown again... comments like 'i can't keep doing this momma" are now showing up. Her pillow at night.. well that's just impossible to get in the right position for her and I promise her every day I won't move it and I never do but each night the tears just flow with frustration for her cause no way can that pillow be right! The socks they aren't fitting right. The clothes aren't fitting right. Oh and the biggest thing... the underwear... my god we have a hundred pairs of underwear jammed in her drawer and no way can she find a pair that fits just right. So yesterday I dug into the hamper took our two pairs and wash them by hand... my god there was no way I was going to have to watch her go through that pain stacking event again this morning but it didn't matter... the same one's she had on 2 days ago just don't fit her the way they should but the screams were a little less this morning so I guess my efforts kind of paid off. But not before it took her 45 mins to get the clothes to fit in the right spot... not before the anxiety of the day hit her and she kept saying I'm coming home at 9:05 Momma... I don't know if I can do it today. A quick heads up email to the school and a reply back a couple of hours later... two complaints so far since recess about her throat. Reply back asking them to try their best to keep her and she has an angel for a teacher who totally understands and knows Sarah needs to stay in school and has to learn she can do this... she can overcome this I know she can.
But then of course I was told not to tell her that anymore either. Her exact words to me last night... "momma when i tell you i can't do it anymore and you say yes you can you have to stop that cause your not me and you don't know what i can do and what i can't" as clear as that Sarah marked the line in the sand... momma is putting pressure on her and she feels pressure... i explained I'm trying to support her and she knows that but she doesn't want me to tell her how to feel... and that in its self is a huge break through.. cause she's know coming to understand that she has feelings and working through those feelings is so important.
Ok so then last night is her Christmas concert.... and a serious care of nerves hits her before her class goes out... she's in tears so I decided you know what its just not worth it... how can you force a child who suffers from anxiety and struggles every day of her life to make it from one day to the next so go out on stage in absolute fear. Instead come on baby girl lets you and I go find a spot on the floor, sit down on my lap in your beautiful Christmas dress and lets watch together... sometimes just watching is better then anything else. Off we go.. she sees her class up there and I ask her "are you ok not being there?" and she replies "yes momma i'd rather be here with you" and I was so happy that I was able to be there with her too.... she's my angel and together we watched a wonderful concert together, got to sing a few silly songs and clapped for the concert... and at the end of the day being there for her is more important then forcing her onto that scary stage after spending days with such anxiety. I love you baby and I know we can work through this together.

Family tradition continues.....

2009-12-14T19:06:00.004-04:00

Almost 17 years ago I came home from the hospital with Cody and an unexpected C-section. A couple of days after coming home Scott's mom sent up a delivery of hamburger and buns... money was tight till the unemployment cheque came in..... that night Scott said go jump in the shower I'll take care of Cody and make supper. Off I go to the shower while Cody sits in his car seat on the table watching Dad make supper.
It was honestly the best supper I had in my life... simple homemade hamburgers with ketchup, relish and mustard and a glass of pop... a meal I'll remember for ever.
9 years went by... money wasn't as tight and here comes Miss Sarah and a planned C-section. Home from the hospital I come and within a couple of days.... Scott's making homemade hamburgers, Cody's watching TV and Sarah is now in her car seat on the table watching dad make supper while Momma's in the shower.
This time... and I'll never forget here comes mayo, onions, ketchup, lettuce, and mustard.... the 2nd best supper I've ever had in my life.
Something about sitting in the kitchen with the smell of splattered grease on the stove and sliced veggies over the counter watching your baby sleeping in a car seat perched up on the table while your in your housecoat with wet hair.
I actually remember thinking this will be my last baby.... my last homemade hamburgers with thick kaiser buns.... oh what a memory maybe we'll do it for our kids some day when they have their own kids.
8 years go by and I'm home from the hospital after having the possibility (and don't worry I'm ok with that) of having any more kids removed from the center of my women hood (lmao!) and off Scott goes to the grocery store... home he comes with thick kaiser buns, pkg of hamburger, tomatoes, lettuce, mayo and onions..... off he goes to the kitchen and off I go to the shower.
Ain't nothing better then sitting in your kitchen with your wet hair and housecoat eating one of the best meals ever to be cooked!
Oh the creation of a family tradition.

Maybe it'll pass

2009-12-12T22:27:00.003-04:00

The Dr told me when I found out about my bladder that its ok to break down and cry... she said the invasive surgery I just went through and now being told I have to wait to recovery to see if the problem with my bladder is causing the pain and not the uterus the just took out! OMG did I make the wrong choice... no cause the bleeding wasn't going to stop but the Dr was right... she knew from the first day that it might be my bladder and doing this surgery might not take care of the pain. So they did the bladder test and it shows Inflammatory Bladder Disease but a lot of women have it and never have pain so till I'm 6 weeks after surgery they won't consider medicating me.... my god does this mean this pain might not be gone! No she's wrong... its not my bladder too!!! Please.
Recovery from this sucks too but I sure do feel a lot better now that I'm home but she said to expect depression and boy was she right.... I'd rather sit here and tear off someone's face and then cry cause I did it then do anything else. She told me it'll pass in a few days and to let it take its course.... its normal! Lets hope it passes quickly.

Well its my last night....

2009-12-09T16:20:00.002-04:00

Well its my last night home.... I took today off work and did some shopping alone! Oh that was so much fun... NOT! Oh well I managed and survived... LOL.

So then after a nap the house is now clean and I'm just waiting for Scott to get home so we can take the kids out to a restaurant for supper. Not that it matters where we eat I just want to spend some time with both the kids together before tomorrow. Cody's almost 17 now so he's pretty much ok with me being in the hospital but Miss Sarah isn't doing so well. She cries a lot when we talk about it and some times she just breaks into tears when she thinks about it so for a couple of hours tonight we won't discuss it but instead just eat together as a family. Then it'll be back home to pack my bag and then I'm sure with the storm that's coming tonight I'll stay awake all night long so I won't miss my alarm clock going off if the power goes out.

Up at 4 so I can shower and then off to the hospital around 5:15... oh my! Surgery is scheduled for 7:30 and I'm scared and nervous but oh look at the benefits when its all done... I'll be able to move without pain... days will go by when I won't know what pain is and look out I'll be able to play in the snow and go swimming this summer not to mention being able to walk and do housework... OMG I'll be able to carry laundry up and down to the basement... wow! All the little things we want to do but just can't. But first 6-8 weeks recovery but at least I"ll be home... its the "up to 4 days in the hospital" that I hate the thoughts of.... god please bless me with a speedy recovery time and let me come home in 24 hours!!! PLEASE... I can't be away from my kids that long... please let me come home quickly.

I'm done...

2009-12-05T11:14:00.002-04:00

That's it my mind is ready for this Thursday.... my heart might be thinking omg I'm going to be away from my kids but after another sleepless night last night and pain this morning that should put me back in bed.. I now know I'm done. I can't take another freakin night like last night. Its like 1115 am and I have no energy to even make the bed... the house is a wreck and I need to clean it up to decorate tomorrow... not to mention groceries tonight and out to buy baby girl a dress for her Christmas concert... but all I have the energy so far this morning was to make a cup of coffee and fry up some bacon for my baby boy.
I'm so done... I just want this over... I want to put music on, clean the house, dance with baby girl and act silly but its taking all I got just to sit up straight!!!!
Thursday now can't come quick enough!

Well well

2009-12-02T06:14:00.002-04:00

Well it turned into a full blown migraine... her 4th one since Aug. Oh no... Monday off to school she went. Off to do some shopping for Christmas Scott and I went before I had to head to my preop apt at the hospital. All day no phone call, nothing. The just as we are pulling into the parking lot at the hospital at 130 we get a phone call... her head is hurting and she's gagging. It was hurting before to but it went away. By the time she got home it was full blown... gagging, trying to throw up and terrible pain that was leaving her screaming. I gave her the motrin she should have been given at the school and within an hour she was all better. I wasn't better... I was pissed off at the school for not following my instructions and giving her the medication at the first sign of a headache... why can't adults listen. I'm her mother and I know what to do but I can't be with her every minute of the day so I leave her with adults who have instructions on what to do and they do nothing! So yesterday morning an email to the principal, the teacher and the learning center. Sarah comes home to tell me they asked her where her medication is... is it in the office or the learning center. Oh come people... she's 8 years old... find it yourself! Maybe its hiding behind the bathroom in the kids washroom... give me a break... shouldn't all medication be locked up in one spot for the kids so the kids don't get into it... how can and adult ask an 8 year old which room her medication is in... god it makes me thing who's running the school!
I'm so tired of them not being able to do their job..... time to send a complaint letter to the school board I think!

Yup it turned into Day 2

2009-11-26T05:51:00.002-04:00

Day 2 started with a wake up call where she stayed in my room with the lights off... lights off usually mean deep anxiety and depression. 45 mins of getting her to move. Trying to stop the tears but we got her off to see me get on the bus but before that happened a strange comment came along... Momma I can go to school but I can't go to my classroom. Why? I don't know Momma I forget but can I go to the learning center today, PLEASE! OK baby I'll call the school. You wipe your tears and go back to the house and get ready. The school agreed. But when the call came again at 3pm and she was in tears and telling me she had a bad day I knew I had to get home to her. Scott wasn't working late last night so I had planned on coming home with him but instead I jumped on the first bus I could at 415 to rush to make my connection 445 so I would be home for her at 5. I get off the 1st bus and run to catch the 2nd bus... another 30 seconds earlier and I would have made it. Oh god I missed the bus this is going to upset her so bad. So I call her.. tears and screams that's all I heard... Momma I need you know please Momma I need you know. I can't do anything about it baby I have to wait for Daddy to pick me up. I jumped on another bus to head to Spryfield and kill sometime so we can get home earlier. Off for the trip to the store we needed to make, coffee run at Tims and stand out in the pouring down rain before Scott makes it to pick me up. But we made it home earlier then we normally would when we come home together... 530. That's not too bad only half an hour late. She seemed OK when I got home just like she does always big hugs for me and daddy and then Momma I need to talk to you... off to the bedroom we go. I'm not having a good day and here come the tears. I know baby but why. I forget she replies. OK well we are home now and that's all that matters. I send an email to the teacher and the learning center for an update. Come to find out the day before was a "break in their normal routine" and something happened to one of the kids that might have been upsetting to the younger kids but I don't get details. Sarah did something happen in class yesterday 'I forget momma" OH NO... I forget is her key phrase when she does something wrong or seen something that upsets her. Yeah so what ever it was upset her and that's why she can't go back into the classroom. So the end of day 2 still tearful lands us in my bed. I do the normal routine of singing her the two songs, I take out her bad dreams and she asks me what to dream about and then bang... Momma I can't stop thinking about you and it makes me cry I can't go to school tomorrow Momma I know I'll have a bad day. Try to stop thinking that way baby... think about good things and how good your day will be. I'll try Momma, but all I think about is you.
So what happened in the class I have no idea.
Will this tear into day 3 I have no idea
All I know for sure is we have to help her work through this rough time with understanding and love and hopefully it will go away.
Please go away!

