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When My Son Said, ‘You Don’t Know What It’s Like to Have a Body Like Mine’

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Dear Trevor,

2014 was hard on you. It was another year without answers, but a whole year in which you’ve grown, and your peers have grown, and you’re realizing that your life is different than theirs. It’s been another year that you have to carry the burden of a body that fights against you, and it’s wearing on your little tender soul.

You have experienced more anger this year. More shame. More fear. More defeat.

When you try to ride your bike, and your sister zooms around the driveway while you watch, it hurts. When you try to ride your scooter, and your sister whizzes off on hers to go play with a friend while you’re still trying just to manage balance and steering at the same time, it sucks your spirit dry.

And when you fall, it hurts. (Not your body, you’re used to falling. )

It hurts your soul.

It’s OK, Bubba. I’m here to tell you that it’s OK.

All year I’ve been fighting your despair, and getting frustrated with you for your emotions. I’ve been impatient with your fear, and fighting your anger. I thought it was because I don’t want you to feel those things (and I don’t), but now I realize — it’s because I am afraid of those things.

Somehow I think that if I can just stop you from being angry, sad, hurt, afraid, embarrassed… that you will be fine. That you will move through life without trials or trouble, and that you will have the life that I envision for you.

I’m promising you now that I will let go of those fears, and just let you feel yours. You told Dad a few days ago:

“You don’t know! You don’t know what it’s like to have a body like mine!”

You’re right. We don’t know. I have been reacting in fear, and forgetting who you are.  You are bright and strong, you are joyful and social, you are fun and active. Somehow I am forgetting to trust those things, and I am panicking that you will become withdrawn, helpless, and bitter.

I will trust you.

We will still push you to be strong, and to be your best. We will still encourage you to try and try and try and try again. We will still expect you to give everything you’ve got, and to refuse to be defined by your disability.

But when you are feeling broken, you can break with us. When your tears come, you can cry in front of us, or you can walk away and cry with privacy. When you’re angry, we won’t tell you you’re wrong. When you’re afraid, we won’t dismiss your fears.

2015 will be a year where you have more room to be you, more space to feel how you feel, and more freedom to figure this out. We know who you are, and we will be here – not to micromanage your emotions and reactions, but to be your anchors, your support, and your sources of strength.

Be patient with us.  We are learning so much with you.

Your Mom and Dad

This post originally appeared on “Little Blue Engine in Braces.”

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Originally published: April 2, 2015
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