Most people, I’m sure, have been in situations where they don’t quite feel like they fit in. But how do you deal with not fitting in anywhere? When even the specialists are baffled, like an archaeologist who just found evidence of a prehistoric, pink and purple, polka-dotted flying frog?
It’s often hard to remember that others also have experiences like this. But once in a while we see reminders, like a recent article at themighty.com:
And, in response, here’s our view.
Melora has joint contractures (#arthrogryposis), but they’re pretty mild and she’s been labeled “functional”. So she doesn’t really fit in with the others with arthrogryposis who have fifteen surgeries in their first year of life, but can speak and do most things everyone else does.
She doesn’t talk, even a little, no consonant sounds at all. But she doesn’t really fit in with the “nonverbal” crowd who find other ways of communicating and can run and play with the other kids.
She doesn’t really fit in with the other intellectually disabled kids who still make eye contact and smile for the camera.
She doesn’t really fit in with the kids who have cerebral palsy; she doesn’t have involuntary movement or spasms and, again, can’t speak at all.
We’ve found syndromes similar to hers (Rett Syndrome, Angelman Syndrome, Mosaic Down Syndrome), but they’re slightly different so we can’t just walk in to a support group and say “Hey, we belong here”. We’re just out-of-sync enough to be one tiny step to the side of everyone else’s reality.
So, how does a family deal with being so very unique? We try every day to remember that Melora is our sweet, unique little bundle of living proof that we’re all the different but the still same. ALL PEOPLE must always remember that our differences don’t have to separate us; they can teach us and help us be more compassionate.
Hugs, and thank you for reading.