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!!!


Tuesday, December 7, 2010

Christmas miracle.

(Charlie, 17 months)













We've been home for a couple of weeks, and now that some of the dust has settled, I'm actually beginning to get pretty excited about Christmas. We have the tree up, the stockings hung, and Matt and I have our differences aside. Christmas is about love and family, and Charlie is that to both of us, so we're focusing on her....and honestly, it's not really hard to do, she's easy to lose ourselves in.

Charlie has been astounding us as of lately...again. After two back to back colds, and many close calls, Charlie is doing things she's never done before...things we were told she'd never do. It was last year on Christmas day that Matt and I took Charlie to emergency at Children's hospital because her motor skills had gone from GREAT to GONE in about six weeks time. Charlie had never really moved her legs or bared weight on them since birth. I had googled 'my baby doesn't bare weight on her legs' many times, and was always relieved to see that this was a common worry among many mothers and that everything was going to be fine. So, I'd stuff my worries back down and convince myself I was just being a nervous first time mother. It was when we started noticing that Charlie was no longer doing the things she used to, that we really began to worry.

As I've said before, when Charlie was diagnosed we were told she most likely only had a few months to live, Charlie had gone downhill so fast that the doctors just thought that if she continued at that pace, she would be gone within months. BUT, we're happy to report that, one year later, Charlie has not only leveled out, but she has IMPROVED in many areas! She is flailing her arms, wiggling her bum, and moving her legs and feet, something she NEVER did before (unless she was in water)...I've been calling it a Christmas miracle! This all started in the summer, but keeps getting better and better. Every time Charlie gets a cold and we see how sick she can get, it sucks the hope out of us, and then we get home and she starts doing something new and improved, and it not only fills up the old hole where the hope used to be, but it creates a new one, one that makes us dream bigger and better for Charlie.

SO, on Monday I went for dinner with my 'angel' and her daughter. I met her at my gym last year and we became friends and she did the Canuck Place Adventure Challenge with me. She's a very interesting woman who's been AMAZING to me. She has supported me and Charlie in many ways, and I'm very thankful to have met her. At dinner the other night she invited me to join her and her daughter, who is my age and is also amazing, in HAWAII on Jan 1st! I came home worked it out with Matt and the nurses, and I'm going! I am REALLY looking forward to it!

This week, life is good.


A video of Charlie 'dancing'.


video