Aniexty... AGAIN

2009-11-25T06:01:00.002-04:00

Oh my what a bad day she had yesterday. 330 I get a call from home Sarah wants to talk to you so I call her back on our cordless phone. I can tell right away this isn't going to be good. I can hear her walk into her room and close the door. Hi Baby how was your day. No answer. I repeat it. No answer. Sarah what's wrong. I don't know Momma as she has tears coming down her face... I just need you you have to come home on the 4 o'clock bus. I can't Sarah even if I left right now I wouldn't have time to make it. But Momma I need you I had a bad day please Momma. Sarah I can't now listen to me I'll be home on the 5 o'clock bus, what's wrong did something happen at school. And the only replies I get are "momma I need you I don't know why but Momma I need you" This goes on for a few more minutes then I have to be stern and tell her "momma has to work baby I have to go" no way would she listen to me. I'm at work and there is not a dam thing I can do to help her... no a thing and that bothers the hell out of me. Not to mention how disruptive these conversations are to people who are around me that can hear me... she's deaf I can't exactly whisper on the phone. I had no choice but to hang up. I told her I needed to go and that I love'd her and then I hung up. OMG I had no choice but to hang up nothing I was going to be able to say would help her get over this bad day. So I do what I normally do and text Scott to tell him what happened. He told me it was ok and I knew it was ok but it still doesn't make it any easier when it happens.
So off I go from work 45 mins later to catch my two buses. I get a text from Scott.. is she ok? I don't know I can't call her yet I'm still on the first bus. Then when I get off the first bus and walk over to catch the 2nd bus I'm alone so I call her. No she's no better.... its ok honey I'm on my way home. I need you know.. you have to wait.. i need you know... you have to wait. Please Sarah listen to me and except my answer I can't do anything better to get home to you then I am. No way would she settle down on the phone so again I hung up. God what kind of mother am I. But to sit on the phone for the next half an hour till I'm home repeating the same thing over and over again I just can't take it. So home I come and she comes running out to meet me. She's happier now that I'm home but now I'm sad, tired and exhausted. I'm glad I can make her happy but now I'm wearing the quilt of the day on my shoulders. So into the house we go and we aren't in the house 2 mins and she becomes saucy and disrespectful to everyone, screaming at the top of her lungs, telling people to shut up. OMG Sarah what is wrong with you what happened today. I don't know Momma I don't know how to say it. Then just tell me. Several hours go by and during this time she couldn't make a decision to save her life. Which book to read, help Nanny with cookies, play in the living room or in her room, what to eat for supper, what to drink.... omg this goes on forever. Sarah then does what she does when she's ready to talk... calls me into my bedroom. What happened at school today. I didn't have a good day today Momma, I know baby what happened. Oh its so hard for me to say. Just say it. By this point I'm expecting the news of a life time but I come to find out her friend didn't want to play with her and the Duty Teacher talked to her about food for her lunch. OMG guess which triggered the anxiety attack.... yup the food. Not playing with her friend meant she had to find something else to do and that's a hard lesson for any 8 year old to learn but when an adult and a stranger talks to her about food she wants to throw up and she said "momma i gagged when she told me to eat". I can tell by the tone the food did it. It just set her right off and I've already had conversations with the school.... they need to understand Sarah's brain is not wired the same as ours. Food is a general conversation with most people but to her food is associated with throwing up for hours, feeding tubes, pain, and fear. Please listen to me school... even our Dr we work with hasn't been able to get her to replace her fear of food with happiness so why do you as adults think you know any better... please stop making this child's life hell and listen to me. So the night ended with her believing she wasn't going to make it to school today... oh god only knows what her anxiety level will be in the next half an hour when I wake up her.... please let it calm down so we can get her to school today.

What will this week bring..... the weekend sure did bring it

2009-11-23T05:51:00.002-04:00

Its early Monday morning and I wake up thinking "oh god" what will this week bring. Except for knowing that we need to take the dog to his vet apt on Thursday I have no set plans. I worry about everything these days. I guess its stress of not only my job but the job that's most important to me.... being a mom. This weekend I learned a big lesson... relax if you want to do it right.
The pain Friday and Saturday night just about killed me... I seriously could have went to the hospital and they would have had to do something between now and the surgery for the pain but I didn't... I stayed on the couch and moaned and groaned with the pain till I finally feel asleep... the mornings feel so good cause I've been laying down doing nothing all night but life is reality.. I have to work and the pain of doing so just makes my heart pound out of my chest.. knowing I'll come home and spend the night on the couch almost in tears just puts a fear into me like no other. And its not dealing with the pain that hurts the most its knowing I'm loosing time with the kids that hurts so much. I can't possibly even have a rational thought when the pain hits let alone be able to think of thoughts.
So yesterday morning I got up and thought to myself I would take it easy for the day and luckily I have a wonderful husband who pretty much thought the same. So he took over groceries, laundry, hanging out with Sarah and walking the dog. This gave me pretty much the whole day to do nothing except I did straighten up the house, make the beds, do the dishes, fold and put away the laundry, cleaned up dog pee, sorted out Sarah's summer and winter clothes and cleaned off my desk... sounds like a lot but it really wasn't cause it was spread out over the entire day which allowed me enough time to rest in between doing it. And to my surprise I actually had a pain free night just until the exact same time I went to bed then the pain started but I was already almost in dreamland so sleeping through it allowed me to relax enough that the pain didn't keep me from sleeping.
So do I continue to practise this method of trying to stay pain free till my surgery... I wish but I can't.. I have a job to do so instead of coming home and being able to focus on what is the most important in my life I'll spend the next 17 days doing what I do.... sitting on the couch almost all night feeling like I'm going to delivery a 20lb baby!
The weekend sure did make me notice what the problem is but it didn't allow me to fix the problem either.
Oh well... only 17 more days and the problem will be resolved.

Only 19 days left

2009-11-21T08:57:00.003-04:00

Only 19 days left to my surgery. It was confirmed yesterday. I'll be in the hospital for a min of 4 days.. I was hoping for like an overnight stay... LOL. Then that's it for 6 weeks before I can anything or return back to work. OH MY! How in the hell am I going to stay on my butt for 6 weeks....but thankfully I have an amazing husband who's been so helpful through all of this. Last night the pain was like contractions and he stepped in took over and made sure I was able to rest... god I love him! But now the fun begins... 19 days to not only get mentally ready for a challenge but to get Christmas ready too and not to mention getting Sarah ready for a change... Oh my! Its going to be interested. But for today I'll get my butt off this chair, get ready and go to a support group meeting and then tonight Sarah and I are getting under the covers in my bed with a bowl of popcorn and watching the parade of lights on tv... physically I just can't stand downtown for hours watching it so we'll make it a Momma and me night tonight. The tomorrow with paper and pen in hand or maybe laptop and Word... then schedule and list will be made... time to make the list, check it twice and hopefully be able to stick to the schedule I set to get it all done and all ready with less then 2 weeks gone from the Christmas schedule while I recover it'll be a challenge to say the least.

What really matters

2009-11-19T06:16:00.001-04:00

What really matters is being able to come home and seeing your children smile.......... that's all that matters.

It just sets me right off...

2009-11-17T05:46:00.003-04:00

OMG I did it again. I lost my temper last night and hollered at the ones I love. Why do I do it. The worse part is I know better. There is no excuse for it. There are reasons but no excuses. I should never do it. I even promised myself I wouldn't do it. Oh but boy did it set me off last night.
I went back to work after being off for an entire week... back to the grind and the whole time I was wanting to call home to see how she was feeling but I couldn't cause I knew it would just put me in tears that I couldn't come home to her if she needed me. So I waited and waited and waited. Then when I got off work I guess instead of being happy that I was on my way home I was pissed off that work got in my way of being with my baby. But again instead of being happy that I was my way home to her and she was going to meet me I was irritated when I called her and she was a little cranky with me on the phone. I told her I had to hang up cause hollering on that stupid cell phone that doesn't work half the time put me in a bad mood. Again instead of being thankful I was able to talk to her about her day I got mad instead.
So then I get home and here she comes all bundled up for the cooler temps and with dog on the leash.... running to meet me. I should have dropped to my knees and gave her a big hug but instead I just smiled and put my arm around her and off we went into the house. I thought I was ok I really did. I didn't feel like I was cranky. 5:15pm I called Scott to find out he was still working and would be another hour or so. Well that set me off AGAIN.... we had to go out I promised I would buy the kids an ice cream cake and we had to go to Canadian Tire to get stuff for the new basement door that was just installed..... my plan to have her home and in bed by 8 would be ruined. Oh no... I should have told myself to shut up but I didn't. I waited. Then of course when he does get home it takes a good hour to get ready... talk to this person, talk to that person, on the phone... come on we have to go its already after 7. We finally leave and get to Canadian Tire and of course they don't have half of what we need... oh not its setting me off again... I can feel myself getting pissed off for what feels like a waste of my few minutes I have at home with the kids everyday. And then of course on the way there the pain starts to hit... as it does every freaking night. I'm getting irritated more and more. And bang... she sees a $35 toy... no your not buying it...come on lets go... where is your father? where is your brother? on the phone I go to collect everyone... come on I'm ready to go. No Sarah your not buying the toy... sure run away from me in the store to find your father... no your not buying it. That did it... your not listening to me I'm done! We leave the store with only half of what we need and knowing it'll take another trip somewhere else to find it just pissed me off but not tonight its getting late I want to get her home she has school tomorrow. But first off to DQ and the kids want something to eat. OMG seriously why does it take so long to cook the food.... come on people its been sitting on the rack for more then 5 mins now stop making everyone's ice cream and get my food. Oh sure screw up one of the hot dogs and now I have to wait more time... do you not understand people I have to get home. Yes that is the look of pain and loss of patience... I'm done please just shoot me now! So off to the car we go... no time to eat in must feed kids in the car.. we did the pass of drinks.. the pass of food... the "Mom this doesn't take good" its ok its just your cold that makes it taste gross.... I DON'T WANT IT came a scream out of the back seat which set off a pain in his ribs from all the coughing which set off MOM I NEED YOU... ok did I say I was done yet. So we get home and its now 9:03... OMG I wanted to be home by 8 and now how can I say no to a piece of ice cream cake.... please god don't let me stab the cake with such a force that they lock me up... just let me try to slice through the indestructible hard cake... oh sure... I finally get a piece off and it goes flipping and flopping onto the counter... which leads to MOM I DON'T WANT IT IT WAS ON THE COUNTER.. which leads to me just about flipping out. But we made it through.. the cake was eaten and now its time for bed. Stress is leading to Scott's chest pains and one stressful problem is he can't sleep with Sarah in our bed so its no longer Sarah and Mom climbing into bed at 830 or 9 and mom falling asleep.... you have to go into your own room or fall asleep on the couch and I'll put you in your own room. Well that lead to MOM I DON'T WANT TO and yes well that did it.... that's when I lost my temper... I'd had enough. Stop standing 2 feet away from me screaming MOM I NEED YOU... please just stop I hurt, I'm tired, I'm cranky... please just shut up and go to sleep... STOP STOP STOP don't you understand the more you holler at me the more I'm going to holler back please listen to me and stop. Its now almost 10 and I can see where this is going.... into tomorrow morning with no sleep, not being able to get up, not being able to get ready and I'm sure I'll be hollering again. But it didn't have to be that way... I could have just kept my cool, gave lots of hugs and kisses and allowed her to go to bed with a smile on her face but I didn't and that just sets me right off.
Well today is a new day... hopefully it'll be a better day and maybe today I learn to act like an adult mother and take control instead of a child who wants to get her own way and throws tantrums! Wonder where she learns it from?????

