Wednesday, September 15, 2010

Go Charlie Go!

(Charlie, 13 months)

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, "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:


  1. sweet about her waving :)
    congrats on the fundraising and the new bike

  2. Hi Cherie, since you are so open and honest with your writing, I will do the same. I couldn't stay to the end of the race because I couldn't hold it together... I am misty right now writing this and I am at work.. not good. I cried many times at the park that day. I cried because I am proud, because I hurt for the parents that were there racing for their kids, and well, because of those bloody onions they were chopping for the burgers. Congrats on an amazing accomplishment. I think if I race next year I can avoid the tears... I hope.

  3. Your writing always makes me cry, but Cherie, you are such an amazing mom. I love to read your blog, see pictures of sweet Charlie, and was so happy to hear she is waving!!! There is always hope, I think, no matter what the diagnosis is, everyone is unique, and your love for her will do alot, healing her, and just making her a happy, much loved little girl. It sounds like she "beats the odds" of whats expected, sounds like you are also doing more than you ever expected of yourself. You have every reason to be very proud. I am proud of you, of your strength, determination, and love.

    Janelle xo

  4. Hi I am new to your blog. A friend of mine past it on to me. She had met you at a spin class that was raising money for your cause. Your family's journey leaves me speechless. to be going through what you are and making the most of everything is so amazing and a message that needs to be saturated into our culture.
    I am so glad that Charlie has come into your life to teach you how to cry and not make excuses, to hug more often and to open your heart...what a blessing.
    I just wanted to send you love and light today...and the message that no matter what the future holds that all of this is with purpose and your story gives hope.
    Thank you for being so brave

    love and light

  5. Lol-as if she could get any cuter! That just puts the biggest smile on my face :) thanks for sharing Cher! Xoxo