A Competition We Don't Want to Win

I got a lot of comments about my "My Disease" post on comparison-itis from June 2008. Lately I'm noticing a new kind of competition. Sometimes special needs parents compare abilities of their children and brag, boast, lament to position themselves as "worse off". Ugly, huh? I don't think this is deliberate or conscious. It starts harmless like, "We go to X hours of therapy a week." "We've been hospitalized 8 times this year." I've even noticed some angling when it comes to relationships with shared doctors. Implied is, "Our care is better."

I admit it's hard to keep "we" and "our" out of phrases when you discuss the health situation of your non-verbal, non-ambulatory child. You are him to some extent. When HE isn't doing well...WE aren't doing well. Shouldn't everyone know about OUR problems and how lucky YOU are you don't deal with this?

The reforming Cincinnati Mito Group cautioned we not let that attitude seep into the group, then I heard of this type of comparison permeating a particular Mito conference. One dad said it best, "Debating over whose child is worse off is a competition I don't want to win." Profound.

Yet, I've judged myself. I've responded to conversations about parents with Down Syndrome kids..."Lucky dogs." I'd love a precious child who can walk and talk, to whom we could connect better! With whom Luke could play.

Upon receiving an invite for a special families conference, I scoffed at the advertised keynotes from speakers with learning disabilities. "Errr, they are SPEAKERS, how bad is that disability?"

Forgive me for this thinking. I have repeatedly been reminded everyone is facing some sort of struggle visible or unseen. My family's situation should not be considered more or less difficult. It's just our family. I should be nothing less than grateful for the perspective our experience has given us on what truly matters. And comparison still does not matter.

I will note that having gone without a diagnosis for so long for Mitchell, I feel for the inappropriate situations when parents, especially moms, have been wrongly accused of having Muchausan by proxy syndrome. They are vocally advocating for their child's complex case without understanding. I can't imagine how hard not being believed or heard would be and would talk non-stop about how bad it is too in that case.

When I go to the bitter-side, I reflect...caring for Mitchell is not my identity. No more than Luke or Chris is or work is. My life is rich from those around me, but my worth...my self...is actualized through God, in whom I put my faith and through whom this situation is ordained. But if you push me to it, I might just find it cathartic to vent a bit about how hard being a special needs mom can be!