Such a mixed bag of emotions

2009-11-15T18:17:00.002-04:00

Ok so Friday morning we get up and spend sometime doing nothing before I go to my final apt with the surgeon to get my hopefully last test results back. On our way we drop off for Scott's blood work cause his B12 was low the last time. Then we head out to DQ to order Miss Sarah's Birthday cake. Then off to my apt. I expected to walk in and be told it was fine... the last test was clear but nope... they found two tumors! Oh wonderful. So the surgery is a go for Dec 10th. What a mix bag of emotions... so happy it'll all be over, so worried that they found two tumors (they can't be cancer cause I already had a uterine biopsy and it would have shown cancer cells so I've been told not to worry! yeah ok we'll go with that!) and so freakin scared of the recovery from the surgery.... pretty much 6 weeks or more before I can do anything she said. She's also not liking my bladder so she's testing me for Inflammatory Bladder Disease while I'm out like a light... .sure go ahead! But something even stranger happened just before we went in to the apt... Scott was starting to get tightness and chest pains but told me not to worry.
So kind of shocked and no knowing how to react we spent the rest of the day planning a surprise Birthday party for Miss Sarah... she turned 8 on Saturday. And boy was it a surprise. We went to play glow in the dark golf with her cousins... she thought that was it... that was all we were doing but when she got home all her aunts and grandparents had decorated the house and had her ice cream cake all ready for her... what a wonderful suprise for her and her cousins came back to the house after we told her they had to go home... she was so happy everyone was here and it was the best time ever. After everyone left my sister stayed for supper and we talked, laughed, ate and had fun. BUT Miss Sarah fell asleep around 6???? Oh no that can't be good... sure enough the fever from the H1N1 popped back up to 102. Oh no! We spent most of the night watching her.... waiting for it to come down before we went to bed but Scott couldn't lay down.. the pain was just too much. 5am this morning I found him sitting up on the couch trying to sleep... oh no this isn't good. Why? So after a trip to the walk in clinic today and meeting the biggest idiot that every walked and called himself a Doctor Scott is now at the Emergency hooked up to an EKG waiting for a Dr to come check him out.
I"m sure it'll be muscle related... it has to be... I've got a sick kid on my hands... and also Cody pulled a muscle in his back while he was sleeping so if Scott is sicker then a pulled muscle what am I going to do? He's my rock... my piece of steel he calls himself... he has to be there for me... I can't do this alone!!! He knows I can't so he'll be fine!

I promise.....

2009-11-12T16:58:00.001-04:00

Sarah's been so freakin sick with this H1N1 Virus that it got me thinking. She's been through so much in her almost 8 years that some day she'll need to know everything she's gone through. So the other night while we laid in bed talking I told her when she's either 19 or 20 that her and I are going to grab a blanket, a cup of tea or coffee and sit outside on some hot summer night on the swing on the deck and talk till the sun comes up... she asked me to promise her I would never forget and I asked her to promise me too. We both pinky swore. We have almost 12 years left but we will get to sit and watch the sun come up with a doubt.
Love you baby girl... we have a lot to talk about.

H1N1 came to visit

2009-11-11T10:37:00.002-04:00

Well it happened my biggest fear and there was no way to avoid it I guess... H1N1 came and paid a visit 6 days ago and it hasn't left yet. But she's fighting it... just like the fighter she is. The fever didn't come back today but boy has the sore throat and cough hit her hard. Stupid flu. But at least she can finally stay up for more then 5 mins at a time. We spent days pretty much just laying around doing nothing... once in a while I was able to sneak in enough alone time to clean a room but that's been pretty much it.
Day 1 brought on exhaustion and a fever of 101 and 102
Day 2 brought on exhaustion and a fever of 101 and 102
Day 3 brought on a lower fever, exhaustion and the start of a really bad sore throat
Day 4 brought on a lower fever that went away during the day and peaked at night again, exhaustion and oh a really bad sore throat... oh it was so painful for her.
Day 5 brought on a low fever, peaks of energy, still has a sore throat and a terrible start of a cough
Day 6 has brought on no fever, energy level back up, very sore throat and a terrible cough.
The Dr at the assessment clinic said she's on the mend but it will take days longer before she's recovered.
Now we keep her rested, let her play when she wants to, keep her energy level up, try to get her to eat... she's lost almost 2lbs now cause she's only eating once in a while.
As long as the fever doesn't return and she takes a turn then we just do what we do best.... wait!
So you little shit H1N1 you got her but you didn't get her so that's all that matters.
Now your done you can leave... your visit is over now get out of my house!
So far everyone else in the house is symptom free... please remain that way!

High level of stress

2009-11-08T20:13:00.001-04:00

Not only is she not feeling good she has this extremely large wart on the side of her toe which causes her extreme anxiety... just the mention of it sends her into screams like we've never heard before.
So add both of these to the mix and try to get her into the bath tub and you have a struggle that lasts for almost half an hour. She finally gets in there and by the time you get to breath your exhausted but she's playing... instead of a shower tonight we decided it would be good for her to soak in a tub and relax... take some stress away after all you've been fighting a fever off and on for 3 days now.
But boy does the screams start again when its time to wash her hair..... why? Why does such high levels of stress cause such high levels of stress. You can't avoid the hygiene part of life cause she's not feeling good but boy does it make it more difficult to handle!
Oh please god let us have a break! I'm tired.

So what's up with that....

2009-11-07T08:52:00.002-04:00

So she comes home from school. Tells Nanny she's not feeling well.. she has some pain in her belly but nothing major and off to sleep she goes? When I get home its pretty much the same thing. Laying in my bed sleeping off and on. Not much energy at all. OMG is it the start of H1N1... there were 13 kids out sick today in her class alone. By 9pm a fever is starting to show. Motrin to bring down the fever and off to sleep we go. I wake up almost every 1/2 an hour to put my hand on her head... she feels warm not overly hot and no cough... no nothing. By 5am she's up and looking for something to help her.... the fever is up to 102 but still no cough, no trying to throw up... no her body doesn't ache either. More Motrin to bring the fever down. By 8am she's feeling great but she's having trouble pee'ing.... OH! its a track infection... oh wonderful... its minor and expected since she still has trouble. I'll write it down on the calender to remind me when we take her back to Urology in Dec... they'll want to know.
But since the H1N1 is so strong and like 10,000 kids were out of school in the HRM region yesterday I'm going to say "oh its just a UTI... its not the big H1N1 that we fear so much that she'll get". Pretty sad when the fear of the H1N1 has taken away the serious issues of a UTI and we can just say "oh its just a UTI... we can deal with that" at one time a UTI would put us into total fear of kidney scares but its nothing now that we know what to deal with... we just do what we do... deal with it.
Stay away from her H1N1..... PLEASE!

What a mix of everything

2009-11-06T05:56:00.003-04:00

So why did the anxiety and depression last into day 2? I had no idea why? We had no idea why? It was a normal wake up call... got dressed but wouldn't come out of her room... I thought that was strange so I gave her her breakfast in her room... no big deal. Went back in to check on her breakfast was all done but still didn't want to come out? Went back to check on her and there she was in tears at the end of her bed curled up in a ball... Momma I can't do this today... Oh I know baby its ok, lets get me to the bus and we'll take it from there. Off we went. Standing there with her head buried in my stomach... oh baby I love you its ok I understand. Then I get on the bus and she jumps up into Daddy's arms and puts her head into his shoulder.... I can tell she's crying. Oh baby I wish I could make this go away... why is it into day 2... it only ever last one day!
A phone call at 8 telling me she's on the steps crying and he had to leave her for Nanny to try to calm down... its ok baby we understand.
All day I worried. All day I wondered what to do. All day I wanted to call home but knew if I did I would just make her more upset. What was it..........
Then at 430 it hit me like a ton of bricks.... Tuesday night I talked to her about her birthday. We would go to a restaurant and then either go bowling or play mini golf... her choice. OMG what was I thinking... I left her to pick. That's why she woke up Wednesday morning asking me what she should pick and I told her not to worry about it right now. That's why she went to bed Wednesday night asking the same thing. That's why she woke up Thursday morning asking me what she should pick... OMG its been playing on her mind... OMG I forgot how hard it is for her to celebrate her birthday... the gifts... the excitement... the stress for her!
Off I go home... baby girl I called the bowling alley we can't go cause the lanes are all filled up. Oh ok Momma we will play golf.... laugh, smile, jumping around.... did it break! Did making one simple choice for her instead of allowing her to make it make the difference?
In less then one hour when she gets up well know won't we......

