Monday, December 20, 2010

Happy 18 month birthday Charlie!

(Charlie, 17 months, showing off her pixie cut)


















It's been one year since Charlie was diagnosed with SMA type 1 and last week was the first time that I dreamed things were different. It was a wonderful dream, and it was so believable...Charlie was able to really sit up...she was sitting in a highchair, and I was busy tidying the house up when I turned around to see her smiling away and feeding herself dry frosted Cheerios. I was instantly panicked, because all I could think was, "she can't eat food, she'll choke!" But at the same time I was amazed by what I was witnessing, and could see that she COULD eat food, and she wasn't choking...in fact, she was loving her Cheerios and eating them like an old pro. My mom was somehow in my dream and when I asked her how Charlie got the Cheerios she said, in a no big deal kinda tone, that my sister had given them to her. I kept trying to express how big of a deal it actually was that Charlie was orally eating food, but my mom and my sister just acted like it'd been this way all along and that it was no biggie. When I woke up and realized that it was just a dream, I was instantly depressed...I couldn't believe how excited and happy and amazed I had felt in my dream about such simple things like sitting up and snacking. BUT, when I thought more about the dream and it's 'message' I realized that nothing is 100%...I mean, she's moving her legs now, that wasn't supposed to happen...so hey, anything is possible, right? I spend way too much time focusing on what Charlie won't do/can't do...I could be spending that time more productively by keeping my door open to the 'what ifs'...there's nothing wrong with dreaming.

We've been out of the hospital a few weeks, and Matt's sick again. He's been locked in his room for 48 hrs to avoid spreading the sickness to me or Charlie. I slip a multi vitamin, echinacea, a shot of Buckleys, vitamin c, and soup in every couple of hours. I've been bathing Charlie everyday, double nebulizing her (a new machine that basically humidifies steroids into her lungs to help keep them strong) bipaping her almost full-time, and cleaning out her nose with a saline solution every couple of hours. So, now, we just wait. If she sneezes, I cringe...and I hate to say it, but I get resentful towards Matt. Obviously he can't help being sick, but I just see Charlie's life flash before my eyes whenever someone sharing the room with her coughs or sneezes. I DO NOT want to spent Christmas in the hospital, and obviously Matt feels the same...so hopefully all of the precautionary measures do their intended job. I'm pretty much holding my breath and crossing my fingers for the next 5 months, and trying to cut a deal with summer to come early.

Our stroller finally showed up a couple of weeks ago. When the rep came over to teach me how to use it, I'm afraid I was a bit of a brat with her. I became anxious when I saw the stroller and reacted negatively towards Jody the rep, trying to point out all of the 'flaws' instead of just admitting that I was overwhelmed. It's just that when I saw it, and all of the attachments, like the IV pole, my heart sunk and I realized that from now on, whenever we go for a walk, people will know right away that something is 'wrong' with my baby. And yes, I talk about it openly, but sometimes as my friend Meaghan helped me articulate, I just want to blend in too. And, as suspected, people are starting to do double takes...and it makes me feel uncomfortable...and then ashamed with myself because I wonder if it's because I'm embarrassed of Charlie...but, I know it's not that, it's more that I just want people to see Charlie BEFORE her illness instead of after her illness or not at all. It's gonna take some getting used to, that's for sure.

Charlie turns 18 months on Wednesday! A year and a half! This is HUGE! A couple of friends are coming over on Thursday and we're celebrating with wine and cake and pressies for Charlie...and then it's her second Christmas on Saturday! Both amazing milestones that we were told we'd never see. LIVING proof that you shouldn't believe everything you're told.
Happy 1 1/2 Charlie, and Merry Christmas!!!


9 comments:

  1. love all the milestones and your honesty as usual :) merry christmas!

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  2. Merry Christmas and Happy 1 and a 1/2 Charlie!

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  3. To a Christmas without cold bugs & hospital stays...you deserve to be at home with love, peace & joy and maybe another little miracle milestone; this is my dream for you.

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  4. Oh Cherie - I wish I could hug you and tell you how much I care about you. Would you hug yourself from me? One day I just HAVE to make a trip from Langley and find you and hold your hand. YOU can do it! Keep on.

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  5. What a happy milestone! Wishing you all a hospital free Christmas! Best wishes in the year to come.

    Linda

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  6. Happy New Year Beautiful Girl!!!!
    xo Jo

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  7. Miss you, even though I don't know you. Creepy? Maybe...hope you're ok :)

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  8. Hope everything is okay with you guys... it has been a long while since you've posted.

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