To say June will be a tough month is an understatement. It was June 1st 2010 when Cooper started collapsing on a regular basis and had to go to OVC to find out he had dilated cardiomyopathy in addition to his cancer. He passed away on June 16th. A week later, Kate had her appointment with a pediatric neurologist and was tested for Angelman Syndrome. Our world was officially rocked. Life as we knew it changed forever.
But I think we've all come a long way since then, especially Kate. Her development was basically stagnant until the end of February, when she started army crawling. We are now getting to see our child hit physical developmental milestones. And for those who've ever thought their children grow up too fast, watching Kate grow is way more enjoyable than I ever thought it would be. Kate's slow but progressive development has made us appreciate what a little miracle she is! And of course, we draw strength from our family and friends who've been behind us since the beginning, and a community that continually lets us know we're not alone. I know Jeremy and I both feel empowered after last weekend's Kaps for Kate concert. It's truly an amazing feeling.
Yesterday, we took the kids to Bolender park here in Elmira. There’s a toddler/preschool section and a school-aged section. Kate went on the swings and then we sat her in the grass to crawl around b/c even at 5:00, it was scorching! After a bit of watching her in the grass with her Dad, I remembered what another parent told me about inclusion when I went to the Integration Action for Inclusion anniversary in April: even if Kate can only do 20% of an activity, I should help her to do it. So Jeremy brought her over to the toddler section where Jamie was playing. The structure forms a perfect square with a tunnel on one side and 3 bridges on the other. I helped Kate to walk to the tunnel. She put her hand on the railing and took a few steps with me holding her under her arms. After a few steps, she would lift her feet off the ground and I’d remind her that her feet stay down. We walked to the tunnel, where she crawled through to meet Jamie on the other side. Of course, I couldn’t fit through the tunnel so I had to go the long way around!! I got her to her feet and she walked all the way back to the start of the tunnel, lifting her feet with big, purposeful steps. We did this cycle at least 5x, with Kate keeping her feet on the ground more and more each time. Jamie would meet her halfway, cheering her on and giving her a hug when she reached him. It was the cutest, most amazing thing. Honestly, when this child walks by herself, it will be earth-shattering!! So, even though I know there’s a lot Kate can do, I won’t just assume she’s happy to sing and then be done at the park. She’s going to walk these structures!! She’s so much more motivated – we can see that it’s coming…it’s still probably far away, but it’s coming!
Keep voting for Kate’s Kause in the Keg's Thanks a Million contest – we’re going to build a spectacular park where no child will ever doubt their abilities or wonder if they belong.
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.