Hello again, everyone. Somehow I missed a month - sorry about that. Since my last post, Ozzie has started interacting with us. He smiles a tremendously large smile, he grabs at his toys, he pulls his sister's hair. He wants to laugh, but he doesn't quite know how. All he can muster is a half-chuckle. He is absolutely adorable, says everyone, and I know they aren't lying.
Ozzie's big sister is in smitten with him. She takes every chance she gets to snuggle with him and tell him she loves him. She "teaches" him things all day. I have honestly never seen a little girl love a baby as much as she loves Ozzie. We're talking Hallmark Channel levels of sappiness.
Ozzie loves to be held more than any baby I have ever seen. He never wants to be put down, which makes it difficult to accomplish anything in our home. But he's so huggable we don't care. He has begun therapy for a very minor issue - his neck and torso strength. His muscles are just a little bit weaker than normal babies', so we have to support his head a bit more than we should. He can hold his head up on his own, just not for extended periods. So a therapist has visited a few times to teach us a few simple exercises that will help him get more control. And he is already showing excellent results.
The whole Down Syndrome thing is becoming more of a non-issue every day. I don't constantly dwell on it anymore. The fear and darkness I experienced immediately after his birth has given way, replaced by the joy of having a baby boy in my life. There are many days when the words "Down Syndrome" are not spoken. That has to be a sign that we are entering calmer waters.
I think, in some ways, my mind has begun to slow down a bit. I'm not trying to map out Ozzie's entire future, because it's impossible and stressful and probably unhealthy. Whether this mental shift is a defense mechanism or the result of exhaustion is unclear to me, but it is relaxing.
I am left with only one true worry, but it's a big one. We still don't know what Ozzie's mental capacities will be. Everything we see every day seems to indicate that Ozzie will function at the high end of the spectrum. That's good, right? Of course it is. But in some ways, I think high intelligence could become a curse. A thought exercise:
I imagine a see-saw. On one side we place intelligence. On the other side, we place emotional health. As one goes up, the other goes down.
Imagine an intelligent DS child in a class of normal kids. Imagine that child feeling attracted to girls in the class - and knowing they aren't really available (I can think of many similar quandries, but that's the one that really cuts to the quick). Imagine the emotional struggles this could cause. Imagine the conversations a father must have with this child throughout the formative years. Imagine you are that father. I am.
Now imagine a DS child on the lower end of the intelligence spectrum. Although his world is radically different, I bet those particular emotional minefields aren't really as tough to navigate. Perhaps they can be avoided altogether. It's possible that this child is even happier than the intelligent DS kid. Is this a blessing, or a curse?
Maybe I'm selfish and horrible for even thinking such a thing, but that's what goes through my head a lot. Two possible roads lay ahead. I don't get to pick which one I go down. Both look bumpy and curvy and long. But I'm going to do my best to forget my troubles, put the top down, crank up the tunes and enjoy the scenery.
I think I'm irritating people because I'm not posting frequently enough. If you are one of those people, thanks for taking interest in my life.
So let's catch up.
Down Syndrome is slowly becoming woven, permanently, into my day-to-day existence. I have a heightened sense of awareness for a syndrome that I never really thought about in the past. Dina and I recently attended two functions for DS (that's the hip way to say it). The first was about three weeks ago – a meeting sponsored by the Triangle Down Syndrome Network (TDSN) especially for new parents of children with DS. We met at a church in Raleigh. About six other couples came, and we talked for an hour or two. We sat in a circle and went around the room as everyone shared their stories.
I had two revelations at this meeting. First, everyone else's stories were much more devastating than ours. Horrible health complications, hospital screw-ups, etc. It made me feel lucky (relatively speaking) for the first time in a long time – I would not trade my situation for any of theirs. The second was that having a "surprise" DS child is not so special after all. Almost everyone we met didn't know their child had DS until the birth. And that struck me as amazing, because many people have amnio tests that can pick up this disorder. Clearly the vast majority of people who knew the diagnosis before the birth took steps to ensure that they would never bring a DS child into the world. I found out later that more than 90 percent of DS fetuses are aborted. I'm not necessarily a pro-lifer, but damn, that ain't right.
I take comfort in reassuring myself that, if I had known, I would have been in the ten percent. Surely I would not have chosen the alternative. Surely. But would I? Dina and I have had intensely deep discussions since Ozzie's birth. We have confronted, head-on, issues that we had never thought about before he came along. Our entire world view has changed. So I can only imagine what kinds of things people talk about when they find out during pregnancy. I can't walk in their shoes, because I didn't have the opportunity. I do know that they endure a special kind of pain, a choice between a life they can't imagine and a quick press of the restart button. It's incredibly sad that such a vast majority of people hit the button.
Okay, enough of that.
The second DS function we attended was last weekend, also in Raleigh. The annual "Buddy Walk" fundraiser for the TDSN. It's the kind of thing I may have made a joke about as a teenager. I can assure you it's not a joke now.