Maybe some day!

2009-11-05T06:00:00.005-04:00

So yesterday was only 1/2 day for the kids cause of parent teacher interviews in the afternoon. I thought "wow cool, kids will get home early, enjoy their afternoon home, I would stop off at the grocery store to pick up a few things, Scott and I would come home and have a nice evening".

At 1pm I get a phone call from Sarah. She's in tears. Momma I need you. Momma I cry when I think of you. Momma don't make me do this today. Momma come home please I can't stop crying I need you. A good 15 mins passes and all I can say is I know baby but I can't come home. Momma don't go to the grocery store tonight. Momma I need you to come home on the 5 o'clock bus. All I can say is I know baby but I have to go to the grocery store. Now Momma has to work I have to go now baby.
2pm... another phone call same thing all over again
3pm... another phone call same thing all over again.
This time I'm in tears... I can't leave work and run home to her. She has to learn to control this and me being home and running to her would just basically give into her fears and anxiety. By the time the 3rd call happens she's isn't listening anymore and won't let me off the phone. I have to do the worse thing in life... hang up on her or it won't ever stop. Oh god what kind of mother am I... a mother who has a job to do too... everyone around me can hear me... I can't whisper on the phone she's hearing impaired... I can't refuse to pick up the phone what if its an emergency... oh god what am I suppose to do.
Why are these calls coming.. I'm at work.. why is Nanny dialing the number. Stress.. I'm her mother and she's out of control. Nanny will never say she wants this to stop. Nanny will never say I can't take it anymore. Nanny makes the call hoping that I'll be able to calm her down I guess. I'll never know cause you can't talk to Nanny... she won't tell you... she'll never open up about how hard it is but I know how hard it is... I live it too... Nanny gets to her wits end and doens't know what to do... no different then the rest of us.... help is all we want so Nanny dials the phone.
Text to Scott... I can't do this anymore... I need to leave my job... I can't take the stress this is the 3rd day like this in two weeks.... I'm in tears please help me. Scott calls and tells me not to answer the phone... he's right if its an emergency they will call him. Ok I'm feeling better, he's right just ignore the call.
4pm - no call
430 I'm done working... cell phone rings... its home.. ignore it... your on the bus you can't be having that conversation with 50 people listening to you.
5pm... still on the bus... another call... just ignore it... text to Scott.. omg call #2 and I didn't answer it.. what kind of mother am I.
515... at the grocery store... another call... don't answer it.
530... waiting for Scott to meet me.... another call... don't answer it! But my baby needs me. She's in tears.
Scott picks me up and I call her... Momma you hung up on me I only had one more thing to tell you... I need you Momma.
I know baby and then I explain I'm at work and I can't be having these conversations at work please understand baby I didn't want to do it. What Momma, I don't understand what you are saying... its ok baby I'll be home soon... ok Momma I love you. I love you too baby.
545 I walk in the door just like nothing had happened.... we have supper, we deal with the puppy, we talk about school, we watch TV, she plays on the computer, off to bed she goes... exhausted!

I never expected that to happen... I didn't see it coming this time.

Another bad day over a done with... hours of crying for her Momma are done cause Momma's home now.

Not sure how many more days I can do it... but every time we just do it... we make it through the moment and continue on... that's all we can do... maybe some day those days will come further apart and maybe some day those days will disappear and go away for ever... maybe some day she will be able to be a kid!

Maybe some day.

This is how it goes....

2009-10-31T10:51:00.003-03:00

I'm seriously exhausted. Why? Nope not from this problem I've been dealing with for 10 months now... OMG its almost 11 months... Ok Trudy on with why your exhausted.

Cause I'm old and I got a puppy. Simple as that!

Ok so I get up out of bed after Miss Sarah had an anxiety attack yesterday that was completely out of control so I let her sleep with us last night so I woke feeling like someone slept on my neck... oh someone did... 48 lbs right on my neck all night! So puppy decided he wants to get up and go out for a pee. No problem I really don't care if I have bed head today or not... off I go outside bed head, housecoat and fuzzy slippers... pee dog I have to walk back in the house! LOL Off I come back in the house with the dog bitting on my fuzzy slippers but I make it. What's that noise oh its baby girl screaming that she's awake... to me its annoying to the dog its a sign that he needs to play!! Ok Mickey make sure you go crazy trying to get he. Sarah please just let me finish my coffee and I'll help you get dressed. She takes up 23 1/2 hours of my day and now I have a puppy trying to make her into a puppy. Ok so think of this... I'm 4' 11" overweight old women who didn't sleep, and I'm holding back a puppy with one hand and trying to get his teeth off her feet with the other hand. Ok so we make it into her room.... he runs in and grabs the first article of clothing he can find... so here goes the old women running out of the room trying to get the article of clothing while all I can hear is screams from the poor girl who thinks the puppy will eat her clothes. So I finally separate the two... she gets dressed and out of the room we come.
So now its time to figure out how to hold the puppy back with one hand and elevate the 7 year old into the air so the puppy does chew on her feet. Oh and I haven't had a shower yet either. Ok puppy stop and take a break... we spend 20 mins throwing a ball... why haven't you calmed down yet.. OMG how much energy do you have. You must be taking drugs while asleep in your kennel all night... Seriously calm down!
So breakfast for the baby girl and off to the shower I go. That's it shower and take the puppy for a walk... sure why not it only feels like my insides are going to fall out when I walk but I have to get him calmed down.
Off we go... and boy did he do good... good at taking us for a walk.. he thinks he's a Shepard or something and he's not much large then a big cat right now. Back we come... he's still not energy drained yet so lets go in the back yard... how do you find all those rocks... god sake even the lawn mower doesn't find as many rocks as you do dog. Oh and while your there sure go ahead and attack Sarah's feet while she's swinging on the swing....
Off we go into the house and nope your still not worn out yet but finally after an hour and half of walking, throwing balls, playing in the backyard your finally asleep. OMG dog an hour and half of exercise before you wore out.... are you serious is this how it goes... I don't have an hour and half a day to wear you out and how long will this last will you only sleep for a short time and then look for more exercise... oh dog you need something other then me to calm you down!!!!
Oh Scott what's ya doing????? LOL LOL
So I now have an advil in me to get rid of the pain in my neck, hands and shoulder from holding back on his leash while he was walking us... cup of coffee is almost gone that I made to wake me back up after spending an hour and half trying to calm him down.... and boy I could use another shower.... well one good thing I've lost another 5 lbs since we got the dog... and with the time change tomorrow maybe I'll get a chance to walk in the morning before the house wakes up... yeah maybe not!!! LOL

My strength came from....

2009-10-28T21:31:00.002-03:00

Wow its been 7 years... oh it must be 7 years now that I was doing what all new mothers do now... on goggle typing in that my daughter was hearing impaired and I came across a website with bulletin boards... I don't' remember exactly how we met but there was a mom there that had a daughter the same age as my daughter and we started talking.

I remember feeling like I was all alone, scared, afraid of what our future would bring and so afraid of the unknown. This friend and I have never met but I feel like she is my strength. I never talked to her in real time. We never spoke on the phone but she was there for me when I needed her. At no matter what time of day I was able to send her an email... she was there to listen to me... she never judged me for my fears... she never told me how to feel and never told me how to react to anything... she reminded me all the time that I needed to stay strong and she gave me the ability to vent when I needed to so the rest of the day I could stay strong.

Over the past couple of years we haven't talked as much... I'm not sure why.. maybe she gave me so much support that I felt strong enough to stand on my own but boy do I miss her at times. I just don't want to bother her all the time. I think about her all the time and how much I would just love to send her an email and ask her what I should do but I felt there is never any good news in my emails so maybe I'm bothering her... maybe I'm depressing her... I drafted so many emails but I couldn't figure out how to just say Hi... someone asks me how things are I have a tendency to tell them and since I'm now into my 4th cancer scare and waiting to find out I don't want to say nothing again but bad news.

Well I was shocked tonight to get an Email from her after I sent her a joke email...

She needed the laugh as shes going through some really serious medical scares herself... for a few months now all I've been thinking about is myself when a friend of mine is going through this too... please understand my friend that even though I haven't been emailing I'm still here for you... I want to listen.. I want to tell you your in my thoughts and I want to thank you for being there for me for so many years... if it wasn't for you I would never have turned into the Mother Warrior I am today... my strength comes from you... your words were there for me when I needed them and I'm here for you when you need me.... anytime day or night.

Hugs and Kisses
Me

Well this is it

2009-10-28T06:20:00.002-03:00

Well this is it.. .after 10 months of hell, 3 biopsy's, hormone injections at a rate of 300 times what you normally would get, countless handfuls of medications, unable to work for a period of time, no life for me and Scott, countless hours of sleep, countless hours of not being able to sleep, crazy number of trips during the evening to the bathroom, a trip to the Emergency, several rounds of blood work, three different surgeons... all hoping its there turn to operate, 5 different Dr's in total... its all coming to an end.

One more simple test today at noon will tell them if there is any lumps and bumps on my bladder and exactly where my uterus is sitting so she has no surprises when she operates.

In two weeks I go back to see her for the results... if all clear with my bladder then the surgery gets booked.... fingers are crossed for Dec... if not then early Jan.

Regardless I just want a date.... with a date I can steer ahead and get through this one day at a time.

When did it happen....

2009-10-24T10:04:00.006-03:00

When did it happen... when did I become the maid! Maybe maid isn't the right word to use cause maid is a title for a position that you interview for, a position that someone comes into your home to clean and take care of the household duties and you pay that person for. I don't get paid so maybe maid isn't the correct word to use.

Ok so last night I find myself into a conversation with my husband about how difficult it is to get help from him or the kids. Yes I caught myself using the word "help" like its my job and I"m failing at doing it so I need help.

It started with a painful trip to the grocery store with my mother-in-law... painful cause I'm not suppose to be pushing a heavy cart and boy did I pay for it. Do you think when I called my husband to say "you stay in the woods working on getting ready for hunting season with your son" that he would say... but your not suppose to push the heavy cart. No instead I got "oh thank god then I don't have to rush"... so glad I can make his day!

So home we come.... phone call to hubby to let him know we are home and the carrying of the grocery bags is his job not mine but nope he didn't inform the 16 year old... gee brain dead husband sorry you can't think and breath at the same time... guess you'll have them all in before the 16 year old even receives his notification!

