Tuesday, May 29, 2012

Everything you ARE.

(Smiling Charlie, 35 months old)

On Saturday I took Charlie to go and meet my friend Christie, her husband Ed, and their two little ones, Dani and Elise, and we all headed to the Granville Island water park. It was hot out, and a weekend, so of course it was a zoo. Screaming, bathing suit clad, croc wearing kiddies were everywhere. They have a swing there in the shape of a large disc so its one of the few things at a 'regular' park that Charlie can use. I strolled Charlie up to it to wait our turn. We waited. And waited until another mother asked if we were waiting to use it. I explained yes but that unfortunately, although all the other kids were piling on 5 at a time, Charlie would have to go solo. She gave the kids a time limit, and we were up next. As I was unhooking Charlie's feed and getting her ready to pull out of her stroller I became insecure that two little girls, about 9 or 10, were pointing and laughing at Charlie, I expressed this to Christie who had just walked up to see how things were going. She said, "Noooooo, they're not Cher". I got my back up and got in instant protection mode of my baby, and a future full of gawking and pointing flashed before my eyes. I put Charlie on the swing where she had the time of her life. The two little girls stood in the background waiting patiently to get back on when Charlie was done. When I took her off and put her back in her stroller the little girls, both still staring said, "She's sooo cute!" I thanked them, but still felt uneasy. The girls meant well, but I was just feeling extra insecure about Charlie's differences for some reason, and was worried that they were the focus of peoples attention towards her.

I turned around to see what else we could do. I'd lost Christie and her fam in the kid chaos. I found myself focusing on everything Charlie couldn't do. Can't go through a sprinkler, her machines could fizzle out if they got wet or she could get water in her mouth and choke. Can't go down the watersides, for fear of the same. I stared at a cute little (about) 2 year old girl standing by a faux fire hydrant that was shooting water out. She had her hand in the stream and was just stomping in the puddle that had developed below it. I started getting anxious and a bunch of CAN'T, CAN'T, CANT'S and NEVER, NEVER, NEVER'S went through my head. Can't go down a slide, Can't stomp in a puddle, Can't run through a sprinkler, Will never ever be able to...It just wasn't stopping. The tears came. I turned around quick, and we bolted out of there. I tried to keep my composure as we raced home. My phone rang, I knew it was Christie, I couldn't answer or I'd lose it in public. I texted her back, "Sorry, had to leave, got really emotional, Can't talk. Trying to keep it together." She texted back that she figured that was the case. 

When Charlie and I got home I just put us both to bed to nap it off. I woke up in a strange mood. Charlie's nurse came at 7, so I collected a few of my old CD's and drove out to White Rock to visit with friends. It was nice, and I think I needed the alone time on the road because when I drove home at 11pm I just kept driving...I decided a cruise through Stanley Park was in order. So, I turned my music up, and just drove. It was lovely and just what I needed. I love Charlie for everything she IS, and honestly, most of the time, I really don't see what she can't do, because it's all I really know...but sometimes, it just hits me so hard. I worry for her, and I worry for me. I don't want any of us to ever be left out. But at the same time, sometimes it's so hard to be a part of something that doesn't really 'fit' you either...when you're always the 'different' one. Sometimes I have flashbacks of the dreams I used to have for my daughter/my family and they seems so foreign to me now. Who cares now about which preschool she'll go to or if she'll be rebellious someday? I just want her to wake up tomorrow and smile. That's the current dream, It really is that simple. And it really is the ONLY thing that matters.

I love you Charlie, for everything you ARE. You're everything to me. You're perfect.

Wednesday, May 23, 2012

Happy 35 month birthday Charlie!!

(Charlie 34 months, and mama)

Well, the marathon went well...It was definitely an experience I'll never forget, that's for sure! And, Charlie's Angels ended up raising $4000 for the Gwendolyn Strong Foundation, so I'm pretty proud of both feats! I'm actually in the process of trying to figure out how to start a 'Charlie's Angels' foundation...more info coming soon!

You might recall that a couple of weeks ago Charlie received her eye gaze system. She was an old pro at it in no time at all but what is even more amazing is that she REALLY started talking around the same time! Charlie is saying a lot of "I wants"now! "I want bubbles" "I want sparkles" "I want Lilo and Stitch" "I want mama" "I want papa". How amazing is that?! It's something new everyday now, she just keeps surprising us! Matt and I are so, so proud of her and regularly discuss our growing love and admiration of the little miracle girl we made. She never stops amazing us. 

Happy 35 month birthday Charlie. We love you, love you, love you!

Thursday, May 3, 2012

Exciting times!

(Charlie and mama at Children's hospital for her bi yearly neuro review)

Last Thursday Michelle Eliot from CBC radios 'The Parenting Project' and 'On The Coast' came over to interview me about Charlie and my blog. It airs tomorrow at 5:20 pm on 88.1FM. This is the link to it as well:

Thank you so much for helping us raise SMA awareness Michelle! 

Well, we reached our fundraising goal for Charlie's Angels! So far, we've raised $3850 for The Gwendolyn Strong Foundation, http://thegsf.org/home/! And they blogged about Charlie's Angels here: http://thegsf.org/blog Thanks to all who donated, and if you'd still like to, here is the link to the Charlie's Angels Facebook page:


The Marathon is this Sunday, May 6th. I'm nervous! Wish us luck!

Charlie was lucky enough to qualify for an Eye Gaze System recently. Basically it's this really awesome computer where she uses her eyes as a mouse to communicate with us. It blows my mind what technology can do! It also blows my mind CONFIRMING how brilliant my little angel really is. I mean, we always knew it, but now we have proof! She is picking it up so fast. I'll post videos soon. Of course, the second we find out Charlie qualifies for the Eye Gaze, she starts talking more and annunciating her words better...not that I'm complaining! She also just got her standing frame. So, things are getting pretty exciting around these parts! I'm attaching a couple of videos of Charlie in action. Just when you think you can't love her anymore...

Wednesday, May 2, 2012

Hard at work.

Charlie just got a standing frame so she is now STANDING!!! I took this adorable picture of her the other day. I really need to get a life.