October is Down Syndrome Awareness Month, a fabulous opportunity to celebrate Joey and all of his buddies who rock the extra chromosome. In their honor, I am reposting something I wrote just a year after his diagnosis. Enjoy…
On one wall of my house, I have a “photo collection” of each of my kids—you know, the ones with multiple pictures that the photography studios talk brainless fools devoted parents such as myself into buying. The ones of my boys are each from their one-year “photo shoot” (I hate that term. It sounds so vain and uppity, but what else do you call it?), and as I walked past them the other day I looked up and caught my breath.
I can see it, I thought. He looks different.
It was last June when my youngest, almost three months old at the time, was diagnosed with Down syndrome. Although Joey had been born three weeks early, spent a week in Children’s Hospital for a list of issues that came up after his birth, and been to several well-child visits, not one single person had ever suspected or mentioned the term Down syndrome—not even our pediatrician, who had sent us to the geneticist. She had simply asked us to get some blood tests run to “rule out any issues.” That was the moment where the carpet was pulled out from under us. I didn’t understand how the earth could keep spinning, how people could just keep going about their business. Didn’t they understand what had just happened to us?
The denial set in quickly, and my first act was to take the book that our very kind genetic counselor had handed us—the one with the cute little toddler with Down’s on the cover—and turn it face down. I couldn’t look at that little boy’s face and see my child.
We went home and told our parents, who were all there waiting for us. We sat on the couch and cried, and in desperation I looked up to the ceiling. As my eyes turned skyward, they passed over our most recent family photos, taken before Joey was born. I looked at them and tried to imagine us, 10 years down the road, our little family… with this child that stood out posed right in the middle. I couldn’t make it make sense.
Please don’t think that I am so shallow that my main concern was how my baby was going to look. It wasn’t that. It was what it represented. He would be different. He would stand out. He would be misunderstood. It would be hard. The family picture I thought we would take was not the portrait that would be hanging on my wall. Although nothing had changed, life was suddenly very different. The photo on the book, the photos on our wall—they were just physical reminders of an intangible issue tugging at my heart.
So we began to navigate this new life, and I went through weeks of denial, then months of anger. But never once did I doubt my love for my sweet baby boy. In fact, I learned that there is such a sweet delight in working so hard toward little milestones, like banging two toys together or turning the page of a board book. He brings me joy in ways I didn’t know existed. And when I look at him, I don’t see a-child-with-Down-syndrome—I see Joey.
And then the other day, I saw those pictures. And I stopped and looked again. I see it, I thought, as I looked at the pictures of my boys side-by-side. The set of his eyes, the flatness to the back of his head, the way he carries himself… He just looks different.
And then… I looked past the pictures of Joey, past the pictures of my older son Matt, and over to the picture collage of my daughter Grace. And as I gazed back and forth between the photos of my two oldest children, I laughed out loud. Their eyes are different from each other, their hair is different, their smiles, the way they carry themselves, the way their personalities shine through in the snapshots. They’re different. In fact, I am constantly amazed that all three of my children come from the same combination of DNA, and yet they are all so completely… one-of-a-kind.
So let me tell you a little bit about my family, this zoo that I have. There’s Grace, who is beautiful and loves to dance and play princesses and have tea parties… and practice her “ninja moves” and play superheroes with her brother. She would wear a ball gown to school every day if I let her, and it would come back home covered in paint and crayons because she loves to craft more than just about anything. She gets that from her grandmother (my mother-in-law), definitely not from me. There’s Matt, the toughest sweetheart you’ll ever find. He is constantly being a superhero or Transformer or Power Ranger of some sort and loves to play boxing and wrestling and all of those super-tough boy things that I can’t say I completely understand—and he will break down and cry if you give him a stern look. So tough, yet so tender. And then there’s my sweet baby Joey, who absolutely loves to make people smile. He draws people to himself—complete strangers stop us constantly to dote on him because he is just that lovable. He adores his older siblings and is determined to be in the same room with them at all times. He loves to wrestle with his brother and sing with his sister. He throws everything he can get his hands on—except cars, which he loves to push back and forth while making “vroom” noises. Oh, and did I mention that he has Down syndrome?
You put them all together, throw in Mommy and Daddy, and I think we make a pretty sweet-looking family photo, don’t you?
Our family at the time of writing (2011)
Our family now (2015)
Thank God they are all so different from each other. It makes our lives full.