So after putting away the groceries and all the food for the party tonight (its the inlaw's 50th wedding anniversary) it was time for supper... but instead of me being able to enjoy my supper I hear "mommy mickey pee'd on the floor". Well after the disagreement Scott and I had the night before about who cleans up after the dog... the person eating their supper or the person who is done eating" Scott decided since the two of us were eating at the same time but at a different pace he would have to lick his bowl clean to try and slow down the process! Well I did laugh.

Ok so now its time for a moment of a break before dishes.... Miss Sarah wanted me to hook up her new toy but I had to do the dishes.... so I hear this faint voice in the kitchen from behind his laptop say "oh leave them I'll do them". Well I could have exploded...... that tone of I'll do your job tonight!

So after I hooked up her new toy off I went into the kitchen.... not a dish started. After I started working on them I got a notice served to me "I'll wash but I'm not drying".... well, I broke my new promise to shut my mouth when idiots say something like idiots do!!!!

Sure you can avoid drying the dishes and I'll avoid cleaning the toilet too... I'm cleaning the sink only I'm not cleaning the toilet. And wait till laundry time "I'm only washing the socks... I'm not doing underwear anymore" and when I sweep the floor I'm only sweeping the left side of the room..... when did all this go wrong.

When did I become the doer of the household duties! When did I get elected to have to ask for help. I reminded him that he lives here too. I reminded him that those kids are his too. I reminded him that when I ask his 16 yr old son to help I get moans and grones and when I ask the 7 year old to pick up after herself I get complaints. When I ask the husband to help out I get smart ass comments and complaints.

So as I reminded him since I see know that we each have choices.... well lets say I choice to tell them all what they are doing and god help them if they choice to complain!!! LOL LOL

Let the fun begin!!!

I've got no right

2009-10-22T05:56:00.002-03:00

I've got no right to be so dam snappy at my kids and husband. Seriously I don't. Oh people will disagree with me and say stuff like oh look at what you've been through or look at what your going through... but I don't care anymore when I snap at my son for no reason at all when its hard enough to get him to talk to us anyway its just unfair to him. I feel guilty and honestly stupid that I've done it. I come home from an extremely busy day, I fall asleep on the bus I'm so tired, I can barely move for the pain of standing on me feet for hours at a time and instead of being thankful I'm home with a good husband and two great kids I snap at everyone. Sarah's on the phone with me and I'm hollering at her before I even get on the first freakin bus. Then Cody comes out of his room finally to ask a question and immediately I snap back with an attitude filled answer for him... he doesn't understand my reply so instead of being a good mom and explaining it I snap some more and make him feel like his question was stupid. OMG why do I do it? Now I feel like a piece of crap cause I'm so freakin stupid... what makes us unable to see what we are doing wrong till its already done! I know its called reacting before you think but regardless of what its called its stupid.... and when you say stupid say with it meaning cause that's how stupid it is!
Learn next time you idiot... there is nothing more important then your kids.

So what's been going on since....

2009-10-19T05:53:00.002-03:00

So what's been going on since my last Blog... well that's easy to sum up in one word! STRESS!!!
Yup... ain't nothing better then a dish full of stress in our life.

So Sarah felt so much better the following morning when she woke up but I didn't. I was still pissed off, I am still pissed off at how easy it is for the school to fail. I thought their standards were as high as mine! We kept her home the next day just to give her time to rest. Something about spending 6 1/2's trying to puke your guts up seems to be a good reason to have Mom and Dad let you stay home from school. She went back on Thursday and had no problems at all, as we knew she wouldn't but she still talks about it and we knew she would.

So Friday was my big day..Urology apt I've been waiting for for so long. And of course there's always the worry that there is something else wrong so why should this apt be any different. Now I need an Ultrasound on my bladder... checking for lumps and bumps I guess and as soon as its done then the surgery can be booked. Sadly the last surgery date till the end of the year is Dec 10th so to get that date all this needs to be done before then.... let the race begin! If not then the surgery will be the first of Jan. It sucks to wait that long cause I really need this to end but like she said... I can take your uterus out that's not a problem and it will make the bleeding go away but I"m not 100% sure that's where all your pain is coming from so we better do one more test to be sure. Yeah ok!

Then on Saturday we went to the Hard of Hearing Support Group that I was asked if I would be interested in joining... oh my goodness yes, a chance to talk to adults who grew up like Sarah. A chance to see what her world is like and to appreciate and ask questions... oh I'm there. I can honestly say I'm shocked after each meeting of how much I don't know about my daughter's world but I'm learning... I'm trying that's for sure but I think I have a life long road ahead of me.

Well its been a strange week to say the least... my mother-in-law took a nasty fall from a step ladder she'll be fine but she's pretty sore that's for sure. It was very hard to see her laying on the floor having trouble getting up... I am so thankful she wasn't hurt anymore then she was... god she could have knocked herself out on the cupboard or broke something... boy with all our bad luck I tell ya we were pretty lucky that she's ok that's for sure.

Well its time to get this week started.... wonder what this one got in store for us!

I'm so pissed off

2009-10-13T21:50:00.002-03:00

I'm so pissed off.

Ok so I go back to work after being off for 3 weeks and of course I had a painful day. I'm tired. I'm exhausted but I kept my chin up. I tried my best not to be pissed at the pain but to appreciate how happy I should be to be able to feel the pain!

Just after 2pm Nanny called to say Sarah was getting sick... I talked to Sarah she said she wasn't allowed to go to the learning center? What! I called the school. Why not? I was told oh it was haywire there with today being photo day and the duty kept her in the classroom.

OMG do they not understand.

Thankfully I got a drive home from work so I got home early. I knew what I was coming home to but instead of being all worked up and feeling frustrated I just went with the flow and got home as soon as I could.

Little did I know how bad it was. She feel asleep for Nanny, thank god. But when I got home oh boy did it start. 6 1/2 hours of doing pretty much nothing except trying to throw up. My god she's exhausted.

When her pain was in between making her throw up I found out she told the duty teacher she needed to go to the learning center but she told her no so she had to sit in the class while kids ate. She could hear them. She turned her head the whole time so she wouldn't see them. My god she must have felt trapped.

I told her next time to walk out no matter what the duty teacher sayes.

I want to know where the learning center was. They know it makes her physically sick to watch someone eat... why didn't they come down and get her?

I'm so upset. I'm so heartbroken for her. She was in so much pain tonight Her picture day ruined and now the memory she has is asking me if she should go to the hospital...

Oh do I blast the school!

Wow what a breakthrough we had

2009-10-09T06:27:00.002-03:00

Wow. Ok so yesterday Sarah gets home from school and I tell her I'm going to get my hair cut. The hormones they have me on make my hair fall out at a crazy rate... I'm tired of combing it to take out handfuls of hair.
Well she wants her hair cut to. Are you serious. Yes she is.
Sarah didn't have hair for more then 2 years then when it came in it came in so fine and curly but as she got older the longer it got the straight hair too over. Then so did anxiety and ocd and before we knew it there was no way she would let us cut her hair, just combing it took us a couple of years for her to get over the fear but we never gave up and the past year we were able to comb it daily but that was about it. It just kept growing and it finally hit her bum and every morning we would spray it with conditioner and spend 15 mins or so trying to get the tangles out. That was after she woke up and unwrapped it from her body. Swimming during the summer was a nightmare.... long wet hair draped all over her body. Getting in the shower and washing it was bad enough... getting out and having to dry it was hell for her.
So off we went. She was in such a good mood. So happy to get it done. But when it came time the answer was NO. She pulled me aside and said "Momma, I'm scared and nervous" I know you are baby and I'm here to help you but you have to decide, you can't say No then decide Yes later... we won't be coming back. So after a few more minutes of deciding off to the chair we went. She sat on my lap and the hair dressers were amazing. They even had her laughing. Off it came... up to the top of her shoulders.
Oh Sarah you have no idea how big of a breakthrough this is. How proud we are of you.
I told her she looks more grownup now and she told me she looks beautiful.
You sure do baby and we love you.

Nervous breakdown in the making

2009-10-07T22:24:00.002-03:00

Ok so I ran out of dog food today. As most anyone reading this, I don't have a driver's license... can you image this hyper women behind a wheel!!! Oh gee be thankful I don't.
Ok so I ran out of dog food today... Scott can you stop on the way home... oh never mind I need to get out of the house I'm going to loose my mind if I don't get up and move.
So off we go at 6pm... we put the puppy in his cage and out the door we go.
Stop #1 - pet store for new bones for the puppy... I can't take the biting anymore I'll try anything to stop him. I'm in there like 5 mins and I'm ready to leave but Scott and the kids (OMG Cody came with us this time!) wanted to admire the other animals... you know the good ones behind the glass wall.. till ya get them home and then they show ya what life really is made of. Ok I need to leave.. .can't stand up any longer I need to sit down. Lets go. Off we go.
Stop #2 - grocery store #1 (yeah see how I called it store #1!) for puppy food. Not one freakin bag. What do you mean I just walked into the store with two kids in the pouring down rain... easier to walk in then explain to Mr Conway what kind to get! Already guys lets go... back out in the rain... running down my back as my ass is stuck out of the car strapping Miss Sarah into her seatbelt cause the two guys who are already in the car can't possible do it for me! Off we go.
Stop #3 - grocery store #2 (yeah your getting it now... I called it store #2) ok kids why are you coming with your mom.. its raining.. stay in the freakin car oh that wouldn't be fun how would you see the rain dripping off my nose if we didn't walk in the rain. Ok so now I need to send someone an email... not one bag of puppy food in the store... did someone call you before I got there... is this a joke! Ok kids lets go back out in the rain... yes Momma's limping now, yes Momma's in pain... ok lets go. Off we go again.
Stop #4 - grocery store #3 all the way across town by the way... hey puppy has been in his cage for an hour and half now and I still don't have the dog food. Ok kids I'm putting my foot down as hard as your sick momma can... stay in the car. Mom get me a drink. Mom get me a drink. OMG now I have to walk from one side of the store to the other... drinks under one arm and thank god puppy food under the other. I swear to god when I got to the cashier she looked at me and almost offered me a seat or at least a cup of coffee!!! LOL Ok back out in the car in the pouring down rain... but at least Scott sees me coming out of the store just too bad he had to stop to let someone cross the parking lot had that not happened I may not have gotten so wet. Ok so lets go.
Now we are home... puppy is in his cage, Momma is having a smoke outside before I go in to shake my wet ass like a dog! LOL
Hey what's that you pee all over your bed.... sure why not. And when I'm on my hand and knees cleaning up the paper and changing your bed you make sure you bite my toes, nip on my boob and while your at it... grab the blanket out of your bed not once but three times.
What's that Sarah you want a freezie... sure why not... what's that Sarah theres a hole in the bottom so when it melts it drips all over your clothes... yes Sarah have a breakdown I just don't think I've got enough to clean up when you slammed the freezie on the table and it exploded all over the wall.. oh puppy yes please eat the paper towel I'm using to clean up the freezie while I'm trying to ground the 7 year old and send her to her room and what's amazing is I found out how to turn the TV off with my foot and didn't knock the TV over... sounds terrible it wasn't violent or anything but my foot just happen to find the "off" button on the tv cause for some reason the remote was not were to be found, the dog was still eating the paper towel and the cat walked by so she got attacked or did she attack.. I have no idea but when puppy runs into the already upset 7 year old room and you try to get all that stuff away from him it kind of reminds me that maybe I should reconsider prescription medications... oh and don't forget puppy make sure you pee on the living room floor cause I haven't had a good dose of pee under my foot in what several hours.
So after the 7 year falls asleep. The puppy calms down.. gee couldn't create that memory for her of a wonderful quiet dog asleep on your floor could ya! So off I go to the couch, remote and laptop in hand... thank god both of them still work and I'm left alone with the thought of how many bags of dog food I really can stock up on so I never have to leave the house again... LOL
Hey I just remembered I didn't have supper yet! Oh well... toast and heartburn before bed...

