Happy 2nd birthday, sweet Kate!
I can definitely say that I found this birthday much more celebratory than last year. When Kate turned one, we were 2 days away from meeting our neurologist at Mac. I knew something was going on with her - I bought her toys for her 1st birthday that were suitable for a 3 month old. I still remember shopping on a Saturday afternoon in St. Jacobs at the toy store near the red caboose. Our doggie had just passed away from heart disease and cancer and there I was shopping for toys for Kate, wondering what would become of her in the next few days. Geeze, that was hard.
This year is a lot better. Kate is meeting milestones in a good sequential order, she's just really slow at reaching them. I feel like Kate is on the verge of something...she won't stay still. She's become so motivated to do things. When I carry her around outside, she actually tries to get out of my arms. I don't know where she thinks she could go, but I put her into a stand and she'll start taking what are now her trademark big, purposeful steps! Kate has come so far...farther than I ever expected.
Today was a day of mixed emotions. We said good-bye to our physiotherapist at Blue Balloon, who we met one year ago this very day. We couldn't have survived this year without her. She was more than just a therapist. When Kate was being tested for AS, my very good friend who lives in Washington DC started a Novena prayer for Kate. He prayed that the right people would be brought into our lives who could help Kate AND help us. For me, that person was Kate's physiotherapist. Kate wouldn't be where she is right now if it weren't for her. In the meantime, there is no PT available at Kid's Ability for Kate. She will go from receiving 3x/week PT to nothing. It will be quite the change, but we will use the time to take a break this summer. It's time for a "normal" summer for us. As Jeremy told me yesterday, it's our first summer in four years without a child under the age of 2! We are due for a good one - 2009 was horrible as Kate wouldn't sleep after I fed her and 2010 was no better as we waited for her diagnosis.
We went out for dinner to East Side Marios b/c that's Jamie and Kate's favourite. It's unbelievable what Kate can eat! After dinner, I took Kate for a walk in her new stroller/wheelchair that arrived on Saturday. She really likes it, but I'm still having a hard time accepting it. It's another cruel reminder of what's happened to Kate and our family life, but it's a necessity that will help her develop good posture and stronger muscles.
Thank you so much to all of you who have answered my plea for votes for the Vivint contest. FAST is competing well with another group called Team Sanfilippo Foundation. I read about them because FAST fluctuates a bit and I wanted to learn about our competitor. If there could be something more tragic than AS, this is a likely candidate. I checked out their website. At the bottom of the info section, it says life expectancy is 10-20 years. My heart dropped to the floor and I immediately remembered the first question out of my mouth when our Dr. at Mac told us he was testing Kate for AS: what will her life expectancy be? He told me he thought 40-50 years, which I now know is incorrect. But for a few heart-wrenching days last June, I actually thought that in all likelihood, Kate would definitely go before me. The worst nightmare for any parent has got to be seeing their child pass before them, so I can totally appreciate how the parents of Sanfilippo Syndrome children must feel. I lived with knowledge like that for a few days last year and it rocked me to my core - I am amazed at how some parents cope when presented with utter devastation. To any parent out their who faces any struggle with their child, you are amazing. Thank you for giving your children good lives. It's the most important thing you'll ever do.
With that, I'm off to bed. Kate is doing exceptionally well and we are looking forward to a fabulous summer! If any of you have pools, feel free to invite us over!! :-)
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.