It Doesn't Go Away - (Special Needs Mom Post) - January 29, 2011

I want to believe the best of people. When someone first gets the diagnosis for his/her special needs kid, whether it's at birth or later (like...me!), most people probably at least try to be supportive, right? I mean, there's always SOMEONE being jerky or unhelpful, but I think for the most part people are good and are there for you or bring you food or listen to you cry and vent and cheer. The jerky ones fall away quickly (or should!).

But the thing is, a week, a month, a year, ten years after that moment, the diagnosis doesn't go away. And yet, I'm thinking sometimes people think that the parent should have moved on and stopped talking about it and started...getting over it.

Or maybe it's just me. It's probably just me. Let's talk about me, shall we?

My kid will always have cerebral palsy. Even when she walks unassisted and talks (because she will!), she'll have it. It will be a part of her life and of my life forever. I will always have stories about it. Hearing someone laugh about "will this [innocuous thing] cause brain damage to my fetus? tee hee!" will always strike a nerve. Listening to someone talk about their child's milestones when their child is years younger than mine and doing things mine cannot do will always sting (at least until she catches up, because catch up she will). For now, still early in our journey, things are fresh. It's been about two years since we started getting some answers - so little time and so very much. Maybe I'll feel differently in ten years or 20. But this is my current reality and there's no escaping it. Maybe someday it won't be as big of a deal in my or her day-to-day life, but it will always be there.

I can't stop talking about Being the Mom of a Special Needs Child because it is who I am now and who I always will be. I can't get over it or get past it or move on. I can cheer on my kid and her amazing accomplishments day by day, moment by moment. I can support her and love her and give her strength. But this isn't a topic of conversation that's going away and it's not a set of emotions that I'm going to ever move on from, even if they fade or I learn to deal with them. It's not finite.

Please. Be kind to your friends with special needs children. Watch your language. Listen to their stories. Evaluate how they might react to your own worries, hopes, or fears.  Don't hide things, just be gentle when gentleness is needed. But above all - please please please NEVER ASSUME ANYTHING. Just because I say X doesn't mean anything to anyone but me. Everyone is different. I can only speak for myself - but I know that assumptions almost always are hurtful.

Want to read a great book? Check out My Baby Rides the Short Bus - an incredible collection of essays by parents of children with a wide range of special needs and conditions.

General disclaimer: Posts like this are all about me and my perceptions of my world and are not intended to be used as a universal guide. I change my mind and my situation changes on a constant and steady basis. I reserve the right to change my mind, to write in the future that I feel differently, or to disagree with you while we find some common ground. I'm learning to be more open and this is a step.