As i've mentioned before, I have an issue with tears. Whenever I get emotional or upset and cry, I always make an excuse for them. I'm totally the kind of person who blames things like onions for springing the leak...which, is always, in retrospect, even more embarrassing then just saying, "Hey, I'm sad, I'm crying." case closed. But, NOOOOO , I have to come up with excuses like: "Oh, can we hurry up here (while crying) I have PMS" (this was said on my wedding day) or, "I'm just really tired and I haven't eaten much today." (which I said this past weekend after I finished the Adventure Challenge, and my friend Sarah whispered in my ear that she was very proud of me, while hugging me, which pushed me right over the edge and broke the seal.) I usually try to avoid things where I know feelings will have to be shared. I have friends that live in other provinces and countries, and when they've been in town and they are on their way back home soon, I intentionally avoid the last get together or phone call, so I can avoid the hugs and mushiness. Sad but true. I've realized that the more I make excuses for my tears, the less I release, and then the more I "leak" at the strangest times...like, "why the hell is she crying, she just bought a slurpee and a People magazine?" kind of times. Luckily, Charlie coming along has changed things, but I still have a long way to go. I'm currently challenging myself to give more hugs (which although still scarce, have doubled since her birth) and to cry when I want to without making excuses for it.
The Adventure Challenge was amazing! I ended up raising more than $10,000 and my team almost $14,000. We were in first place for sponsorship as a team and as an individual. It was much harder than I thought it would be, but so worth it. What a rush it is to push yourself past your comfort zone and complete something you've been planning to do for months. AND, I won a beautiful bike that I'll be using to train for next year with!
But, with the end of the Adventure Challenge, comes the beginning of too much time to think on my hands. It isn't just for Charlie and 'the cause' that I've been busy writing to the papers and competing in the Adventure Challenge for...I HAVE to do these things or I'll just drown in my thoughts. Helping her helps me. I totally get why people who experience tragedies often change their lives for the better because of it...if they don't, then what? To me, when you've gone all the way down, down, down, there's only one way left to go. And, I don't even know if it's a completely healthy way to be or think, because I imagine that sitting with yourself, and really working through your thoughts and feelings is probably healthier, but hey, this works for now, and when it doesn't, I'll check out my other options.
We took Charlie to the doctor on Monday and today. They wanted to do a swallow test on her. At first we thought it was to see how her disease has progressed, but then we were told it was so that we could, if things looked good, start giving her tastes of food. In order to perform the test they need to put fluid in her mouth, which is risky in itself. So, Matt and I discussed it and we decided against it. It's been four months now since Charlie has eaten orally, besides the odd smear of birthday cake icing, so why would we start now, knowing that SMA is a progressive disease, meaning things will only get worse from here. Charlie seems happy with her tube feeds and we don't want to introduce tasty foods, just to take them away from her again in the near future. Is it better to have tasted and to never taste again, or to never have tasted at all? Hmmmm.
SO...Charlie, despite the weakness in her arms, has now officially learned to wave! I don't think I've ever been more proud! It also happens to be the cutest wave I have ever seen! It's things like these that keep us feeling optimistic for the future...seeing progress in Charlie, regardless of a medical diagnosis that prepares us for the opposite, makes us beam brightly with pride and love. Go Charlie go!
Here is a the link to the Adventure Challenge video and Global news interview:
Adventure Challenge video:
Global news (click on 'sat/sun news, then on the 'grand fondo' video: