Down Syndrome

HELP!!!
what?
Help me, MOM!!!
what is it?
I need your HELP!!!
I’m coming!
EMERGENCEEEE!!!
WHAT? What? What’s wrong?
My eyes.
You hurt your eyes?
No, the sun is too bright: please close my shades.

Glimmers. Everywhere I turn these days, I keep hearing and reading about glimmers: those little experiences that bring you a sense of calm and peace. Small moments that turn a plain day or even a bad one into feelings of contentment.

Charlie, my 32-year old son with Down syndrome (DS), has just bamboozled me and sent me into a panic, racing up the steep, second-floor stairs, my chronic caregiver stress hormones rising exponentially. Truthfully, the art of bamboozling should not be a glimmer.

But it is.

As my heart rate slows, and I eye his one-sided smirk silently acknowledging that he knew all along what he was doing, the comedy of my life melts all sensations of stress and anxiety. My love for him fills me. I breathe in the fact that I am so lucky to have this man in my life.

Of course that is not what most people would think. In fact, parents of newborns often hear from the medical community, their friends and family members that their baby with DS will be a lifelong burden. I heard it three decades ago. And I still see people look at me sorrowfully, nod their heads and gasp: Oh dear, your child is going to live with you for the rest of your life!

And that thought pattern needs to stop. That attitude is outdated and only does a disservice to our whole society. The reality is that anyone can be or become a burden. Especially as we age.

But here’s what not everyone can be: a glimmer.

But Charlie can.

And lucky for us living in this not-so-empty nest, he is our daily dose of glimmers. I wish you could experience them as we do every day: the comments, the questions, the hugs, the back pats, the honest gratitude and unwavering love.

Big DooDoo (aka Dad), I love you.
Mom, let’s dance.
Percy (our family golden), you are my best friend.
Where’s my little sister? I need chocolate milk.
Hey, why you got to be so old?
Where’s Will? I miss him.
Thanks for my new pjs. They’re warm!
Let’s bake cookies.
Hurry up! Why you so slow?
Big DooDoo, buy more ice cream.
Mom, one more hug goodnight. And how bout a snack?

Clearly, my empty nest is different to one without a disabled individual living in it. My husband and I are not able to be as flexible. We do struggle to find alone time, and there are additional stressors: medical appointments, logistics, basic daily caregiving. And also true, I do occasionally pine for the quietude often found in an empty nest home.

But then Charlie suddenly pops in and provides a glimmer in my life: a moment of connection, reflection, humor, sass and love, bringing me feelings of peace and gratitude. And, therefore, one cannot tell me that growing old without glimmers is a better option. I simply don’t believe it.

I would take Charlie any day. For any day of my life. For my whole life.

My daughter is 15 years old and has Down Syndrome. I purchased her an iPhone a few months ago but soon realized I was unable to place pictures of her contacts in the contact listing area. She has to select a name in the contact listing area, which then goes to the area/page with the individual's pictures and phone numbers to see if that is the person she wanted to call. If not, she has to repeat this process until the she fines the person she wanted to call. I checked with Apple, and they informed me that individual pictures cannot be added to the contact listing area- the listing that appears when you first go to your contact list. Therefore, I am writing to see what cell phone other parents have gotten for their Down syndrome children with hopes of finding a phone that would work better for my daughter. Thanks Pat

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