Sometimes I think it would be easier if she did though. I mean, the Down Syndrome community and Autism families all seem to have each other to lean on. Visually Impaired kids have camps to go to. There are tons of support groups for kids with Diabetes and even Epilepsy. There are walks and rallies raising money for a cure for specific syndromes.... but not one that encompasses all of our issues.
We weren't allowed to attend the Diabetes class because they thought we would confuse the other parents and educators. Kendall's an exception to every rule on the Ketogenic diet. When her Ketones are low, we give her apple juice. When they are high, we give her insulin! I can't read the posts from the cataract/aphakic list serves anymore because they bitch and moan about having to patch their kids eye for 4 hours a day. Cry me a river.
If we did a 5K for every diagnosis Kendall has, we'd be walking every weekend until Christmas! We don't really have a reason or a one word diagnosis. She has multiple issues, none of which are related, and she's one of a kind. I usually just say Cerebral Palsy, and I guess that just about covers everything....minus the Diabetes and cataracts.
I guess I don't really need a crowd for her, and I'm sure she couldn't care less. I'm secure in her being her and our family being who we are. But it sure would be nice when filling out insurance forms, Dr.'s office forms, or school forms to check one box instead of 15. Or to answer the nosy old lady at the grocery store with one phrase.