Friday, September 23, 2011

NYC Buddy Walk . . . thoughts

Tomorrow is the NYC Buddy Walk, it's our second year going. Seth will be four in December and yet it's only our second year going. Why didn't we go the first two years? Why did we choose to sit out on something that directly impacts our sons life?

It's a hard question to answer. Here's the lie I probably told too many people to count - he had croup. Which is true, Seth has had croup more times than I can count and he might have had it then. But the real truth is I was scared.

You see the Buddy Walk would put me in a position to confront my biggest fears about Seth's future. Because not only would there be the cute infants and toddlers there with DS, as there are on all of the message boards I'm a part of, there would be adults with DS as well. And that's what scared me the most. Looking into their faces, talking with them, interacting and saying to myself "I don't want Seth to be like this when he grows up." Horrible for me to think but there it is. I didn't want the reality that Seth might not be as well functioning as an adult as I would like. That as a grown man his speech might be unintelligible or he may have problems understanding others cognitively.

We went last year, partially because Seth is big into Signing Times and loves Rachel Coleman and I thought it would be so damn cool for him to meet her. And it was really cool. Rachel Coleman is very sweet and fun and genuinely loves what she does and cares for the kids. I really enjoyed watching Seth watch her, he was fascinated and he loved every second of sitting for that show, in the 90 degree heat, sweating but with a huge smile on his face.

We didn't know anyone in real life last year who had a child with DS. We went solo, we went alone and we felt very much alone. All of these people were meeting up with friends and family, and there we were, just us three, walking along, not knowing what to do or where to go or what was expected. It was a little sad, but it was a road we walked together and we got through it like we always do.

The saddest moment though was when I was on line for food from this organic food cart. We were starving after the walk so we decided to purchase something to eat. Now there are many stands that you get raffle tickets for free snacks but this stand you had to pay out of pocket. There was a man with DS behind me and he asked me if this food cart took the raffle tickets and I told him that they did not. He looked confused and upset and left the line. Looking back I really wish I bought him lunch that day. I feel so bad that I just stood there, that I didn't do anything. Now I don't know if he was with someone or if he was hungry or his story at all, but I thought about Seth in about 20 or 30 years.

I thought about this the other day as well. Seth in his 30's, me in my 50's and 60's, would I still be able to take care of him if need be? Am I looking forward to taking care of him my whole adult life? What are the other options? Another thought was "will I outlive him?", what parent outlives their child? What kind of sad life would that lead to? So the fear of seeing adults with DS is very real, because this is not a short journey with Seth, it's a lifelong one, lifelong meaning that either I or he goes first back to God but I'm horribly frightened at either notion.

I also have to think that these adults didn't get the same therapies and care as our children with DS do today. There is so much more information out there, about therapy and medical problems, parents of children with DS have a lot of resources to help them. It wasn't like that fifty years ago. So I know in my heart that Seth has already gotten a better start than these adults did, and I hope that that is enough, I hope it makes him a happier adult later on in life.

Tomorrow I might be sad again, might have those twinges of moments that I wish I didn't see or fears for the future. But I do know what I absolutely will have, backup. You see this year we are not alone, this year we are going with two other wonderful families who have children with DS, this year we are bringing support. And it will be so much fun.

Seeing Rachel Coleman again is so worth it as well!!!

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