Very Very Hesitant

I have no real reason to be hesitant to enter the down syndrome community, but I am. I just don't know how immersed I want to be. Will I be looked down upon when I don't get involved in every 5k walk/run? Will I be shunned when I don't advocate as hard as some? Will I be an outcast because I'm the new guy? At the same time I don't want to deny Sean an opportunity to get to know more people like himself.

These are all thoughts running through my mind. Until now I have been trying to lead as close to a normal life as I would've lead had Sean been born completely typical. It's not working. He's not a typical kid. I've been trying to survive in a world I have no business trying to live in because I'm no longer a part of that naive typical world. I officially have a foot on both sides of the dividing line.

I don't fit in any one place anymore and I am finding it extremely difficult to straddle both sides of the line. I don't know what to take offense to and what not anymore. So many people tell me "I had no idea Sean had down syndrome" when I either bring it up, buy a book on it, show them pictures & ask "do you see it in this one?". I don't know how to take it. Is it a good thing or a bad thing that people can't tell? Are they lying?

When he was born I was so thrilled that he was normal looking for the most part. I always saw the downs, but I knew what to look for. There are so many negative connotations associated with down syndrome that I was so happy that he might have escape being stereotyped based on his looks. He might be granted better opportunities to excel because he looked normal. But now that I'm straddling both sides, I worry that he might be resented by his peers for looking normal. Maybe he won't be taken seriously in the community. These things are such silly things to worry about & yet here I sit worrying about them.

I am finding myself asking so many questions that can't be answered. I find myself frustrated that no one can give me the answers I so desperately need. They're all questions about the unknown.

I have been searching even harder for some glimpse of belonging than I ever have before. I search people's souls for something that tells me they're not "normal" either. Or that their kids aren't "normal". Just so I'm not alone. So I can nod in appreciation for their frustrations. Or to have them nod in my direction in acknowledgement of mine. Kind of like the Harley owners on the highways. They have the "wave" as they pass each other. I don't want to wear the scarlet letter, but I want something. I hoping that longing to belong is fulfilled soon.