Today I came back to life. At last, I can breathe again. Admittedly, I don't think too far into the future. But even the future, I'm now certain, will be okay.
Slowly, the curse is beginning to wear off. I'm finally able to go long stretches without reliving the millisecond when my life detonated. Life is funny: it takes about as long to adjust to a new reality as it does to break in a new pair of shoes. I wouldn't have guessed that.
Our first full day at home, and our house is filled with guests. Which is a very good thing. They take care of the meals, the cleanup. They offer reassurance and love. Smiles come easier today – for the first time since the birth, I'm not at war with my face, constantly fending off little crying attacks. Not as often, anyway. Things are starting to get back to normal. The new normal. I'm still scared, but I start to believe that I may actually be able to do this.
Mom and Ozzie pass their final checkups. We are fit to be released. As we pack our bags, we mentally prepare to abandon the safety of our room and step into the unknown. What does the world look like from the other side? How did we get here, and how do we get back home?
As the nurse pushes my wife's wheelchair to the exit, she is silently stalked by a cluster of "It's a boy!" balloons. Everyone we pass turns to look at our bundle of joy. It feels like we are being paraded in front of the big stone heads on Easter Island – no side door, no escape hatch.
Look at me! Look at me! Look at me!
We load up in record time. Throw everything in the back! Strap him in! Let's move!
Today we are visited by a woman from the genetics lab. She carries the results of Ozzie's genetic test: trisomy 21. Down syndrome. No denying this (not that we ever did), but at least we know for sure. Deep inside his cells, he carries just a touch too much mom or dad. But he is physically strong and healthy. We count our blessings - many children with Down syndrome have heart or intestinal defects, or muscular weakness that makes nursing difficult or impossible. So he did manage to dodge a few bullets.
Forgive me, dear readers. Until now, I've focused solely on the negative points of the "surprise" Down syndrome experience. But it's not all bad. For instance, the swag. Free stuff. We get not one, not two, but three different books about Down syndrome. Actually, we score two copies of one of them, so that's four books total. Kick ass! Unfortunately, neither one of us really feels like reading very much. We thumb through one book and see photos of Down syndrome children from all walks of life. We see lots of smiling faces, and we see Down syndrome children who look very much like their brothers and sisters. So maybe Ozzie will look like us after all.
Other benefits include extra attention from all of the nurses, some counseling sessions with two different social workers, and... and... uhh....
Two days after the birth, I go home to pick up a few things. And at last I am completely alone. I shouldn't stay away long, so I have to choose between a nap and a shower. I choose a shower. A really hot one. I crank up Led Zeppelin and step inside.
Suddenly my soul splits a seam. The air rushes out, and I convulse in waves of sadness. The noises I make are loud and unfamiliar. I don't recognize these sobs as my own - they are more animal than human. I stand, head down, and let the water wash over me. Wash away the pain.
And then it's over. I shut off the water. I can't even remember if I ever lathered up.
Although that's a perfectly natural question, it can be a bit tricky for parents of a child with Down syndrome. Hmm...let me think. Two words immediately come to mind: "Asian" and "elf." Especially with his little elf hat and his 4 lb., 11 oz frame. He looks like a cute little elf from China. I'm not sure if that's offensive or not. It probably is. Anyway, the point I'm trying to make is that, right now, he doesn't look like our daughter did, and he doesn't look like either of us. And having a baby that looks like you (or at least the mailman) is something that most parents take for granted. We don't anymore.
To be honest, this question didn't bother me at all. But it visibly affected my wife. I guess everyone is different.
Friends and family rapidly pass the word. We catch our breath. And phone calls start coming in. Phone calls that should not be ignored. What will people say to us? As difficult as this is for us, I know it's equally difficult for the voices on the other end of the phone. Well, maybe not "equally," but fairly difficult.
So, want to know what they say? They all say the same thing: "Congratulations." A word that seems deliciously weird in the current context. On the one hand, damn right we should be congratulated! On the other hand, that word doesn't seem to pair with the feelings I have inside. It's like dropping an olive into a glass of Guinness. A strange mix.
Strange or not, it is comforting to hear that word, as there are so many other words to choose from that could be vastly inappropriate. And it's my understanding that many people in our situation have heard them.
Immediately after delivery we are whisked to a luxurious shared room. A few feet away, on the other side of a curtain, we listen to a woman and her husband preparing to have a c-section to deliver twins. They are just moments away from the happiest day of their lives. It feels like we are the dark side of a nighmarish, living yin-yang. We keep things to a low murmur as we try to make sense of the new world. I'm just a simple caveman, I know nothing of your "airplanes" and your "Down syndrome."
Phone calls need to be made. But still, the words won't come. And we need more privacy. Somehow, we manage to convey the message to my wife's mom in a brief, whispered phone call. I send a flurry of text messages to my coworkers and friends (my thumbs still have their voices). I ignore incoming calls from my family, trying desperately to postpone the inevitable.
We finally move to a private room, and my sister calls. And for the very first time, I speak the words. The baton is passed. She carries it from there, sparing me the agony of reliving my "tiny moment" with each member of my family. So that is that.
Our lives are filled with tiny moments. Graduations, marriages, deaths, all burned forever into our brains. But yesterday, I experienced a tiny moment so large it eclipsed every other in my memory. And it began with a nurse's words:
"I want to point out some interesting features on your baby."
Spoken as calmly as you please. No sign of worry, no exclamation point. The eyelid creases. The palm prints. The unmistakable face of a baby with Down syndrome.
"Do you see what I'm seeing?"
"Do you understand?"
I did. Yes, yes, I nodded. And now I had to walk across the room and take a seat beside my wife, smiling through the rest of her c-section (the smiling part is a lie, but I'm trying to give her some credit). I looked into the eyes of a woman whose world was about to turn upside down. A woman who was pleading to see her baby for the very first time. And I had no words to offer. No words would come.
"Can I see him?"
"Bring him over, please."
And so the nurse came...
She began with the good points, just like a realtor. Strong heartbeat. Good color. Waterfront view. And then she showed my wife the signs. The structural problems. And I watched the woman I love break like a piece of glass hit by a stone.
Such a tiny moment...
I have no doubt that this change will be a blessing. I know it, my wife knows it, our families know it. But that doesn't make it easy. I don't think the word "easy" will be in our vocabulary for awhile.
Daniel Niblock is a graphic artist and animator who lives in Durham, North Carolina. On July 14, 2008, he became the proud father of his second child: Ozzie, a 4 lb., 11 oz. baby boy. Ozzie has Down syndrome. This blog chronicles the bewildering experience of stepping into a topsy-turvy new world. It began as a place where family and friends could come to read words that were too difficult to speak aloud. It has transformed into a place where people can read about discovery, strength and love. Hopefully these collected reflections can help others find the way out of the darkness and into the light.