Looking for a place to belong

I'm searching for a place to really belong and I don't think such a place exists.

I recently joined a mail list for families that have had fetal surgery for Spina Bifida (henceforth known as FS4SB). They are a great group of people, several of whom we met at the Fetal Surgery reunion two weekends ago, but it seems they are all dealing with things that we don't have to worry about (at least not right now, maybe not ever). There is a lot of discussion about bracing, wheelchairs, walkers and crutches, physical therapy, meds for dealing with bladder issues, and stuff like that. Today a discussion popped up about late talkers, and how many of the kids have been delayed in that area. Alison doesn't wear (and has never worn) braces and she doesn't need a wheelchair, walker or crutches. She started walking at 15 months. At this point, she hasn't needed physical therapy either, and though she may get a referral for it soon, it's to deal with her in-toeing right foot, not to strenghthen her body so she might one day be able to walk. At this point, there are no real bladder issues. Her urologist saw her last year, at 16 months, and isn't expecting to see us again until she's 3. As for talking, by 18 months she had a 60 word vocabulary and could even string together a couple of 2 and 3 word sentences. I feel that I have nothing in common with these people except that Alison has SB and we had FS4SB.

I also post on an AOL board for moms of kids born in Sept. 2002 (ok, so Alison was born in August, but she was due in September and I've been posting there since I was pregnant, before FS4SB). Again, a great group of women. It gives me an idea of what the average 2 year old should be doing. Alison just had an evaluation with Early On yesterday and, without even adjusting for prematurity, she is at a 2 year old level in all developmental areas tested, including gross motor skills. I have everything in common with these women except that Alison has SB we had FS4SB.

So I feel like I'm caught between two worlds. For the most part, we treat Alison like a regular kid because for the most part she is a regular kid. Most people who see her have no idea that she has SB. And I've actually, recently, forgotten to tell people who probably need to know (like people working in the church nursery when our nursery supervisor isn't there) because I don't think about that much anymore. But that doesn't change the fact that she does have SB. And I feel we should probably become more involved in the SB community. But at the same time, I feel guilty because we don't have to deal with what everyone else does. So I'm back to looking for a place to really belong....