So it was a nervous breakdown in the making... but its all about creating memories.. right!

Has it gotten the best of me...

2009-10-06T08:14:00.003-03:00

Yesterday was a pretty rough day to say the least. Not only did Sarah have an anxiety attack in the morning, the school called home at lunch time to say she wasn't' feeling good but at the advice of her Dr we tell her to continue on with her day so she can see that she can beat this, which just breaks my heart cause as a mom you want to protect your child not keep her in whatever is driving her anxiety.
Then a phone call from the people who make the decision if I qualify for disability. They have to access the level of pain I'm in and if work can accommodate me some how to get back to work before my surgery.
Well that just about did me in. I'm not one to live my life according to someone else telling me how I feel. For 19 years growing up I was told when I could eat, think, breath, speak, sleep and how to react to everything. I was told when to cry and when to laugh. I was told to shut up and to speak.
And for 40+ years I've fought people who tell me how to feel only in the past handful of years have I allowed myself to feel what I'm feeling. So to be told by someone that your pain might not be justified just about put me over the edge.
I'm a control freak by nature it took months and months for me to allow this problem I have to control me, I finally allowed myself to feel the pain, to see myself as someone who is in pain and needs to take care of herself and the insurance company has now done what I had feared the most.... unvalidated my feelings.
My god how can one simple phone call make me feel like I'm wrong... how can one phone call make me feel that taking care of myself is so unimportant.
I guess I'll call it a side affect of growing up in the conditions I did but it made me so mad, pissed off and made me feel worthless. It took months of me suffering in pain, suffering for hundreds of days, biopsy after biopsy, test after test forcing myself to accept the fact that I'm not feeling well and you need to take care of yourself before you are unable to take care of your kids.
And then bang! One phone call and someone saying "we need to assess your level of pain". I tried to explain the bleeding and how its lead to me being anemic but the reply on the other line was "oh that's a social problem we need to access your level of pain and make recommendations to your employer to get you back to work" OMG do you know how much pain I am in every freaking day. Yes I can make a bed and do a load of dishes but not without needing to sit afterwards. Do you know what a full day of doing anything will bring at the end of day. Do you understand what its like to lay in bed in tears every night awake from the cramping, the pressure, the pain?
But more importantly do you know it took me months of suffering through this to accept that it has controlled me and to allow it to be what it needs to be and now you are saying I'm wrong.
Well go ahead...world do what you need to do cause after a night of me being mad at everyone and laying in bed trying to get the pain out of my baby girls stomach and get her to rest so she could fall asleep I snapped myself back into the real world.
Life may give you choices that you don't like its how you deal with those choices that matters.
I'm done being mad.
I'm done being mad at myself for letting my body break down and take over who I am.
I'm done being mad at that poor women who is doing her job.
I'm done being mad at the manual the poor women is looking at when she was asking me those questions.
I'm done being mad at the puppy cause he pees on the floor.
I'm done being mad at my kids when they don't listen to me.
I'm done being mad when the pain is so bad I can't walk.
I'm done being mad when I wake up after I feel asleep sitting in a chair.
I'm done being mad.
I am better then this... I don't have a life sentence... I don't have cancer... I'm not going to die cause I need surgery... I'm not going to die cause I'm in pain.
I will smile.
I will laugh.
I will spend time with my kids.
I will listen.
I will cook supper.
I will pay attention to my husbands day.
I will scoop up the poop and continue on with my day.
So what I can't go for a walk or walk when the pain is so bad. So what if going back to work will bring on pain I can't manage. So what if staying home means I have reduced pay. So what if I'm so tired I need to sleep all day.
The most important thing is that my kids have memories of their mom laughing, smiling, reassuring them that they are good kids. Protecting them. Wanting them in her life. Allowing them to feel safe in their home.
My kids will get and deserve a better life then I had growing up. My kids will not be sick in 40 years time and feel like I felt yesterday when that call came. They will hold their head up high and know that they are the best people in the world and this will happen because their parents will set an example for them.
Their mom and dad will smile again cause their mom will smile!

What's keeping me going?

2009-10-03T22:57:00.002-03:00

Seriously... when I woke up this morning I said on Facebook it was going to be a long day and boy was I right.
I can't explain how hard it is to keep up with a puppy, a 7 year old, be a housewife and a mother and be sick! Where am I going to get the energy tomorrow? I found myself falling asleep twice today... actually I lie... I found myself waking up twice today I don't even remember closing my eyes... that's how tired I am. The exhaustion is crazy. I was just ready to take nap #3 when the dog needed to pee so outside I went. Then it was time for supper... so yes I cooked more food then I needed to cause if I had sat down to wait for something to cook I would just slip into a sleep.
Its becoming dangerous, in my opinion, I seriously don't remember falling asleep.... what was Sarah doing while I was asleep? No idea... I woke up to her rubbing my face and saying Momma wake up.
Please don't let me be so freaking tired tomorrow... as some point this anemia has to break doesn't it?

Being like this sucks

2009-10-02T14:35:00.002-03:00

Well I hit a milestone today... day 50. Day 50 yes of being on my period. 50 straight days of pain, bleeding and well I have to say not being as cranky as I thought I would be.

I called the surgeon's office today to let him know.... his answer was "keep up with the medication and take iron". Yeah whatever!

No amounts of iron makes you feel like yourself when your in pain and bleeding every freaking day. Thank god I got a good husband... I went to bed at 9:30 last night, he took care of the puppy for me with his last pee and poop (well Scott always takes his last trip out cause I take his first trip) and then put him in his bed for the night so fast asleep I went till 6:30 this morning when I had to get up to get the kids off to school.

So this morning I spent all morning taking my time making beds, doing dishes and doing some laundry..... all morning to do what it use to take me a half an hour to do!!! All morning so I don't get so tired and in so much pain I need to go to bed. But it didn't help today.... by noon I was feeling exhausted but I only made it till about 1:30 and I could feel myself going to sleep. I missed meeting Sarah at the bus cause I was a sleep on the couch. But thankfully Nanny was home to get her.

I'm so tired.... I need sleep... I feel like I need sleep forever. At least laying down for an hour or so takes the pain away and stops the cramping now cause I"m home all day instead of pushing myself being an employee, fulltime housekeeper and mom. But no matter what I do on bad days I need sleep!!!! Please let me find away to sleep and stay asleep till I can wake up not feeling like I need to sleep again.... exhaustion and no amount of iron will fix this... I can't possible replace more then what I"m loosing.

Oh well... hopefully when I see the 2nd surgeon on the 16th he should have my date for me... please god I pray for a date... please let me know this is going to end at some point soon!

Well its over for now

2009-09-30T22:27:00.003-03:00

Well its over for now.

Yesterday was one of the hardest days in our lives. Did you ever just have that feeling? Well that feeling hit me yesterday. We talked to the hospital about giving Sarah something to relax her before they took her into the OR. She's just so nervous and so worried about everything its just not fair to her to put her through this. She had medication to help her relax before several of her past trips to the OR. But this was different, every other time she would be laughing and carrying on while she's feeling the effect of her medication. This time she was sad... very sad... crying and telling me she needed me. It left me with an uneasy feeling for sure. Off the OR she goes... the surgery was to last an hour. Exactly one hour later the Dr came out. Excellent news... its not glaucoma.. OH THANK GOD I think was the reply I gave. But as he said before he took her in the OR, I'll be back out to tell you what its not! So what is it... we have no idea and won't for another year. In a year she'll go back into the OR and have all the pictures and tests redone. They will look at this year and compare to next year and see if there is a change. In the meantime she'll return to the clinic for one more test in a couple of weeks... her lens is rough... what that means is basically it could be causing her light issues or it could have been because of the procedures they did. So like the Dr said in this case... no news is good news.
But we went through this before several times... no knowing if there is a problem developing and sitting on the edge of our seats for another year waiting to see! But for now we are so thankful its not Glaucoma or a tumor! Thank you god.
But the worse part was yet to come.
Every time after the Dr leaves we usually wait about 1/2 hour for the recovery room to tell us to come in cause she's awake. But this time... 1/2 passes and no call... 45 mins pass and no call... other parents who's children went in after her get called in but we don't. An hour later we get called in... I wasn't feeling good. This happened once before and it was terrible when we seen her and this time would be no different. As we walked down the hall we could hear her screaming... oh no screaming isn't good. Sure enough we walk in and she's trying to throw herself off the bed. OMG this happened once before but she was smaller so it was easier to hold her. This time it wasn't good at all. The thrashing... the screaming... the trying to hurt herself... not being able to see while her eyes are open... looking in her eyes and knowing she isn't there... her pounding everyone who goes near her... OMG how are we going to handle her.. get her on the floor.. get us in a quiet room... help her pass this... 45 mins of physically restraining her turned quietly into 3 hours before she could form a word, before she could get her head off the floor, before she could hold her mouth to take a drink.... 3 hours of Scott and I taking turns on the floor of the recovery room while her body wore off the medication and she was able to come back to us. 3 hours of hell to say the least. I found myself loosing it at first but quickly went into... oh no Mom you need to hold yourself together for her... you and Dad need to be there every second.... talk to her... tell her silly stories... call her by her name.... didn't matter that we couldn't feel our ass after sitting on the floor thing long what mattered was that we were there for her every second of every minute of every hour that she needed her mom and dad with her. It matters to us.. to her well not so much.. she doesn't remember a thing... not one moment of it... Thank God!

