I'll never forget the feeling of building rage inside my heart. It felt like horror at first, then became a slow burn in my stomach even as my body began to shiver. In those few moments, I completely understood how quickly all reason can dissipate into a crisp October night, and how someone could lash out without a thought of consequence.
Charlie was five months old, and The Husband had undertaken his first annual Halloween Garage of Doom. He'd spent hours working on a crank ghost, reportedly in response to an off-hand comment I made that he "couldn't make that." (Why do I contest that account? Because ever since, I have repeatedly said he is incapable of booking a trip to Italy, and to date he has been unmotivated by this challenge.)
Charlie meets the neighbors
As I cradled my tiny, sleeping pumpkin in his own pumpkin costume, I wandered along the driveway, talking with neighbors, lavishing praise on kids' costumes and meeting people who lived right around the corner for more than a year. That night was as close to our coming out party as any other event, since the first three months of Charlie's life were spent tethered to wires in the NICU or a heart monitor at home. An older neighbor staggered up to me and began to speak. Looking back, I knew he was drunk by the way his words slurred and his body swayed. But at the time, I focused on struggling to hear him, as spooky music blared, lights flashed haphazardly and electronic vampires and goblins moaned and shrieked.
Looking back, it was appropriate ambience.
'Give him drugs'
I wasn't entirely sure I'd heard him correctly when he looked down at Charlie and said, "Well, now, you know modern medicine has just come real far. I mean, they got medications you can give him now, right?"
My blank face must have implied I hadn't heard him at all.
"Your boy," he said, pointing. "They're gonna be able to give him drugs, right?"
It was the first time I had faced a lack of education compounded by a complete compassion deficiency.
"He is going to be just fine," I said firmly. The shaking had started. "He is going to be just fine!" I shouted it the second time, maybe to make sure he heard me over the Garage of Doom, maybe because letting energy out through my lungs might have kept me from pouring energy into wrapping my hands around his neck.
He said something else. I said something else. I'll never remember either remark. As quickly as I could, I wheeled around and flew into the house with Charlie in my arms. I was incredulous, and rattled and so filled with a heavy, pounding sadness.
This is what we'll face, I thought. This is the beginning of meeting people like that.
Just talk to me
It's true that many people don't know much about Down syndrome, and I was right there with them when we learned our unborn son was diagnosed with the most common chromosomal abnormality. We've learned a lot since that day, but some of the most useful lessons have come through honest conversation.
When Charlie was first born, I went a bit overboard, sharing information with a list of friends and family through email. Some responded warmly, and others never replied. I don't know what spurred me to over-share (aside from that annoying lifelong habit I've had). Perhaps I was learning so much, I desperately wanted others to learn with me. To understand. And then to not care. To not look at us any differently.
Today, I find few people ask questions about a condition I'm sure they know very little. I don't know how to help people feel comfortable asking questions, but I have a better sense of what I want people to understand.
More alike than different
Charlie is a child.
He is a little boy with a big imagination, a grating whine and a mischievous laugh that erupts as he tosses his little blonde head back in the air and howls at the moon. His Dad taught him that. It has nothing to do with Down syndrome and everything to do with being sweetly and innocently goofy.
You may hear the mantra that children with Down syndrome are "more alike than different." It's a simple statement that is so simply true.
If you know a child, if you've experienced a tantrum, a tickling session or the warmth of a tiny hand tucking into yours, then you know Charlie.
Charlie will refuse to eat something simply because he doesn't like the way it looked at him (yes, at him — at least that's how it feels when you're on the receiving end of rejected chicken nuggets).
Charlie will shove his sister out of the way to reach the one toy that he had previously excommunicated from the other 4,678,201 toys closest to him.
Charlie will avoid eye contact and snuggle deeper into your side when he hears the words, "Time to go night-night."
He will flash a huge, toothy grin and cackle as his way of saying, "Yes. That is what I want, you buffoon," rather than nudge his fist up and down to sign a simple "yes."
My precious son will turn purple with rage as we roll past the Gerber snack lineup in Target without stopping to sample... and then instantly morph into an angelic, pint-sized politician running for Congress who waves like a sultan to the attractive associate zipping by us. He is a child. Sweet when he wants to be, stubborn by nature and the science of inherited genes, able to spot a cookie from a mile's distance and discern the word "snack" from a paragraph of spoken Greek literature.
So, I guess all this is my way of saying, I know more about Down syndrome than I ever thought I'd need to know. But when it comes right down to it, understanding and knowing Charlie has little to do with knowing anything about Down syndrome and everything to do with getting to know a beautiful little boy.
PS — if you own a monkey, you're in.