"Hope is a good thing, maybe the best of things, and no good thing ever dies" ~ The Shawshank Redemption
The new year has brought us amazing things so far. Kate's development is progressing at what seems like an accelerated rate (well, to us it's accelerated). Even when she was super sick with a fever of 41(yikes!) before March Break, she didn't let it slow her down. She's now picking up food with her hands, feeding herself, and holding things better than she ever has. She is climbing stairs on her hands and knees and crawling on all fours like there's no tomorrow. We are so confident that everything is in place for her - we just have to wait. Sheesh...that's really hard for me!
Today was a big day for the Angelman community. A clinical trial that will be funded by FAST has been announced and the 24 participants were notified today. Kate is too young to participate. The clinical trial involves an FDA approved medication that has relieved some of the AS symptoms in the AS mouse model. I've been hesitate to let myself get excited or hopeful. I want to be excited, nervous, anxious, and hopeful like the rest of the AS community, but I'm so, so scared. It's been 2 years since I realized something was "wrong" with my baby girl. This may seem silly, but I feel sick watching commercials of the "Believe" slogan from the Vancouver 2010 Olympics as it makes another appearance for the London 2012 games because it reminds me of the WORST time in my life (February and March seem to be hard obstacles to pass for me). And then there's our Kate, who shows me every day (without a drug or treatment) that life is not what I thought it would be at this point...it's actually WAY better. So I feel a whole crazy range of emotions right now and I cry at the smallest thing. I'm a bit of a mess. I think it's hard to be so newly diagnosed and hear this kind of "hopeful" news because I didn't think there was any hope at all back in 2010. I haven't spent much time following the research on AS. I've been so focused on Kate's development and getting her included b/c I've always felt that's the best way I can help her and give her the best life possible. In the early days of Kate's diagnosis, I remember snapping at my mom when she asked me sciencey questions, trying to understand gene therapy or possible treatments. I told her it would take YEARS for anything to happen and by that time, it would likely be too late for Kate. Mom actually asked me if there was a way to turn on the paternal UBE3A and I snapped back at her, telling her she was crazy and had blind faith and hope. Low and behold, 16 months after I said that to my mother, Dr. Philpot published in Nature (best academic journal ever...I could never get my stuff published in Nature) that he has activated paternal UBE3A in a mouse model of AS. I don't think I've ever been so wrong about something in my life...
So here we are...I'm afraid to be hopeful, but I know that I want Kate to reach her utmost and fullest potential and I will do whatever I can to make that happen.
I want to share one of my favourite blogs with you. It was sent to me back in the fateful summer of 2010 by a grade-school friend of mine. The blogger, Kelle Hampton, is also an amazing photographer, mother, and soon to be famous author when her memoir is published this April. She had some amazing things to say about March 21 (3-21: a Day to honour Down Syndrome). Kelle has inspired me to take my camera with me more often and take more pictures. I don't want to miss any beautiful moments. Permit yourself to read this post and look back at some of her other stuff. Her birth story for her daughter, Nella, will break your heart and then sew it back together even bigger than it was before! On Monday, Jeremy and the kids were at the park behind our house with Jenny and Aiden. As I crossed the field to see them, Jeremy had Kate on his shoulders and they were running toward me. I could see Jamie in the background playing with Aiden. Kate was laughing, making sounds of pure rapture and joy. I've never heard a more amazing sound. It made my heart soar. I'm sad I don't have a picture of this scene. It looked like heaven. I thought to myself: it's a beautiful day to be alive. Indeed, that is truly all that matters. This idea is so well reflected in Kelle's post. Read it. You'll feel so good afterwards. http://www.kellehampton.com/2012/03/3-21-2012.html
7/9/2012 05:59:27 am
Great blog post.
Leave a Reply.
Kelly is Kate's devoted, caring, Type-A mom. Kelly is a high school physics teacher who earned her masters degree in neuroscience from McMaster University in 2003.