So today I think I needed her home, she wasn't allowed to go to school anyway.. hospital suggested we keep her home and keep an extra eye on her but having her home and spending time seeing her prefectly being herself was what Mom needed!

After days like that I know why I'm here.... cause no one else would be able to do what we do for her... she needs her mom and dad with her every step of the way and that's why were are here!

We love you babe and so happy to have you back with us.

Well here we go

2009-09-29T08:05:00.001-03:00

Well here we go. Less then 2 hours before we leave to head for the 10th trip to the Operating Room. This time its to see why she has an enlarged optic nerve with a deep pocket behind her left eye.

What will the answer be? I'm not going to even try and guess I just pray its nothing. Please let her have a moments peace!

What's in store this week?

2009-09-27T19:51:00.002-03:00

Well only two more sleeps till Sarah's 10th visit to the operating room. I hope and pray its nothing and try to do positive thinking that everything will be ok and we'll get good news after this trip but I don't always get what I wish for but hopefully this time we will.

So yesterday we picked up our new puppy. His name is Mickey and except for his ability to chew on our clothes, garbage bags and how much he enjoys trying to get into the cat's litter box he's been doing really good. I bought a new garbage can today to take care of the garbage problem. Scott's building a gate for the bathroom door to keep him out of the litter box. Too bad getting him to stop chewing on our clothes wasn't as simple.

Oh and I still feel like crap and hate taking my medication every day when it hasn't worked and on top of it all I have a bad cold.... since I can't take cold medicine and my other pills at the same time I guess I'll be hanging onto this cold for a little longer then the kids and Scott did... oh well!

Well its time to wake up Mickey from Sarah's lap and get her ready for bed.

I don't think I'm far from that either!!!!

No other options available

2009-09-25T14:00:00.002-03:00

Not what you want to hear but its true... no other options are available! Sounds like something you hear when your sign up for cable tv or when you shop for a sale at Walmart. But not today... that's what I heard from the Dr today. We had a good talk today. I had to get my paper work for my insurance coverage filled in and pretty much all Dr's I've seen are in agreement. The only option is surgery. But like she said today.... its getting through the medical system here to have the consultation with the Urologist that takes the time.

And boy does it take time!

I've out done all the medication options. I could go on stronger pain pills but it would mean I'd be done all day and I've got my baby girl to take care of so being in a coma isn't an option.

So now I wait... guess that's what I do best!!!!

Wow busy days ahead

2009-09-25T07:59:00.003-03:00

Tomorrow will be a big day for us... our baby doggie is coming home. We can't wait to go pick him up... today is going to be a long day waiting for tomorrow to come. Sarah is so happy she is beyond exicted to get Mickey.... hopefully we won't all go insane as we get the cat and dog use to each other. Not to mention the possibility of walking on pee and poop!!!! LOL LOL

Why am I in tears today.....

2009-09-23T09:55:00.003-03:00

Ok what's up with this. Why today? Why is today the day I seem to have tears sitting there waiting to come out.. well, not exactly waiting they've been coming out. What's up with me?

Is it the medication.... has the hormones finally kicked in? OMG am I changing.... I'm still in pain. Oh maybe its the pain? Maybe its Sarah going to school today in tears that bothers me knowing gym class is causing her anxiety.

Why am I so tired. My god I've never been this tired before in my life. Why am I so emotional that everything everyone sayes bothers me. Why why why?????

I could have seriously given Scott a divorce tonight. After spending most of the day resting cause I knew I had to go out and get the stuff for the dog and it would bring on pain and bleeding and then knowing I'd have to come home and get supper for the kids, Sarah's homework and of course there is a kitchen full of dishes. It actually hurts to stand and do the dishes so I avoid them but today I couldn't there were too many of them. So Sarah sayes she'll have dad help with homework but of course when it comes down to it nope Momma gets picked and my mouth being "my mouth" I say "ok so not only do i have to help with homework I also have to clean the kitchen and do the dishes" but Scott doesn't come back with "oh honey let me do them tonight you rest" he comes back with "well what have you been doing all day"... someone said recently we have to give males some more slack cause they don't have much to work with. Yeah well I didn't remember that line when I laid into Scott about why saying that just isn't fair to me and how for some reason helping your daughter with her homework or doing housework doesn't qualify as "babysitting" or "helping me". Your kids are not a paid responsibility or I'd be rich now and its not my job to clean the house you and your kids also help mess up.

Ok so to sum it up... I'm fed up, emotional, overwhelmed, pissed off and in pain. Gee wonder why I speak my mind sometimes.

Are you making the right choice?

2009-09-22T06:29:00.002-03:00

Oh my... we are getting a puppy. A black lap terrier mix. He's 8 weeks old.

Have we lost our ever loving mind? Guess time will tell. I'm hoping the new addition will do our family good.... the kids love animals but I'm not a huge dog lover but maybe with my own I will be. I'm honestly look forward to having a new addition to the family. I keep wanting to call him "someone" so that's how I'm going to refer to him as someone... someone to pay attention to, someone who needs to have love and affection... there sure is enough of that to go around. Someone we can take care of. Someone for the kids to play with. Someone for Sarah to look forward to coming home to see. Someone Cody can take to the playground to play basketball with and be his best friend.

I just hope we make it through the puppy year and that we make it through the pee and poop... oh that the cat doesn't decide to totally flip a cork on the poor dog.

Its going to be an interesting time that's for sure.

Too much stress to handle.........

2009-09-21T16:48:00.002-03:00

Some days are just harder to handle then others....

Ok so today we took Miss Sarah back to the Urologist to see why she developed another infection and appears to be getting some smaller ones too... sure enough... the problem that started us on this road 4 years ago is back.. OMG what are we doing wrong. The dr tells us nothing... back on hormone creams to repair the problem but my god when is this ever going to end.

So then I feel bad for her and I tell her she can take her drink into her room but to be careful. She spills it all over the floor, carpet that is. I holler our of frustration... Scott hollers at me... its a pet peeve he has about people being hollered at when they drop things. Oh whatever Scott get over it...

So then we have a bag of apples in the kitchen that was causing fruit flies so I ask him to take the bag outside and get rid of them but what we didn't know is the bottom of the bag was wet. So he carries it across the floor.... drips it all over the floor on the way, hollers about whatever caused the wet floor. Then attempts to dry mop it up... oh get over Scott you can't dry mop it. But put the apples in a garbage bag before you take them out... oh no don't listen to me... carry them out and leave a trail of apple juice all over the rest of the house.... I'll get the mop and clean it up only to try to ring the mop out and of course what did I do... knock over a glass of pop all over the kitchen floor.... yes I hollered at myself!

Guess what goes around comes around!

Well its be an interesting few days

2009-09-20T09:46:00.002-03:00

Well Thursday brought on good news at the IWK... but Friday brought on "oh my" kind of a day. Day 35 I just couldn't take the pain any more. The Dr's are more worried about my blood levels going so low but I'm more worried about the pain... its none stop and its driving me nuts. The Dr explained its like being in labour for 35 days of course its driving me nuts.
So Plan B.... change my pain medication and take me off work till I have my surgery. "Oh My"... that means I have to give up control of everything I care about at the office.... oh my how can I not be there to oversee it all... to make sure no one has to think twice about what to do.... but my health is more important then work...I need to get myself strong again.. I need to be able to take the pain medication and go to bed if I have to. I need to put my feet up and let the bleeding stop. I need to get my inability to control the pain under control! For the sake of me and the kids and for Scott... what good am I when I can't move 90% of the day without feeling like my insides are going to rip out of my body. Being at home will allow me to stop.... sit... lay down... sleep... rest rest rest before my blood drops any lower and I end up with a stay at the hospital and no surgery but a bag of blood attached to me!
Ok fine then I"ll stay home... it'll drive me nuts but I'll get over it.
So then yesterday Sarah and I and my sister Tammy went to a Hearing Impaired support meeting. I met this wonderful person on the soccer field this summer who told me about the group. I've gone to other meetings but I felt this one would be different. This one is a group of hearing impaired and deaf adults... wow! I get to ask questions. I get to see what its like to grow up in this world of ours with a hearing loss. I get to tell Miss Sarah's story and get the honest truth from people... instead of the bullshit run around you get from some of the people who work in the hearing loss industry... the information out there sucks for parents who are not hearing impaired so lets go to the people who live it daily... it was so worth every minute of the meeting... I enjoyed every moment and have a new believe that we are doing right by Sarah... we are doing good. I can't wait till next month when we meet again.

Oh it was so nice to get good news.....

2009-09-17T14:48:00.002-03:00

Oh we went to the IWK for Sarah's 3 month check up with the dr for her stomach and we finally got to go to an apt that everyone smiled.... no tears today. Her height is up, her weight is up... might only be cm's and oz's but let me tell ya when you kid stops growing for a period of time you are so thankful for just the cm's and oz's.....
They are so happy with her... no problems at all.... she's almost there! One more visit in a year and she'll be discharged from that dept!!! Yeah... it was amazing to walk into an apt at the hospital and say "we are so happy with how her stomach is doing now".... sure she'll never be able to throw up or burp but we got it under control... we know when not to panic... when to medicate her and when to just wait for the gas to pass!!! LOL

Oh its so nice to have a good day!

Hopefully the apt with Urology next week and hopefully the surgery on her eye at the end of the month will turn out as well.

Fingers and toes are crossed!

Am I the only one....

