Blessed Chaos: June 2007

Do You See What I See?

6/20/2007

Evidently Wil did not. His latest opthamology appointment revealed declining eyesight. His doctor said things have been pretty blury for him, so. . . one of the issues that we were hoping to avoid is our newest challenge. Glasses. Here he is with his new specs.

I know what you are thinking. "Oh how cute" and "look how well he is keeping them on." Just so you know, not doing so well on the latter. I am holding his arms down here to keep him from yanking the glasses off and chucking them across the room. He had also calmed down a bit after much song and dance from the rest of us. Here is how he really feels about them.
So we have something else to work on. Hopefully he will begin to make the connection that he sees much more clearly with them on. For now we are aiming for a few minutes at a time.

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Dreamnight at the Zoo

6/04/2007

*Since Wil entered our family two months before he was due in 2005 we have been on a sharp learning curve. Learning about his diagnosis, Down syndrome, as well as heart defects and other medical issues associated with Ds. We have learned about various types of therapies and the importance of early therapeutic intervention for Wil. In addition to his primary pediatrician Wil has a team of seven pediatric specialists and four therapists in his life, and ours. We have learned how to talk to insurance companies, dispute denied claims, and push for coverage from government agencies designed to help medically needy children. We have learned about special needs education and special needs trusts and have had to consider, already, who will care for Wil when we cannot. We have had to learn how to deal with behavioral issues for a child who does not always understand correction. Wil is an absolute delight and Wil's care can be taxing. Apart from family and close friends few understand just how taxing our days can be, or so we often feel.

*That was not the case last weekend. Palmetto hospital here in Columbia, along with Riverbanks Zoo, hosted a very special night for the special kids in this community. Each child received a personal invitation and tickets for their whole family. It was called Dreamnight 2007: Under the Big Top. The Zoo, closed to the public for the evening, took on a circus theme and using well over 100 volunteers from around the community hosted a very unique evening that included a complimentary dinner, animal shows, animal feedings, clowns and more.

*I have a few favorite moments from the evening. The first took place when we were waiting to enter. Everyone was gathering out front waiting for the clock to strike 6:00 while being entertained by the zoo employees walking around with uncaged animals. Wil was in his stroller when this little boy, about five years old, came running over to him (his mom not far behind) pointing and saying "look, look" (with a silent 'L'). Like Wil, he had an extra chromosome and extra personality. He was chatting away, we understood very little except the excited "look" that peppered his monologue. I tried to ask his name a couple of times, he didn't care for this as was evidenced by the silent stare he gave me before turning back to Wil. His mom just looked at me and said, "yeah, don't interrupt him, we're working on that." After several minutes he spotted another little one with Down syndrome and was off again - his mom following after him.

*The next moment was walking into the zoo. We were ushered through a tunnel of people, all volunteers from the zoo and around the community, clapping and cheering and blowing bubbles. It was one of the most touching things I have experienced in a while, in part because I knew that some of the families present had been through so much more than we have and with much less support.

*Another favorite moment involved Luke. We were talking with a young man that was in a wheelchair because he had no legs. He only had small stumps just beyond his hip joints. Luke was observing the different wheelchairs around and the young man was telling him what hard work manual wheelchairs can be. Luke looked at him and said, "yes, and I see that you don't have legs, only knees on your seat." He was remarkably gracious and, I think, appreciated Luke's innocence and honesty. So did I.

*So here are a few pictures from our Dreamnight. (The dream didn't last long though, by that evening Luke had developed a high fever and a peculiar rash. And as I type this Wil is on day two of the same illness and Timothy is just beginning. Back to reality!)