Oh wow, it’s been a long time since I posted last! How embarrassing! At least I have a decent excuse: we are now into week four with Kate’s companion dog, Reebok. He’s a 19 month old golden retriever with an amazing personality. He’s so kind, caring and gentle. And it’s so cool that he’s already trained! Reebs has brought so much love and warmth into our house – and he’s also filled an absence I haven’t had the courage to acknowledge until he arrived. Life feels a bit more complete now.
Kate’s Kause has had an amazing month. I just can’t believe how well we’re doing. Our current balance is approximately $56 000 – this is just amazing for 6 months of fundraising! We received $2000 from the New Apostolic Church in Elmira and over $1200 from the BCI Entrepreneurship class. We are pretty pumped for McHappy Day on Wed May 11th. There are several McDonald’s stores that are supporting Kate’s Kause with a portion of their McHappy Day funds: Elmira, St. Jacobs, Listowel, Fergus, Kitchener stores (Ottawa and River Rd, Victoria St., King and Wellington, Walmart Ira Needles, Market Square), and Welland stores. Jeremy and I will be volunteering at the Elmira McDonalds from 4:30 – 5:30 and Kate will also make an appearance – make sure you stop by! We also have a golf tournament coming up on July 11th at Elmira Golf Club. Check out our website for details!
I am finding the spring a bit tough right now because last year at this time I was going crazy trying to figure out what was going on with Kate. I can actually remember that the diagnosis I had for her this week one year ago was Sensory Processing Disorder! Each week, I bounced from one diagnosis to the next in desperate attempt to convince myself it would actually be nothing. For this reason, and many others, I am grateful for the experience I had on the weekend. A good friend and fellow Angel mom invited me to the Integration Action Group’s 25th anniversary event in Toronto (http://www.integration-inclusion.com/). It was held at a beautiful old church, right beside the Eaton Centre in Trinity Square. This is an amazing group. I got to meet the pioneer parents who fought the courts and school boards to get their disabled children into schools. I can’t believe school doors were closed to disabled children only 25 years ago – the idea seems ludicrous to me! I met wonderful, inspiring special families who all live lives with no limits placed on their kids. It really reaffirms my thoughts and vision for our Kate: I want her to be happy, live in a comfortable place of her choosing, surrounded by the people she loves, working in a position she loves. These people reminded me that all of that is truly possible. It’s amazing that you feel such an instant bond with strangers when dealing with disability. These parents all went through the same thing we did: they had to face the realization that there was something different about their beautiful babies. I think that was the hardest thing I've ever had to do in my life. I listened and learned from these parents, and cried at their amazing stories. What an amazing night with great people. We, and of course Kate, are forever grateful for the efforts and anguish they went through to get our kids included.
I went to McMaster today to meet with the genetics counsellor and geneticist. I had received a call from them back in April, stating that CHEO (Children’s Hospital of Eastern Ontario in Ottawa) wouldn’t proceed with testing my blood to see if I was a carrier of AS b/c Kate’s FISH test confirmed I wouldn’t be. This isn’t entirely true, so I was anxious to learn why they thought discarding my test was OK. I had a great appointment and had no trouble gaining the support of the genetics counsellor and geneticist. Not only did they agree to test my blood to make sure I am not a carrier of AS (big implications for family members and Jamie), but they also agreed to do a DNA microarray analysis on Kate to find out how big her deletion is! This is unheard of in Canada, but they are willing to do it for us! I left McMaster feeling happy that I had won a small victory and gotten more than I wanted, but also feeling a bit sad. McMaster is where Kate was tested and diagnosed…I’ll never get over that. Being there brings overwhelming sadness…I’m happier Kate goes to HSC in Toronto.
On another note, Kate is doing exceptionally well. If you haven’t seen her early transition video, scroll down and take a look. It’s awesome. Kate is doing really well with her crawling and can even drink out of a straw now! She’s a rock star! Plus, she’s incredibly beautiful, both inside and out!
Jamie has just been outstanding lately. The other night when I tucked him into bed, I did our usual ‘good night, I love you’ talk. He responded with, “I love you too. Mommy, you’re the best. You’re the best of the best.” Oh be still my heart. I gave him a big hug and took in the moment. He’s an amazing little boy. He’s super excited about our upcoming trip to Buffalo for the ASF walk. I told him he would get to stay in a hotel, go swimming, shop at the Disney store, eat at Olive Garden (or Cheesecake Factory if I have my way!), and swim some more! After I explained it all, he asked about how big the pool is and what shape it is. Then he said, “Mommy, thank you so much for telling me about this!” He’s so freakin’ cute, I can’t stand it!
I’ll keep you updated on our progress in May. Thank you for your ongoing support!
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.