Being a part of the SB community has been my saving grace time and time again. There have been people to educate and comfort me, to tell me what to expect, to remind me to count my blessings, to listen when I rant and to listen to when they need to rant. The importance of this community in my life is vast. My desire to give back is also strong.
However my family doesn't always fit in with the community. Adults with SB grow weary of parents asking the same questions over and over about their children. My son is someone with SB who is expected to walk. My son has only had 4 surgeries, and that may seem like a lot, but it can be a drop in the bucket for many in the SB community. We met a 12 year old who gets around in a wheelchair and has had 42 surgeries at clinic. How does one run to people with such patience and strength to whine about a shunt revision? The truth is, many of my peers in this community have much more to deal with on a daily basis. I do not have the energy or patience yet to tolerate rude strangers for the sake of being an ambassador for SB. Many people I've met in the SB community grit their teeth at the stares and intrusive questions and take time to educate people.
My family doesn't fit in with the non SB community either. "He's all special and stuff," a family member said to me once, despite having no ill will behind it, it sticks with you. Other women with babies around the same age post things about wishing their baby wasn't mobile, pushing them over with their foot because they aren't ready for them to move so much, or saying they aren't ready for the milestones. I feel a twinge every time I read something like that, but I'm unsure how I'm supposed to react. I rejoice every single toe wiggle, wobbly attempt at sitting up and anything remotely crawl like. When you look at Kemper's pictures, everything seems fine, his development for the most part, is on track. But it makes my chest hurt when people I love say, "You'd never know anything was wrong with him."
Lets get something straight, there is nothing wrong with Kemper. He is not "special." He is living with SB and has needs that coincide with that. Will I be angry if you use the word cripple in front of me? Yes. Thankfully when this did happen I was able to take a breather and come back to discuss it calmly, finding out that the person who used it has family with disabilities who used the word cripple to describe themselves. She meant no offense. Will I dislike it if you use the word retarded the way I used to, without cause or care of how it may affect someone who overhears? Yes. While Kemper's SB is a physical disability, my way of thinking has changed. The world is bigger than my family, than the SB community. Everyone deserves privacy and respect.
Still, this leaves us in a perceived no man's land, stuck somewhere between communities. I'd like to say there are no lines, but there are. Maybe one day I'll find my niche in blurring those lines. But for now, I'm struggling not to rage on people who stare at Kemper's head incision. Thankfully, no one has asked about it while we're out in public.
Truth be told, I don't look very approachable, but I never thought it would serve me so well. Later on down the line, when I've figured out how to handle these things, perhaps I'll greet stares with a smile. But I kind of doubt it. So, I'll just take a deep breath, enjoy my baby, and do what comes naturally, not worry about fitting in.