“Joseph Cariello,” the moderator announced, “Congratulations on a great spring season.”
The boy stood from his seat, adjusted his glasses, and climbed the steps to the stage.
Dressed in khaki pants and a plaid shirt, he stood tall, with confidence.
Watching him, my heart swelled with pride for who he is, and who he may become.
At the exact same moment, my mind flashed to another boy named Jack, sitting at home.
He is also tall.
He also wears glasses.
He is seventeen years old.
When we’d left for the awards ceremony, he was baking a cake. Carefully, he poured the batter into the pans, and set the timer for the oven.
In halting tones, he explained “the plan” to watch his favorite show on television.
He always has a plan.
He promised to lock the door behind us and call if he needed anything.
He is seventeen years old and we can’t leave him for more than a couple of hours.
He is seventeen years old and he cannot drive a car, or have a full conversation on the phone, or negotiate the social landscape of friendship.
This is the tale of two brothers, born thirteen months apart—close in age, yes, but so wildly far apart.
One brother is headed to college in the fall and rowed for the crew team and has a girlfriend and a car.
He may go on to have a career and build a family and live in a house.
The other brother will likely live in a home, not a house.
A house is a dwelling your own making, you see. Maybe you refinish the floors, or replace the cabinets. You remove the wallpaper, and consider building a patio.
A home is more of a residence. There is common space and staff and regular mealtimes. You share the patio.
This is the tale of two brothers.
Both are good and whole and right.
I watch one, and I think of the other.
I can’t help it. I can’t see it any other way.
I didn’t do anything differently. That’s what I want you to know.
I ate bananas when I was pregnant and I had uncomplicated deliveries and I loved them both the same.
Still, they are wildly different.
What am I trying to get at here? I don’t exactly know myself.
I was proud to see my oldest child walk through the auditorium in his khaki pants and his plaid shirt and his easy smile.
At the same time, I am proud of the son who goes to a special school and carefully takes his medicine at night and toasts his waffles in the morning.
In a culture determined to divide between spectators and stars, where does this boy land?
The boy who cannot whisper but bakes chocolate cake from scratch?
The boy who cannot comprehend the idea of a mortgage, or a lease, or renting an apartment?
I am constantly looking for ways to honor him, and I refuse to believe I am alone in this.
I refuse to believe I am the only one raising a child who does not fit the cultural norm or the academic structure or the expectations of society.
Jack is not an athlete.
He did not make the honor roll.
He never ran for Student Council.
He won’t take the SAT or go to the prom. He may never have the chance accept an award onstage.
Still, he is important.
He is whole, and right, and good.
I know this, but I cannot seem to shake the idea that the world does not quite grasp it.
After all, I used to think success meant following a certain trajectory: high school, college, career, marriage, family.
But I have this boy now and his dreams are like so many twinkling lights scattered across a purple sky. They are elusive and luminous and bright and difficult. He cannot quite hold them in the palm of his hand.
But they are real to him. That’s the thing.
He wants to be a record producer and maybe live in California.
He wants to learn how to use an immersion blender.
He wants to live an ordinary life.
I cannot see one and not the other.
I worry one will have a hard time making friends in college.
I worry the other won’t make a friend at all.
I am scared one will move away to the big city of Philadelphia and never come back.
I am scared the other may never leave home.
How do we make room for every learner, dreamer, planner, student?
I mean, we have awards for the most valuable player and good sportsmanship and good grades.
What about him? I want to ask.
What about the boy with the lifelong diagnosis?
Where is his award for simply walking out the door in the face of crushing anxiety?
Where is the trophy for keeping still in church and looking people in the eye and and attempting to read at grade level?
What about us? I want to shout.
What about those of us who raise the quirky, the complicated, the misunderstood, the unseen?
We did everything that was asked.
We went to the meetings.
We sat at the table and listened to reports and asked for more speech therapy and compromised when it came to inclusion.
We broke and we healed and we broke again.
And then we went to work.
We sat at the dinner table and tried to get them to eat and we told social stories until we were blue in the face.
We celebrated the small milestones while our peers raced ahead into the stratosphere of driver’s ed and diplomas.
We are the mother of many dragons.
We are as committed to our joy as we are our fear.
We have lived parenthood one moment at a time—searching for the meaning and the purpose and the future of a diagnosed child.
For me, for now, this is the tale of two brothers who will live a life of wonder, and delight, and joy, each in their own way.
Every once while, they blur the lines between spectator and star.
Jack, this cake is amazing.
Yes. For I made it. For you. For your award.