It's hard to describe the feeling you get as you walk into an event like that and realize that it's YOU now. These people are YOU. They aren't THEM anymore, and they will never be THEM again. My three-year-old daughter peppered us with questions on the way there, in the way that three-year-olds always do.
"What will we do?" "Play, have fun, eat food."
"Will my friends be there?" "No, but lots of other kids will be there."
Is it at a park? "Yes."
Why are we going? "Uhhhh. Um. Uhhh... we just heard it was fun, sweetheart."
How do we even begin to talk about this to a three-year-old? So that's what was going through my head as we parked and waited alone for the trolley. And then it pulled up and a severely disabled DS child climbed down the steps. And I knew this would be a trial by fire.
But guess what? It really wasn't. We saw all sorts of DS children, some severely affected, some so mildly affected that you could pass them on the street and never pick up on it. But the DS children weren't the ones who caught my attention. The normal children did. The ones that filled the bouncy houses, the ones in line to have their faces painted, the ones who stood in line to get hotdogs. DS doesn't just affect the affected - DS children have brothers and sisters for whom this disorder is also a part of daily life.
It was at this function that I had my third revelation. DS, a club that no one ever asks to join, does not discriminate. You, or someone in your family, is tapped, and everyone in that family is handed a lifetime membership. Normal, everyday people, young and old - people you might never suspect - have been tapped. It's not fair, it's not the life anyone imagines, but it is reality. The Buddy Walk helped me see just how many people are members of this exclusive club.
So that's what's been going on for the past month. DS is an inescapable part of our lives. We don't sit around and discuss it all the time, we don't read DS books and watch DS DVDs and host DS group meetings and hang out with DS friends and bore our relatives with DS statistics – we don't obsess about DS the way people who really get into recycling obsess about a Coke bottle in the trash. DS is not our hobby. But DS is always in the background – in the quiet moments. Driving home from work, or sitting in my chair at night, having a glass of whiskey. I think DS thoughts. I try to wrap my mind around profound subjects. I think about Ozzie's future, my future, the trials that await us.
The joke's on me now. I'm trying my best to laugh WITH myself.
We've reached the two-month mark! Ozzie is beginning to fill out a bit, but he's still so tiny he looks like a three-week-old. The past several weeks have been uneventful. We have not had any additional doctor visits or any therapy sessions - having Ozzie has been just like having any other baby.
We have gradually started reading some of the books we were given in the hospital. I haven't sat down and read a complete book yet, but I have read chapters that looked interesting to me. I can read that stuff now without getting upset. About 90 percent of the pain is gone. The sadness I still have inside is focused on Ozzie's future, which, at this point, is unknown. I'm mostly saddened when I think of the questions I will have to answer some day. Questions for which I have no answers...yet. That's the hardest part about having a child with Down Syndrome.
With a typical child, you wonder about his future through a narrow lens: Will he be a good kid or a bad kid? (probably a good kid) Will he be a doctor or a teacher or a businessman? (probably not a doctor, but that's okay) Will he meet a wonderful girl and get married and give me grandchildren? (hopefully)
Down Syndrome has pulled the entire frame of reference out from under me. Will he be able to speak normally? (let's keep our fingers crossed - many parents use sign language) Will he be shunned by other children in the neighborhood? (please, please no) Will I be wiping his butt when he is ten years old? (I hope not, but I guess it won't be the end of the world) Will he ever live on his own? Have a girlfriend? Get married? Hold a job?
How does a child with Down Syndrome view the world? I have never seen a person with Down Syndrome in a movie, at least not that I can remember. With few exceptions, every story you have ever read and every TV show you have ever watched was populated exclusively with "regular" people. And why wouldn't they be? I've never even given it a second thought. But now I find myself trying to imagine how Ozzie will view his place in a world that in some respects has been built for everyone but him. It's the kind of thing that blows your mind.
Some of the books I have read say that after awhile, parents look at their child and don't see the Down Syndrome any more, they just see the person. That has not happened for me yet. I can't even imagine looking at Ozzie and not seeing it. But what has happened is that I see the Down Syndrome and it's okay. It's not soul-crushing, it doesn't make me angry. It really is okay.
We're a few weeks into our new life, and, aside from a home visit by a social worker, living with Ozzie has been remarkably unremarkable. Round-the-clock diapers, feedings, diapers, feedings, diapers, diapers and more diapers. Just like any new baby. I've actually been struggling to find something to write about, other than typical baby stuff. Maybe that's the lesson here – he's just a baby.
Although he is too small to be away from home for long, we have taken Ozzie on a few brief outings. People "ooh" and "ahh" and talk about how beautiful he is. Life is interesting that way – for a brief period after we are tossed into the world, strangers feel compelled to step up, check us out, and pay us a heartfelt complement. Even if life eventually kicks the crap out of us, we all start out on the right foot.
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.