Monday, April 19, 2010


(Charlie, 9 months 3 weeks)

I woke up dreading today. A month ago we scheduled a 3 day stay at Canuck Place. We had a quick tour a couple of months back, and although it's a beautiful piece of architecture and is nestled in among other breath taking mansions on a quiet tree lined street, I can't help but think about how my family has met all the requirements to be granted VIP access. I would gladly go back to being a denied no name in the eyes of Canuck Place. But, that being said, if Charlie has to be sick and we have to go somewhere, I'd choose Canuck Place. I am in a beautiful round room with stained glass windows that frame a gorgeous mountain view and is surrounded by big old trees filled with talkative birds. We've met with our nurses, counsellor, and doctor, and they all seem so kind and compassionate. Although I personally feel like we are here a little soon, I know there must be a method to their madness and trust that the timing is perfect. I am open to discovering more about Matt and Charlie and myself over this next few days, as well as being able to really focus on enjoying Charlie and letting the staff take care of us and share in taking care of Charlie's needs with us.

The other day when Matt took Charlie to see his Nana and I was left alone, I felt compelled to look up other families dealing with SMA. I found one family who's daughter passed away at 9 months...she seemed fine, her mom put her down for a nap and she died within 10 minutes. Besides getting me really upset, it got me I've been worrying about Charlie's (and our) change of lifestyle...machines, g-tubes etc. but, we should be so lucky! What if we don't even get the chance to help her with her quality of life? I started to miss Charlie...and it got me thinking too...I began to try to picture myself in the future...I tried to really focus on what it felt like to miss Charlie and told myself this is what I'll feel like after she dies, except, because in the back of my head i knew she'd be home soon with Matt, I couldn't quite touch that feeling completely, but what i could touch, brought on anxiety and a big cry. Upset and emotional, I texted my best friend Anna with my thoughts. She told me, " that's what a big broken heart feels like, absolute shit." And, "that it will come in waves." She's right, it does.

We had a great visit with Matt's dad and step mom, they are lovely people and were so easy to be with. It was awesome to see Matt with his family because in almost 5 years together, I've only seen Matt with his dad once for 20 minutes. I feel like this visit has healed a lot of old wounds and has encouraged a lot of future growth between the four of us (five of us). I can give you a million reasons why Charlie's illness is awful and will negatively affect us for the rest of our lives...but, I can also give you more than a few reasons on how it will/has positively affected us for the rest of our lives.


  1. Canuck Place is so amazing and will let you guys breathe a little better for a few days. I volunteered there for years and the staff is the best and makes you feel like you're at a playhouse and not in a medical facility.

  2. Charlie was given to you as an angel, as she is one here on earth. I have NEVER in my life ever seen a baby so beautiful and happy all the time. (Well except at your dad's birthday party a few weeks back when she was teething LOL) For such a little soul, you are going to be amazed at what she can and will do.
    Your blog is beautiful and heart wrenching at the same time and you do have a way with words.

  3. That picture is so adorable!! I swear she gets cuter everyday! And that smile! Just precious!!

    Glad you've got a bit of respite at Canuck Place, they'll take good care of you all there.

    Sorry I missed you at your Dad's birthday party, I was unable to make it. I hope one day I get to meet you, Matt and Charlie.

    Big Hugs!!


  4. I stumbled upon your blog because of a google alert for spinal muscular atrophy. My daughter, Gwendolyn, has SMA Type 1 as well. She is now 2 1/2. I just want you to know there is very active family support -- if that is something that helps you -- on a forum called It's a place for SMA parents and children to talk, ask questions, and communicate with the many other families going through this difficult journey. If you have any questions about anything, don't hesitate to ask. You can learn more about my daughter on our blog