Wednesday, April 15, 2009

So much going on!

Wow, what a few weeks it has been. Lots to share!

Todd and drove to Jordan's memorial service on March 28. I'd never met Leslie or Devon in person, so it maybe seemed a little odd to spend a day travelling to support their family. But that's the weird thing with this community of IS parents...you don't need to have met someone in person to feel moved by them; love their little ones. And my heart just knew I had to be there. Perhaps it comes from my own history of losing children (2nd trimester miscarriage), perhaps it just comes from having special needs kiddo. Maybe it's both. But I am so glad to have gone down to Vancouver to love & support the Rowe family.

Devon read an incredibly moving eulogy during the service, and the text can be read here. The thing about his words is that I relate to all of them. Like many folks with special needs kids, I'm asked all the time "how do I do it"? Sometimes, I don't know! Sometimes, at the end of the day, I look at all the things I juggle, meds, school, therapies, my business, my activities, my family, my friends, and I think, "Who is this person I have become?" I was never this organized (and usually I still dont' feel organized!). The bottom line is that I'm jsut doing the best I can. Doing what I can to love Lily and make sure her needs are met. Thanks, Devon, for writing it much more eloquently than I could ever possibly do.

In other news, the day after Jordan's memorial Todd, Hank, Lily and I, along with my brother & his wife Tiffany, my mom and our good family friend Vicki all participated in the CanDo5k. It was a 5k Fun Run/Walk with a kids dash after. The organization that put it on, Northshore Special Families, is a group supporting parents, kids & families with special needs. They're a really neat organization that I'm hoping to become more involved with.

Anyhoo, we just did the 1k walk. We didn't know if Hank would make it the full 5k, plus they were calling for SNOW on the day of the walk! Sheesh! Well, we had a great time at the walk, and Lily even got out and walked the final 20 yards to the finish line! We all crossed the finish holding hands, our family of 4. A proud moment for this mama, to be sure.



Lily has also started her ABA therapy! We've only had three sessions so far, but it is INCREDIBLE what she can do after such a short time. She already understands "Lily, sit down in your chair!" and will even come from a few feet away to sit in her chair! She can identify and pick up a ball when it is placed in front of her with another object! And she's beginning to match 2D pictures with their 3D objects. I can't wait until we get the therapy going 3x/week. I jsut know she's going to pick this stuff up rapidly.

Finally, we went over to my family's cabin for Easter weekend with my parents, brother & Tiff. It was just looovely. Fantastically relaxing, good food, golf, and a 2-hour-long-nap-with-Lily! Divine. On Saturday, Todd and the twins were playing on the trampoline and Lily was just laughing hysterically. Naturally I videotaped it and want to share it here. Lily basically didn't laugh for the first 2-2.5 years of her life. One of the first things that she lost when her seizures started was her smile and giggle. And she has just an infectuous giggle. So every time she laughs now, its just the most magical sound.

2 comments:

baby trevor's mommy said...

There is definately a special connection with us IS-ees...

Love the new stuff Lily's doing! Makes my heart SO happy! As did learning that you did the 1K walk rather than run! I was beginning to feel like a big fat slug! *wink*

...danielle

Hua said...

Hi Katie,

I wish you guys all luck on Lily's therapy! I'm glad you can finally hear her laugh.

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