Mardra, who will soon be launching a fabulous book is today's Guest Blogger. She talks about her son, Marcus, who is a young man now. She does much to allay many of my fears as the mum of a young child with Down's Syndrome.
“What are you going to do when he grows
up?” That’s the questions posed to you for the last twenty years. And though 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 sat in the bathroom with
your best friend on the phone, “Well, this is it.” 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.
And 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.
-
Mardra Sikora
-
Mardrasikora.com
