We have had such an exciting weekend. I had a great night scrapbooking with some super wonderful friends on Friday and got to go to Collingwood with one of my best friends for her birthday. But exciting is probably not the right term for this weekend: earth-shattering is more like it! But before I get into it, I think I need to set the stage a bit.
We've had a rough year. It was around a year ago right now that it really set in for me that Kate was special, all the while my dog Cooper was undergoing chemo treatments for his hemangiosarcoma. As I researched and considered the myriad of disorders Kate could have, I felt like I was living in hell. It is a most terrible thing to worry about your child like this, wondering if they'll ever be some version of what we call "normal". Right now, we are about to face a whole series of first anniversaries (they are always the toughest) over the next few months as we approach the summer and the one year anniversary of Kate's diagnosis. It's hard. Sometimes people forget how hard it must be for us because, let's face it, right now Kate makes disability look good. And we make being the parents of a profoundly disabled child look not so bad. We function well and can put on a good smile for those around us, but rarely let anyone see how rough it is on a day-to-day basis. We still grieve the loss of what might have been. We know this will get easier with time, but some days are worse than others. Time is the best medicine...time, and of course lots and lots of love.
So this is why our little Katie Kate's newest accomplishment is more than just a milestone: it's earth-shattering! For those of you who missed it, please visit: http://www.youtube.com/watch?v=gC9odAQG-_Y. As Jeremy said to me tonight, it's actually life-changing. We feel like different people...like a different family...a more "normal" family with a baby who can crawl, except our crawler isn't a baby, she's a toddler who doesn't toddle. Can you imagine watching your child learn to crawl and describe it as earth-shattering or life-changing?!? Seems a bit crazy, but we've been waiting so long and Kate has worked so, so hard. It's so cool for her to crawl because it will help her to develop the right muscles required for walking. I know that full four-point crawling could still be months away, but I am delighted to say that we can't just leave Kate on her mat on her tummy anymore! She just might not stay there!
A good Angel mom friend once told me that I will grow to realize that Kate is a little trailblazer, here to change the world. That's starting to sink in. This is a little girl who doesn't know the word CAN'T and who will never, ever give up. She's the strongest person I know and is such a little fighter. It's ironic and bittersweet that my Mom embroidered TOUGH COOKIE on Kate's baby quilt to describe her when she was only 2 months old, but that's really who Kate is. She embodies everything that is pure, good, hopeful, and lovely in this world. And she's all ours!
Jamie is without a doubt the greatest big brother. On Friday night, he had the most amazing swimming lesson. His instructor is so great with him. He's got him swimming almost a full width of the pool. I had to stand up to get a better view of Jamie because I just couldn't believe it was my kid swimming like that! He too has so much to give to this world and Kate is helping to grow into the most sensitive and caring little guy. He is Kate's biggest cheerleader and protector. Just as my heart swelled with pride when Kate started army crawling, it grows even bigger when her brother shows just how much he loves her. What a stellar weekend for both kiddos!
I am nervous for tomorrow to come - perhaps that's why I don't want to go to bed yet - because we are seeing a developmental pediatrician at McMaster. I am wary of anyone who tries to pin point Kate's developmental age. It's not helpful - only hurtful. I don't want this appointment to bring me down from this amazing turning point we've had so I will be sure to dictate the tone of the appointment by starting off with our vision for Kate: we want her to live a complete and full-filling life, integrated into her community, doing things she likes best, and most importantly, surrounded by those she loves most. This vision is no different from any other parent.
OK I am off to bed. I will sleep well knowing my Kate is the most amazing girl I've ever seen, my son is unbelievably caring and loving, and Colin Firth won the Academy Award he so deserves. Sigh...all is right in this world. :-)
Kelly is Kate's devoted, caring, Type-A crazy mom. Kelly is a high school physics teacher who earned her masters degree in neuroscience from McMaster University in 2003.