The day before Marcus' graduation, this is the answer that came almost directly from my journal to the question I've heard since the day he was born: "What are you going to do when he grows up?"
That question has been posed to you for the last 20 years. And although you've given one answer or another, time after time, it still feels as if this moment has snuck up on you.
Remember the day you found out you were pregnant? You knew then that this child was going to be the rest of your life. It didn't scare you. Not like it should have. Youth is invincible.
Then when he was born and you tried to figure out what Down syndrome is and what it means, how to prepare you and him for the world and how to find support in the community. So you went to a support group for special needs children. That turned out to be kind of a mistake. You were still smitten with your beautiful boy when you walked into a room full of anger. Bitterness at the schools. Frustration with insurance and government red-tape. Fear filled you. Was this your future? Were you going to brim with rage?
Yes. At times you were. You fought and reasoned and tried to reason and fought with the public schools for his first five years of life. Good teachers, good opportunities turned against you. Sigh. But then you found a private school that nurtured him, really wanted the best for him. They were growing and learning too, that made the match better, stronger. Not mired in predispositions.
So you made it, made it through heart surgery, pneumonia, the H1 Virus. Soon enough he showed a passion for theatre, a love of music and performance and hotels. You love to explore new cities and he loves hotels.
Then, when he got obviously old enough that you could no longer take him to the ladies bathroom with you, you dreaded letting him go alone into the men's room in a strange city, strange airport, strange theater. Each time you wait, and wait and wait -- hoping he will wash his hands, that he can work his pants himself, that no one will harm him.
And yet, there are times he comes out to tell you "the man helped me." With the sink, with the paper towels, with the door. Never a concern on his face. Never a problem breathed. And you sigh. And thank God he has the bladder of a camel so you can plan for bathroom breaks hours apart and arrange for safe places or ways to find "family bathrooms." Which he hates, by the way, but you insist.
Other than the school to some extent, you've kept your family an island. You've worked and he's joined you. You've counted on his youth and innocence to protect you from... what? From the future?
And now, here comes graduation day, barreling down like you never knew it was coming. The two-minute warning bell and you're standing without your homework, without your research paper, without a map to class. Even when Marcus was born, with nine months to prepare, you had exactly two packs of blankets, a bassinette and some newborn pj.'s. You weren't really ready then either, but everything worked out. Tomorrow he is a "grown-up."
What are you going to do?
Well, I guess you'll do the same thing you did yesterday. Ask if he had breakfast and remind him to take his thyroid medicine. Drive him to work and smile when he comes back to the car humming a happy tune. Argue with him over which radio station to play in the car, and how loud. Look into the acting classes you heard about and keep trying to find a voice coach.
You'll try not to panic when you read about early onset Alzheimer's and you'll make sure he takes his vitamins and goes to his workouts at the gym.
You'll smile when he tells the frazzled server at the restaurant, "You're the best," and she stops for a minute, smiles, and says, "Thank you."
You'll know you are loved.
You'll wonder what you were so worried about.
Originally posted along with several updates since then on Grown Ups & Downs.
Our 2024 Coverage Needs You
It's Another Trump-Biden Showdown — And We Need Your Help
The Future Of Democracy Is At Stake
Our 2024 Coverage Needs You
Your Loyalty Means The World To Us
As Americans head to the polls in 2024, the very future of our country is at stake. At HuffPost, we believe that a free press is critical to creating well-informed voters. That's why our journalism is free for everyone, even though other newsrooms retreat behind expensive paywalls.
Our journalists will continue to cover the twists and turns during this historic presidential election. With your help, we'll bring you hard-hitting investigations, well-researched analysis and timely takes you can't find elsewhere. Reporting in this current political climate is a responsibility we do not take lightly, and we thank you for your support.
Contribute as little as $2 to keep our news free for all.
Can't afford to donate? Support HuffPost by creating a free account and log in while you read.
The 2024 election is heating up, and women's rights, health care, voting rights, and the very future of democracy are all at stake. Donald Trump will face Joe Biden in the most consequential vote of our time. And HuffPost will be there, covering every twist and turn. America's future hangs in the balance. Would you consider contributing to support our journalism and keep it free for all during this critical season?
HuffPost believes news should be accessible to everyone, regardless of their ability to pay for it. We rely on readers like you to help fund our work. Any contribution you can make — even as little as $2 — goes directly toward supporting the impactful journalism that we will continue to produce this year. Thank you for being part of our story.
Can't afford to donate? Support HuffPost by creating a free account and log in while you read.
It's official: Donald Trump will face Joe Biden this fall in the presidential election. As we face the most consequential presidential election of our time, HuffPost is committed to bringing you up-to-date, accurate news about the 2024 race. While other outlets have retreated behind paywalls, you can trust our news will stay free.
But we can't do it without your help. Reader funding is one of the key ways we support our newsroom. Would you consider making a donation to help fund our news during this critical time? Your contributions are vital to supporting a free press.
Contribute as little as $2 to keep our journalism free and accessible to all.
Can't afford to donate? Support HuffPost by creating a free account and log in while you read.
As Americans head to the polls in 2024, the very future of our country is at stake. At HuffPost, we believe that a free press is critical to creating well-informed voters. That's why our journalism is free for everyone, even though other newsrooms retreat behind expensive paywalls.
Our journalists will continue to cover the twists and turns during this historic presidential election. With your help, we'll bring you hard-hitting investigations, well-researched analysis and timely takes you can't find elsewhere. Reporting in this current political climate is a responsibility we do not take lightly, and we thank you for your support.
Contribute as little as $2 to keep our news free for all.
Can't afford to donate? Support HuffPost by creating a free account and log in while you read.
Dear HuffPost Reader
Thank you for your past contribution to HuffPost. We are sincerely grateful for readers like you who help us ensure that we can keep our journalism free for everyone.
The stakes are high this year, and our 2024 coverage could use continued support. Would you consider becoming a regular HuffPost contributor?
Dear HuffPost Reader
Thank you for your past contribution to HuffPost. We are sincerely grateful for readers like you who help us ensure that we can keep our journalism free for everyone.
The stakes are high this year, and our 2024 coverage could use continued support. If circumstances have changed since you last contributed, we hope you'll consider contributing to HuffPost once more.
Support HuffPostAlready contributed? Log in to hide these messages.