Friday, March 14, 2014

Please Don't Call Me Courageous.

I've been chewing on a blog post I recently read, I know what the author means, and I know she only wants to offer her support to all the parents of kids with special needs. I get it. I appreciate it.

Now I'm going to pick it apart a little, because that's how I roll.

Click here for story.

"Having a child with a disability can be difficult. There are moments when you wonder if anyone will ever understand or get what it's like to walk in your shoes. You parent a child with special needs and sometimes you feel alone and invisible.
But you are not. Today, I want to tell you that I see you."

*waves* I see you too! Did you come up and say hi? Did you look my kid in the eye and say hello to him, or were you the one watching from a few feet away, with "that look" on your face? We know the look, the "Ohhhh, look! What a GREAT mother to deal with all of that..." one.

"I see you in the middle of the day, tired. Your hair pulled back in a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful."

I honestly don't see what I do as a sacrifice. I'm a mom. You're a mom, too... and if your child should, God forbid, become disabled due to illness or injury, would you see all the things you've given up- whether material possessions or time and energy for going out - as a sacrifice, or just chucking the unimportant stuff of life aside because you see just how little else matters because you HAVE your child.

BTW, I looked like that a lot of days before I had either of my children. Good to know I'm still hot stuff. ;)

I see you at the ballpark, cheering and encouraging the kids playing in the Little League. Yet, I know while you cheer your heart aches, wishing that your son could play ball too, not in a special league, but here, running and moving his body like those kids rather than spending his days in a wheelchair. You are courageous."

I'd be lying if I said I had never wished for more. My heart has been torn apart wanting Steven's pain and struggles to be gone. I don't think that feeling is a stranger, no matter what stage of life your child is in.  It comes and goes. But, please... just trust me that if you think I'm unable to find joy watching able-bodied kids at play without pining for what my son doesn't have, you really don't know us at all.

And while I'm at it... have you been to any of our "special league" games for any of the multiple sports Hope, Inc. has offered kids of varying abilities?

I know you probably haven't if you infer it's some sort of consolation prize. Our kids kick ass, thank you very much. They're also the courageous ones, but they're too busy being kids ripping around after the ball to have time to wear that crown right now. It gets heavy, and might get bent in the middle of that multi-chair soccer demolition derby cluster, lost on the sled-hockey ice or even shot down the ski hill.
"I see you at social gatherings where well-meaning people ask ignorant questions about your child or her disability, make hurtful comments or fail to recognize that your child is a child first. You don't get angry, you don't yell. Instead, you smile, answer their questions politely, and you educate them in a gentle manner, and thank them for their concerns. You are gracious."

Not always. I'd imagine this blog entry would be seen as distinctly NOT gracious by some. Sometimes, what looks like grace is a good poker face and the knowledge that most people mean well. The nasty people these days tend to hide on the internet, so satisfying asshole-smitings are few and far between.

I'm a mom, not a saint. I've done stupid things in my life, made poor choices I wish I could un-do. I'm going to give you an earful sometimes because my Sainthood Card got lost in the laundry last month, but I also have the tact to hold back and NOT blast you for saying something stupid, like how your kid's ear tubes were JUST like my son's brain surgery, so you know JUST how I feel.

I'm not responsible for the actions of my left eyebrow, though. Fair warning.

As for the rest of it, that's what all mothers should do... look out for each other.

I'll come to your able-bodied kids game and cheer embarrassingly loudly for him or her, if you'll come to see our game and do the same. There will be coffee. We'll both need it.


1 comment:

  1. You amaze me my friend....every day...every hour.