Today I was flipping through Facebook like I do most mornings. Trying to get some time for me before my bladder makes me get out of bed and face the day, get the kids up, and start the day of stairs from people, questions, and guilt.
But today I ran in to a blog post. It talked to people who don't have a child with disabilities. A lot of it I found relevant to me. I'm going to share with you the parts that touched me and at the end a link to the blog...
What you said: God never gives us more than we can handle.
What we heard: You’re fine. Quit whining.
We’re not fine. Also, it is very dangerous to bring God into conversation with a person whose faith you don’t know intimately (and sometimes even then). We bring God to these conversations by bringing kindness. We bring God by seeing, hearing, and connecting.
What you said: You must be a very special parent for God to give you such a special child.
What we heard: We are fundamentally different. I’m not even going to try to understand you.
When I first heard this, I would imagine God sitting at a school desk with a paper in front of him, just like the worksheets we used to get when we were in elementary school. There would be a list of babies on the left and a list of parents on the right. God would draw a line from the most difficult baby to the strongest parent, then second most difficult to second strongest, etc. In my imagination, a dog (God loves dogs) comes bounding into the misty, ephemeral scene, distracts God, and oops! God sent the wrong baby to those wacky Joneses!
What you said: You are an angel! I could never do what you’re doing.
What we heard: Hey, sounds tough. What a bummer. It’s a good thing you can totally handle it and you don’t need anything from me!
Yes, you could handle it. The alternative is…what? It’s your kid. You handle it. Not with any grace or style (no points for those things, anyhow), but you just do. Ordinary you, ordinary me.
What you said: Every child is a blessing.
What we heard: Suck it up, buttercup!
First, duh! Of course my child is a blessing. I love him like fire. That does not invalidate my pain. In fact, my love is causing my pain because if I didn’t love him, why would I even care?
What you said: Your faith will get your through! Or, God doesn’t bring us to it unless he plans to bring us through it! Or, With God all things are possible!
What we heard: You’re only having trouble because your faith is crappy and weak.
Here’s the deal: my faith did get me through, or rather, God did.I spent long, wakeful nights in the manner that is familiar to millions of people of faith: on my knees, the holy book of my tradition open in front of me, begging God for relief for me and my family and healing for my child. I told God that if we couldn’t have relief and healing, that I would very much like a carbon monoxide leak to take us all quietly in our sleep.
*****FYI this is quotes from a blog I red but makes points on how I feel sometimes.****
What you asked: Did you take medicine while you were pregnant?
What we heard: How did you cause this?
There are dozens of variations of this question, all of them probing for a cause, seeking to lay blame on the feet of that traditional whipping post, dear old mom. When he was a baby, my friends who practiced natural and attachment parenting thought I wasn’t doing natural and attachment parenting hard enough (A baby whose needs are met won’t cry! Pfffffffft. Suck it, Dr. Sears.). My friends who practiced more conventional parenting thought I was spoiling Carter by nursing and carrying him so much. No matter which way I turned, someone assumed it was my fault, as if I wasn’t already trapped in a giant web of self-doubt and recrimination
they are really saying, this would never happen to me. And while I want to reassure you that it probably won’t happen to you, it could. Yes, you. You, who give money to charity and always wear your seatbelt and feed your family organic foods and are a very nice person who never kicked a puppy. I know that it is very, very painful to live in a world of uncertainty and fear because I live on a cliff every minute, but there are no guarantees in this life. We don’t have (will never have) answers to questions like why this child? Why our family? There are no answers to those questions, or at least none to which we have access during this lifetime.
The world is uncertain and sometimes horrible, even here in middle class America where the grocery stores overflow with food and the roads are paved and talk radio churns its way ever forward. Crappy things happen to perfectly ordinary people, and most of the time there is no one and nothing to blame. It’s lousy and it feels horribly unfair; nevertheless, it’s the truth.
And the link for the blog is http://www.nopointsforstyle.com/2013/08/dear-people-who-do-not-have-a-child-with-disabilities.html
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