When My Son With Down Syndrome Lifted Me Out of ‘Broken’ Thinking
Oh, you do know how to drag me out of the depths, young son.
Just yesterday I was briefly chucked back into that hateful Dark Place. The one I haven’t been in ages because it’s just been us and Life at the Speed of You and mostly smooth sailing. Our optimism and our “normal” run this show, but every once in awhile it hits me like that anvil falling on Wile E. Coyote’s head, and I’m shocked into submission. Nothing angers me more. There you sit, being the amazing kid you are and something threatens to dull your shine.
Not on my watch, buddy.
Like a whirlpool had grabbed my ankles, I got sucked into that place, the one where I’m still angry at outsiders who don’t show you optimism but instead rank you and rate you and chart you and place their societal limitations on you. I got there because every time I let my guard down their attitudes seep into my thinking. I cannot stop it because it always blindsides me.
And nothing angers me more.
I saw you unable to do something that chronologically by age, for all intents and purposes, you should be able to do. But you couldn’t do it. And I counted… well, I counted you. I gave you a number. Like a prisoner, a criminal behind bars, I mentally took your progress and your actuality from you and replaced them with a number. A “developmental age” number. Because that’s what happens when they come in. They break me.
Because as it’s always been, when it’s just you and me and your daddy, we are on the move. We progress, and we see what you can do and then we look for what’s next — only what’s next — not what’s on a chart, a book, a guide, a notepad. We identify what you can do now and choose what we should work on next. We stack it up, like a castle made of that wet sticky sand that endures. We make sure you’re ready for “next,” and when you are we know, and we do and we move.
But damn it if I didn’t let them in last night. I let them break me, and in retrospect I’m pretty seriously disgusted with myself. But mostly I’m sorry. Because I owe you more.
But here’s the rub — I’m not sure those people who skulk into my brain and yank away my pride in your achievements when I least expect it actually know the most important thing they should know, which is this: you are dealing with a child whose family has great hopes and dreams for him to soar. These are not rose-colored glasses we wear. We don’t care about your charts because this is our reality. Our son has the same right to huge expectations as does everyone else.
We don’t see or register your numbers, your rankings and ratings because we progress at the pace of our son. Still, we come to you to ensure he has support because the System says we should. But real support lifts. Real support elevates. Real support nurtures.
Real support does not break. And when I think of the “support” you people provide, I feel shards. I envision rickety ladders lashed together across a constantly moving icefall, in a landscape above meaningful oxygen. Your version of support suffocates. It threatens. Do better. You owe it to everyone you serve.
And get out of my head already.
When you rank and you subsume and you marginalize and you pity, you break us. Yet here, you will have seen that we don’t need you to break us because some days we actually are broken in spite of you. Without warning, we sometimes break ourselves and we have to rebuild again and again. Our lives behind closed doors. You don’t see, but I’ve just revealed it because it is everything.
Sometimes we break. Then we come to you once we’re strong again but you go and dismiss us with accusations of “rose-colored glasses” and “obstructive” and “in denial.” You wind up and swing your scythe of negativity and lop us off at the ankles every time.
We are already broken and broken and broken yet still glued back together. Don’t you realize this?
Hang right on.
Here, in reality, in the day to day, like fractured bones, broken spirits heal. They heal when you pick up the pieces, and you compress all the fears, and the gargantuan efforts, and the extra support back into itself. Cast it in a bear hug and squeeze until the broken thing knits itself back together. Different, yes. Healed, yes. Weakened?
Not on your life.
Because once again — as it is always with our stellar boy — every time I get to the Dark Place, surrounded by that pile of shards that is my heart, he goes and blows my mind the very next day. It is pure magic — the empathy, the “knowing,” the joy by osmosis. The mom-and-her-son thing. I thought it would be amazing to have a son, but let me tell you, this is like that thought on a roller coaster. Screamy delight. Leave your stomach at the top of the hill because it’s going to be a big drop and a raucous ride.
Just gotta ride it. Let your throat dry up and your hair fly and ride baby, ride.
So to my best boy, wah hey, bang! out of the Dark Place we arose today, didn’t we, kid? You hoiked me back up with such a rapid succession of… well… success. A fearless unaided slide. Tons of walking and exploring on still wobbly legs, pointing the way ahead and demanding I follow. And I follow. Always, I follow.
Your sudden fearless engagement with zoo animals where last visit shouting and hesitant was the way forward. And the biggest surprise of the day that which was your first stress free endeavor on a “real” potty. This is parenthood. This is bliss. This parenthood has no label, no timeline. This is pride in progress.
This is how you are indeed just the same as everyone else.
I’m entirely on the other side of that Dark Place and what put me there was you.
You. The iron in my veins that drives me forward, giving me strength.
You. The roaring lion, pride of my Pride.
You. My every tomorrow.
When the bough breaks the cradle will fall, and down will come numbers.
Because you always stand tall.
Follow this journey on Down in Front.
The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.