Tuesday, May 2, 2017

To Want Change or Not to Want Change

The accepted thing in the disabled community seems to be to say

"I wouldn't change my kid for anything."

Those who would change their kid come across as unaccepting and a tiny bit mean. 

Some folks even think that parents who wish their kid were different
must not love their kid as much as other parents love theirs.

But I'm striving for a pure moment of honesty here, folks.
Think deeply about what's in your heart and listen to mine.

I'd love to be able to change my kids.

If I could erase the drug abuse Joe and Chris's mom did that so badly affected their brains, I would.
If I could take away Joe's anxiety and depression, I would.
If I could prevent that suicide attempt three years ago, I would.
If I could make their brains function normally without ADHD, I would.

If I could magically make Ilse eat by mouth, I would.
If I could make her immune system work properly, I would.
If I could look at her, snap my fingers, and have her walk, I would.
If I could flip a switch and give her the ability to talk, I would.
If I could make her body produce cholesterol and take away her syndrome, I would.

I don't like seeing the tears in my son's eyes when he doesn't understand his math because his mom did drugs.

I don't like that my son felt so badly about himself he tried to jump off a bridge, because his mom did drugs and it affected his brain.

I don't like that my sons can't focus at school because their mom did drugs and made their brains develop abnormally.

I don't like that Ilse endures pain and can't tell me.

I don't like that she gets hungry and doesn't understand what's wrong and how to fix it.

I don't like that she can't walk but falls down in fear when I let go of her.

I don't like that she needs nursing at night to protect her from pulling out her g-tube or choking herself.

I don't like that she can't spend the whole school day with her regular kindergarten class.

I don't like that she won't be enjoying cupcakes at school on her birthday like other kids.

I don't like the doctors appointments, the counseling appointments, the therapy appointments, and the DME supplies we get delivered to our house.

If I could give my kids a physically, emotionally, and mentally healthy life, I would
in a heartbeat.

But I know I can't.
I love my kids the way they are.
I'm thankful for our life, the way it is.

I know it's God given and God planned.
I know he has a path for each of my kids to walk
and I know their pain and struggles are showing God's glory.

But it makes me sad. 
I don't like it.

I would change it
if I could.

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