THE BLOG
06/24/2015 03:04 pm ET Updated Dec 06, 2017

The Celebration

There is a mom crying in the back of the music room.

We have been invited here, for a celebration of the achievement of our sons -- her son, my son, two others -- in adaptive music, music for children who are disabled. The really disabled children. The ones who sit in a different classroom entirely for most of the day.

At the music celebration, the children get up and move and dance, each in their own unique way, a strange amalgam of their disability and their progress. It's painful and sad and wonderful and amazing. It is music, of course, but these children can't talk, so most of them can't sing.

Except my boy. My boy can sing. My boy can't talk, but he can sing. He can SING.

Even though his voice emerges in hushed tones from his rarely used vocal chords, you can hear him try for pitch and intonation. He raises his eyebrows as he pushes his voice up higher. He understands soft and loud, and when the sound strengthens, his mouth grows big. I'm not used to seeing my boy like this -- doing all the things exactly right, even if the work has been brought down to the just right level for him.

It's a gift to me, this celebration of music. I am proud. It is a "best day" in my parenting journey, the kind of day you remember. The kind of day you write about.

But there is a mom crying in the back of the room. It is not a "best day" for her.

Her boy struggles with keeping the beat, he wanders around the classroom, lost in the disability everyone in that room has come to hate to love. He holds two drumsticks, chews on the end of one. His aide has to help him tap the sticks together.

His mom is crying -- she is sobbing loudly. For all sorts of reasons I understand and for all sorts of reasons I do not.

I am usually her.

And this time I am not.

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In the world of disability, your boy, your daughter, you -- sometimes you are on the top. Maybe this is true about all of parenting in general. Sometimes you are the example, the one who the rest of us in the room aspires to be. If he could just talk like that other boy. It's not something that you think out of jealousy or condemnation. You just want that for your child too. You want it so much.

Other times you are barely hanging on. You are the parent of the child who cannot speak, you are the parent of the child who is sitting in the corner of the room, covering his ears, moaning. You are watching someone else's child set the example, change the game. If he could just talk like that other boy.

You are a mom first of all. Just a mom. And you love your child every minute. This never stops.

But it's not easy to be that mom. The mom who knows that even in the room, where the kids are all disabled, her child is the most disabled of all.

I've been there. So I know.

That mom was crying, big heaping sobs. That mom was apologizing, I'm sorry, I'm sorry -- it's just -- she gulped loud and hard.

And the other moms nodded. She had nothing to apologize for, not to anyone in the world. Certainly not to anyone in this room. We cheered for her boy, his successes relative to his limitations. We, the moms in that room, we understand all about perspective.

The children were dancing, the teacher was smiling. That mom was crying.

And I said nothing.

Because when I am that mom, and I am her so very often, I don't want to hear that it's ok, it's going to be ok.

Sometimes it's not ok and there's nothing you can do.

Sometimes it's not going to be ok. And that has to just be ok.

After the celebration, I walked through the halls of the school where little children still need to be reminded to walk and keep your hands to yourself. I thought about my boy, 11 years old, with his wide blue eyes and coarse blond hair, back in his classroom now. I walked by that room, where the door locks shut and three teachers stay with four children all the day.

The school year is nearly done, my boy is going to middle school next year. Things can change.

Boys will be boys. And yet. Boys are not always boys.

I could see the dark hair of that mom, through the cloudy window on the classroom door, inside the room standing with her son. I could have said something to her, I could have touched her shoulder and not have uttered meaningless words. I could have only said something true. I could have said, "Your boy is beautiful." Because he was beautiful. He had dark brown eyes and a mouth that turned up and fair skin.

Helpless and understanding and meaninglessly, I had merely smiled at her. I just smiled.

She did not smile back.

I walked down the hall and out the door of the school, thinking about that mom, her boy. I thought about my boy and the way he closed his eyes when the music started and twisted his face up in the overhead lights.

It felt so good to celebrate something meaningful, just this once. I was so proud, so thankful, grateful.

And I felt so guilty for being so proud.

He was singing. My boy who has never said I love you.

I did not go into my son's classroom. I was tired of disability for today, I was tired of school for today.

Disability is a community that brings unwilling people together in one room, people all just trying to make the best of it. No one chooses to be in that room together. But the amazing part is that we still make the best of it.

This is how it goes.

In two short minutes I run from the classroom, down the corridor, out of the building.

Sometimes, after a celebration, you walk the hall together. Thankful, happy, grateful -- together.

Othertimes you keep your head down and you just go. You do not stop, no one has anything much to say, and what could they say, really?

No running, please. It is important to sometimes remember to keep your hands to yourself.

You have no choice with what you're given, as a parent, with disability. It is what it is.

What is amazing is that you will make the best of it.

But still, sometimes, you have to walk down that hall alone.