2009-09-16T21:14:00.002-03:00

A year ago Sarah wen to school with her feeding tube, came home and said "momma do the kids think I'm the only kid with hearing aids and a feeding tube?" It showed me how alone she feels. Well know a year later and its my turn... am I the only one in the world who's been on her period and in so much pain for 32 days straight now who has to work full time, deal with two kids and a husband?
Oh boy am I feeling alone... the pain just isn't letting up and nothing they are doing is working. I talked to the Dr again today. He told me to hold on tight.... oh my god just come out and tell me your wrong your injections didn't work, your 7 pills a day isn't working and your pain pills suck... just admit it.. it would make me feel better if they would just come out and say "we have no way to fix you right now and our medical system sucks so cause your not on life support we have to wait to get you in for your surgery" I think I would respect that answer a hell of a lot more then "hold on tight".... and what NO ONE understands is if I'm not 100% on top of my game Sarah suffers for it. I came home early today, I just couldn't sit there is a cranky mood and in pain one minute longer... I had to lay down. So I come home, make a cup of tea and laid down on the couch for a nap... but it wasn't before I bagged Sarah to let me lay down, to behave herself while I'm laying down, to please stop waking me up, please stop asking me to get up and help you with one thing or another.... please Sarah just let me lay down and sleep. 2 hours later I woke up, her dad was home by then and so was everyone else while I was asleep so its not like she's alone but she won't let me be alone... she won't let other people help her when I'm within distance of her. So I wake up and then it starts.... the pain comes back within no time of waking up and all I want to do is lay down and cry but I can't... Momma come here, Momma get me this... Momma help me... Momma Momma Momma....

I can't be the only one in pain like this who has a disabled child who you just want to say "please listen to me... please let your father get you that drink... please let your father help you brush your teeth... please stop jumping on the bed while I"m laying down"

I can't be!

Oh my its not how I wanted this year to go

2009-09-15T05:50:00.002-03:00

I had hoped and prayed this school year would bring on less stress and anxiety for her but so far that hasn't happened.

Last week I posted about her high anxiety day. The following day she was like a different kid. Got up that morning no problem and off the school. Came home in a wonderful mood and life was great.

The weekend came and went with no problems. But back to school on Monday brought more fear in the morning. Fear of not feeling well while gym was going on. I had a choice... fight the anxiety that was building or allow her to skip gym. I choose to allow her to skip gym.. was I right.. part of being is a parent is never knowing if your right or wrong but my thought was at least get her to school.

So the school day goes on and she arrives back home.... oh no! she's not feeling well. It looks like she may have another small bladder infection and to top it all of she must have gotten a little bus sick on the way home.... she had a headache and needed to gag and gag and gag to pass the upset feeling in her stomach.

Night time brought on tired and sleep... but what will the morning bring?

She was pretty upset too to find out her first planned field trip was booked for this coming Monday which is so unfair cause this Monday is her visit with Urology. Her health has to come first so I'm going to try and move the apt to a time after school but if I can't then I have to break her heart again and tell her she has to go to the apt and can't make her field trip.

She was so upset when I told her last night that she may not be able to go. Its not right. Why can't she have fun in her life..... why do things keep happening to her!

It sucks there's no doubt about it.

What will today bring for our baby

2009-09-11T05:37:00.002-03:00

Its taken me almost a full day before I can even talk about what happened yesterday without breaking into tears. It just breaks my heart to see her like this.

Yesterday morning Sarah got up for school like she does every morning. I didn't see anything different till we went to drop her off. When I got out of the car with her she wouldn't say goodbye to her dad or brother. That I thought was strange. But she continued on her walk to the front of the school. As soon as we hit the front doors she pulled away from me and said "Momma I can't do this" as I looked back at her she had the most honest look of fear in her face and tears that would melt your heart. After a few minutes I finally talked her through the front doors but she was not having anything to do with going through the 2nd set of doors. She kept repeating the same words "Momma I can't do this I want to go home" as she twisted her hair.

If was a full blown anxiety attack. The Learning Center teacher came out to help but still couldn't talk Sarah into walking into school. So I picked her up and walked her down to the room. But when I went to put her down she said "Momma I just can't do this, I need you, I need you" Its the hardest thing in the world to know your child has this fear and the best thing for her is to leave her there. My god what kind of person am I... my brain knows I did the right thing by allowing help in pealing her arms off of me and when I gave her a kiss and walked away my heart just broke. How can I leave my child in this state of fear... what was I doing to her.

Off I went to my Dr's apt. The minute I got home I sent an Email to the learning center... how is she? She was good by then... the was outside smiling.

My plan wasn't to discuss it with her when she got home. I didn't' want her to have to go through that emotion again but she brought it up by telling me she was sorry for the morning. Oh honey thank you but you don't have to be sorry. Your not mad at me momma. Never baby, I will never be made at you when you are that scared. Her tears again were heart breaking tears. Lots of hugs and kisses and lots of we are so proud of you for making it through your day.

But what I come to find out is she wouldn't have anything to do with her friends... she said two came over to talk to her when she was crying in her class again and she told them "she couldn't talk to them about it" and they walked away from her. She spent lunch in the learning centre playing with dolls by herself. yesterday was anti bullying day and the entire school went for a walk around the community. She stayed behind. I asked her how that made her feel and she said she was ok with it.

She was sad all day!

Oh to see that.... to see her sad... not being happy just breaks my heart.

And some of the hardest part to deal with is we don't know why. As parents you need information so you can fix the problem. So you can protect your child from her fears. But with anxiety there is no obvious reason for the fear.... its just there!

I still have hope... why wouldn't I

2009-09-10T17:43:00.002-03:00

I still have hope... why wouldn't I.

Its been 123 days since I first got sick with this problem I have. 3 Biopsy's... many other tests... a trip to the Emergency Dept... 4 different Dr's seen... 1 more to go and I take 7 pills at night before I go to bed... some to fight this some to fight the side affects of fighting this.

But the pain in the past 27 days has been unbearable... I've only been able to go to work 3 of those days and only made it 1 full day of those 3... I'm loosing 20% of my pay now and worse of all I'm cranky, bitchy to say the least. I have contractions all the time and unbearable pains as the clots try to pass my cervix. My kids pretty much want nothing to do with me. I holler and am saucy to everyone I meet or know.

How many more days can I take this????

So yesterday after knees to my chest pain I went back to see the Gyno again... he agreed I needed to take the risk and take two injections of a drug that I take now but at 300 times the dose... the bleeding has to stop, I'm anemic now... the pain has to stop... or I"ll loose my mind and no pain killer will take the pain... think of being in labour... never will an Advil work to take away that pain!!!!

I leave this office, can barely stand up... go get my medication filled and go back this morning. At 9am this morning I had the injection.... its suppose to stop it all... stop the pain, stop the bleeding and not just short term... this should last for as long as it takes the Urologist to get me into the OR.

A few cramps this morning as every morning but I made it past 10am, 11am, 12pm, 1pm... omg its working... I'm still bleeding but no pain.

I remained pain free for 8 hours... I say remained cause around 5pm today the pain started coming back... oh its nothing compared to the past few days let me tell you but its back... I'm disappointed.. I had hoped it was done but he tells me by the first of the week I should be all done... no pain, no bleeding. Of course he went over the list of "to watch out fors" and told me to call him if the pain or bleeding doesn't let up or comes back. So I still have hope..... its only day 1... I sure enjoyed the 8 hours of pain free... oh it was so nice to be normal again... I laughed! I got to have Sarah read me a book and I actually was able to listen to her without stopping her so I could buckle over in pain... for 8 hours today I felt real again.

So for now I'll hold onto the "real" feeling and keep hope and faith alive that it'll still work... I don't believe it failed... I believe my body just gave me a chance to see what being pain free is like again!

Fingers are crossed!

Always makes me look back....

2009-09-08T21:52:00.002-03:00

Every time the phone rings or a letter from the IWK comes in the mail it always makes me look back. Each time she has surgery we always say its the last time but it never is. I mean we knew this apt was coming, we got the call last week. But when the letter addressed to Mr & Mrs Conway from the IWK arrives with information about day surgery and the possibility of an overnight stay is included in the package you have to pray this is the last time... well that's what I did after the 1st, 2nd, 3rd, 4th, 5th, 6th, 7th, 8th and 9th... so why not the 10th?
I just wish a few questions could be answered... why her? Why was she put on this earth with so many problems... hearing, heart, stomach, kidney, eyes... as I pause to think did I miss something on this list! Yes I did... mental health issues.. god why do I hate typing that work so much... guess I'm still not settled.. we knew the answer when we started the process of having her diagnosed.. as parents we knew but I still don't thinks mental health issues are excepted easily as physical health issues... its like if I say it out loud the parents of her friends won't let her play with them anymore... I think we as the human race has a lot of work to do with regards to people with mental health issues... oh well, I'm getting kind of off topic again.
I guess I just wish some day we could make it without surgery.... I'm not sure how much time will have to pass before I feel like "oh my goodness its been X number of years since she's had an operation" but for now... 10 in 7 years.. ok enough is enough!

Oh what do you say....

2009-09-08T19:23:00.001-03:00

So I went back to work today... only the 3rd time in three weeks. The pain at home and at work is just about as bad. The pain never lets up... it hurts all the time.
Tonight I"m laying in bed trying to get rid of the pain when Sarah comes in. What's wrong momma? Oh nothing baby I'm just laying here trying to get rid of the pain and thinking. Oh it doesn't matter Momma, the money doesn't matter, you matter... then I got a big hug and a kiss...
What can I say.... she's got the biggest heart of gold.
Thank you darling for taking such good care of your momma... I love you forever and always.

All emotional today

2009-09-05T08:52:00.003-03:00

Maybe its what I've been going through or maybe its seeing my baby come home on the school bus so sick. The heat on that bus got to her? Or is it her nerves all day at school? The Dr explained it one time with kids who have such high anxiety... its like an abusive adult... all day at work they act "normal" and then when they come home they beat their spouses and children... well she's not like that by any stretch but she sure holds it in all day at school and releases when she gets home. All summer we had such good days, sure there were bad days but so many good days. Now school is back and on day 2 she was upset and overtired and then on day 3 she was sick. It took over an hour of her trying to throw up (which she can't do anymore cause of her surgery) and it took the good right out of her... she finally feel asleep and stayed there for 4 hours. My god... is this how the school days are going to be again this year... we went through this so many times last year!!!
So last night she's feeling great... singing and laughing and playing her Hannah Montana songs.
Anyone who reads this please go to youtube and look for Miley Cirus's "The Climb"... listen to the words... that's my baby... that's what she does everyday.
Please parents teach our children its not what's on the other side of the mountain that matters its how you make the climb that counts!!!!