I was talking to a mom that has a somewhat severely mentally and physically handicapped child. He wears braces on his legs and is more at the level of a 2-3 year old rather than his six years. I forgot what exactly his official diagnosis is, but it doesn’t really matter for the sake of this post. Physically he looks pretty normal but she told me that sometimes when she goes into a store she’ll put on the braces because then people avoid her and don’t ask stupid questions like, “why is he so small?”, “why isn’t he talking?” etc.
It’s stupid and frustrating. I feel the same way, I am still sensitive enough to get my feelings hurt by a well meaning stranger! But talking to her I began to realize that it’s not so much the feelings getting hurt, it’s the verbal acknowledgment of your hearts biggest sorrow and loss. It’s like your first real love dumping you, that pain in your chest is a constant companion and talking about it re-opens the shallow film of healing that had begun.
Summit’s physical therapist told me a few weeks ago that she is going to put braces in Summit’s shoes to help him walk. I cringed- we have narrowly skipped glasses at this point- but then there was a sick freedom in the idea that FINALLY things would be a little easier, Summit would look the part, so to speak, fit the bill better as he really is. I wouldn’t have to tell people at Sam’s Club how old my charming little boy is and then hear the 20 questions or see the raised eyebrows. They will avoid us and think to themselves, “I’m so glad my child isn’t like that, I don’t know how they deal with it”, because that is exactly what I used to do.
The thing is, I don’t fit anywhere. I don’t fit with “normal” because Summit isn’t. I tried going to a group that has outreach for handicapped children, but their children were so, so much worse than Summit that I felt guilty for even being there, like I was pretending something was wrong. He is high functioning, never will be normal, but those parents were jealous still. I have actually had several people say if they could pick from the list of syndromes, that they would pick what Summit has. Really! I mean, I know they mean well, but dang.
and I’m tired of well meaning people.
When I’m around my friends with “normal” children I want to cry or vomit. I’m so jealous, it’s sick! I hold it together, but choke back tears when a child half Summit’s age performs a simple task that he can’t. It’s physically painful for me. I feel like my insides are getting split in two. No, knowing what my child has does not make it any easier.
I say trust in God, but do I really? I am coming face to face with so many of my deep imperfections and I don’t like what I see. I feel this night will never end, my bed is soaked with tears, I don’t care what I eat or wear. (Unless it is Sunday, then I have a resurgence of my old, well groomed self- also I’m fighting the braces gloom of I-look-like-crap-all-the-time-isms.) I read the bible and it hurts me too, passages so beautiful and full of true life that I’m seeing through a dirty lens. My God speaks gently to his child broken on the ground, comforting words of which the meaning hasn’t fully sunken in my soul. Love me with your heart, not just your mind, he whispers. I am trying. Rest, my soul, rest.