Taken almost directly from my journal the day before Marcus’ graduation, two years ago…
“What are you going to do when he grows up?”
That’s the question posed to you for the last twenty 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. And 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 5 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, 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?
Well here comes graduation day,
barreling down like you never knew it was coming. The 2 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 9 months to prepare, you had exactly 2 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 laugh every day.
You’ll know you are loved.
You’ll wonder what you were so worried about.
Last year I shared these words on the Downs Side Up Blog. She has so many lovely guests and resources, it’s worth a long look. Last month I shared these words with other parents at the VODEC advocacy parent’s meeting. Thank you for coming by, if you’d like emailed updates, not too often, join the club here. Feel free to leave a note you were here and be sure to come back around. 🙂
OMGosh! the public bathroom!!! YEP! (nodding my head)
Loved this so, so much.
Thank you for your wonderful writing! I am new to all of this…as I have Mary in my life full time now for the past 5 months. Mary is mmy sister in law and is 48 years old with Down’s Syndrome. My husband, (Mary’s brother) died three years ago of pancreatic cancer at the age of 55. I promised my mother in law I would help with Mary if anything every happened to my mother in law…and that time is now upon us! I am still trying to figure out the maze of programs or activities to try and get Mary involved in…but all of it has been really difficult. Mary is such a wonderful young woman that has been sheltered from the world all her life. I am hoping to give her the life that she deserves to be living…and would so appreciate any feedback from you…Keep this wonderful blog going…I may have just found my life line in this really complicated process! Thanks to you! Patty
The “maze” can be overly complicated, I agree.
I hear a lot from caregivers that the person they cared for was sheltered before and now perhaps even blooms with new opportunities. I think this is especially true of Mary’s generation; we love and care for the first generation of integrated adults you know, and it’s a challenge teaching the world 🙂
I hope it gives you both a fresh start and new way to look at life.
Are you in the UK or the US? You can reach me also on twitter and Facebook, if you’re in those spots. I’d love to introduce you to folks who can help you and Mary connect in the community.
Timely post, with graduations occurring. It’s wonderful that you thought to share this again for those just now approaching this point. And hi!
Yes – I feel like it sums up kind of all of the reason I am “here” (on line and sharing) – best to revisit that on occasion. 🙂
And Hi to you! Thank you for reading and commenting.
Thank you for sharing this about your child! Gives me hope to know the future I may possibly go through, and it doesn’t sound too scary after all! Great job to yourself for being a wonderful mom and for advocating about Down Syndrome!
Thank you for your comment. For me, none of that worry served a purpose. I hope it helps others to step back as well. Thank you.