The Look

Dear New Mom,

You don't know me, and if you saw me, you'd probably never realize who I am.

I'm the mom who was pushing her son in the wheelchair through the mall today, the one whose eyes you couldn't meet, whose child you did everything in your power to look away from as you pushed your likely days old baby in a stroller.

I just want you to know-I noticed. I saw the look. And I don't blame you. I'm not angry. I want to reach out to you and calm you.

I've seen that look a million times-when he could walk, but his feet weren't right, when he has a meltdown in the middle of the crowded store, when he drops to the ground, claps his hands over his ears and rocks back and forth, humming to himself to drown out the sensory input he can't handle. I've seen it even more in recent weeks since his surgery and the start of our use of a wheelchair.

It's the look of fear, the look of "Oh God, that could be my child!" Also known as the "Oh thank God that isn't me, that poor mother and child!" look. The look of utter horror and pity mingled.

Do you know the odds of your child turning out like mine? To have all his issues rolled into one child? Astronomical. It's not going to happen, most likely. We hit the jackpot; that doesn't happen often.

The odds of an autistic child? One in sixty-eight.

The odds of a child with cerebral palsy? One in two hundred seventy-eight.

The odds of a club footed child? One in a thousand.

The odds of a child with Von Willebrand's Disease? Only 1% of the population is affected.

The odds of a child with brain damage resulting from loss of oxygen at birth? Again, approximately one in a thousand.

And that's just the main things he has, the "big problems." The odds that your child will turn out like mine? Slim to none. He's pretty unique.

So. Back to The Look. I know it well, and so does he. We talk about that look anytime he sees it. He doesn't like it, but he is slowly beginning to understand why he gets it.

"It's because I'm different, isn't it, Mom?" he asked me today.

"Yes, it is because you're special."

I hate that he knows that look. I hate that he understands what it means. But I don't begrudge you your fear. I don't begrudge you that look, that inability to look at him, as you say a silent prayer that whatever happened to my son (for how could you, a stranger, possibly know?) doesn't happen to your peacefully sleeping infant child. I was you, once. Before all this, before we knew, before all holy hell broke loose in my life. I was you, the one who thought it would never happen to me, until it did.

I just want to reassure you, even though it did happen to me and my son, it's not likely to happen to you and your child.

Peace in your heart, Mama; enjoy your baby. He'll be fine.

Me

The most beautiful thing I've ever seen

Today was the day. Your icky casts came off at last. You could hardly sleep last night, you were so excited. We bought you brand new Ninja Turtles tennis shoes to wear, to celebrate the end of this leg of your journey. We brought your brother to great grandma's house, and you and I went to Nemour's. You were so excited all the way there. You announced to all the cars that passed us and all the people we saw that you were finally getting your casts off.

The techs came into the room with the saw, and noise cancelling headphones for you. You played the handheld, computerized Yahtzee game great grandma sent with you, and they began the process of taking off your casts. I concentrated on you and refused to look until both casts were off.

And then they were.

And then I looked.

I never knew feet could be beautiful. For the first time in your life, your feet were straight. Your toes pointed straight up to the ceiling. They were covered in pus, and peeling skin, and dried blood under the bandages, and metal sticking slightly out of the bottom of one foot, and they were the most beautiful feet I had ever seen. 

I cried. 

There is nerve damage in one foot, and no telling when you'll walk again, but your feet are straight, and they are beautiful.

We got home, and I put you in the tub for your first proper bath that didn't involve a bucket and a sponge in two months. When I pulled you out, I got my first look at the scars you are left with. You hate them. 

"I'm ugly, Mom." 

Oh my darling. No you're not. I pray one day you read this blog, or my FB which turned into an unintentional Mommy diary, so you can see these scars through the eyes of the person who loves you the most: your scars tell a story.

I look at those scars, and what I see is my beautiful blue baby boy on the day he was born, and the strength he showed me even then. I see a little boy who fought against the odds and won, who wasn't supposed to walk but did, who wasn't supposed to talk but does. I see a fighter, a little boy who doesn't know the meaning of the words "you can't" and who doesn't believe in "you will never." 

I pray one day you see this, see your journey through the eyes of your mother, and that you are able to look at yourself in the mirror and say "I am wonderful. I am perfect. My scars are not ugly-they tell the story of the fight I fought that most of my friends will never know." I hope you are able to look at anyone who makes fun of you (and my darling, I'm so sorry-I know there will be someone somewhere who will, it's sadly inevitable) for your scars, and tell them "This is my journey. You didn't live it, and you do not understand it, but I am proud of the fighting spirit these scars represent."

Even if you aren't, I am. 

You are amazing, sweet boy. I don't deserve you, but I have you, and I thank whatever lucky stars aligned to have that happen.

You are the most beautiful thing I have ever seen.

Bad day, so here ya go

Autism means...

You know your letters, but not your ABC's.

You can take apart my laptop, but you can't turn on your toy computer.

You can successfully give me the history of roller skating in the 1920's, but you can't skate.

You can spell your name, but you can't hold the pen to write it down.

You can quote whole movies, but you can't tie your shoes.

Autism means....

You don't understand the differences between emotions, but you can finally give snuggles.

You are terrified of Big Bird, but you'll put up with him to make your little brother happy.

You don't like change, but you're learning to deal with it.

Your words came later, but they mean so much more.

You don't do things the way you are expected to, but you do them anyways.

Autism means...

You are different, and different is good.

You know you are different, and you don't like it.

You don't like it, but you learn to handle it.

You learn to handle it, and you smile while you do.

You smile, and my whole world lights up.