In honor of Down Syndrome Awareness month I am sharing an absolutely beautiful post written by my friend Valle Dwight.
By Valle Dwight
I think it's serendipitous that my second son's birthday is so close to Mother's Day. When Aidan arrived, I had already been a mother for more than three years. My first son, Timmy, a strongwilled, inquisitive boy, had taught my husband, Phil, and me many things like how to survive on four hours' sleep, the best ways to navigate through a tantrum, and how to hide vegetables in chili. But I don't think I came face to face with the true range of what motherhood means to me until Aidan entered our lives 18 months ago.
It was the first day of spring when Phil and I checked into the hospital. Shortly thereafter, Aidan came into the world looking very much like his brother, howling, arms and legs flailing, a mop of wild red hair matted to his head. But when the midwife handed him to me, I looked right into his tiny face and stopped for just one instant. Hmmm, I remember thinking, his eyes look a little strange. I quickly rejected that thought no, everything's fine and turned to Phil. We reveled in the afterglow of what had been an easy birth, and talked about how lucky we were. We were filled with gratitude for the beautiful family we had created, and looked forward to getting home and starting our lives together.
Then the nurse arrived to tell us that she needed to send the baby to the nursery because he was a little cold and they wanted to warm him up. She took him away, and we began to call family and friends to share the good news about our 8-pound, 13-ounce newborn son. But when Aidan still hadn't been returned an hour later, I had a nagging feeling that something was wrong. I didn't want to ruin the moment or lend weight to my fears so I said nothing to Phil.
The midwife arrived. She told us that there was a possibility our baby had “chromosomal problems.” I refused to let it sink in. Oh, a chromosomal problem, I thought. I'm sure they can fix it. Although my mind hadn't registered her meaning, my body must have because a chill ran right to my neck. Phil was silent. Maybe one of us asked what she meant exactly. Maybe she spotted our look of obvious misunderstanding. So she spelled it out: “The nurse thinks he may have Down syndrome.”
From where I sit now, I can split my life in two. There's the time before we heard those words, and the time after. Before, we were probably like most people. We knew we were lucky. We were healthy. Our little boy, Timmy, was funny and strong and happy. We had jobs and a loving family. But until we were hit with those words, I don't think we had any idea how fragile that luck can be.
I knew nothing about Down syndrome, but I had lots of frightening preconceptions. My first thought, even as I nursed him in the hospital, was “How will he get a job?” My instinct right from the start was to hold him tightly against a world that seemed irreversibly changed.
I thought back on my pregnancy, which had been uneventful. Because I was over 35, my doctor had advised me to have an amniocentesis. So I'd made an appointment for the prenatal test that was to determine whether my baby had a chromosomal abnormality or spina bifida. I got as far as the ultrasound. Just before the doctor started the test, I changed my mind. I told the doctor I didn't want to risk a miscarriage.
“Well, your chance is one in one hundred that you'll have a baby with Down syndrome,” she said. “I've had ninety-nine other women in here this month and none of their babies had Down syndrome. You might be the one.”
I had been ambivalent about the amnio from the start. Driving to the appointment, I'd told Phil that I didn't want to terminate the pregnancy no matter what the amnio revealed, and he'd agreed. We'd planned to have a second child, and there was no going back.
“Even if the baby has Down syndrome,” I told the doctor, “I won't terminate the pregnancy, so what difference does it make?”
“Well, that's what everyone says,” she told me. “But they change their minds when they get the test results.”
I was offended by her flip attitude toward my baby. “Well, I'm not changing mine.” And we left, clutching the ultrasound photos of our beautiful baby.
Now here I was five months later, holding my blue-eyed baby who suddenly seemed so distant. We took Aidan home and waited a week for the blood test that would tell us for certain whether the doctors' suspicions were correct. Meanwhile, we stared at him, wondering. We compared him to pictures of Timmy as a baby. And we went back and forth with each other: Did he look the same or different? And were the differences we saw a result of Down syndrome, or because he was a different person? I kept thinking about the moment he was born, when I'd noticed something odd about his eyes. But other times I'd reassure myself that he was no different from Timmy, that everything would be fine. It was an agonizing period.
By the time the results were in, I thought I'd resigned myself to the worst. But the news sent me reeling. I cried for two days. I was grieving for the baby we had expected, the only one we thought we were prepared for.
When the tears dried, I began the long learning process that will continue, I imagine, for the rest of my life. Having resolved to find out everything I could, I went online, I read books, I talked to people. I was surprised to discover that everyone in the world, it seemed, was either related to, went to school with, or grew up next door to someone with Down syndrome. Everyone but me. I discovered an Internet support group for parents, and at the urging of one of them, I posted a message announcing Aidan's birth. The fact that he had Down syndrome was understood. These parents wanted to know the truly important things, like our baby's height, weight, and hair color, and their interest put things into perspective for me.
Within days we had received more than 50 congratulatory notes not one “I'm sorry” among them. Our spirits soared. Friends and family had been very supportive, but, let's face it, they knew as much about Down syndrome as we had. And they were all a little sad, too. But these other parents weren't sad at all. They felt that their children were a great gift, Down syndrome or no.
As I pored over the books and talked with these other parents, I found the factual side of Down syndrome fairly easy to piece together. Also called Trisomy 21, it is caused when a person is born with three of the 21st chromosome rather than the usual two. This extra chromosome, and all its associated genes, alters the development of the body and brain. What this would mean for Aidan specifically would be hard to say, but he would be developmentally delayed to some degree (most people with Down syndrome fall in the moderate to mildly mentally retarded range) and would have low muscle tone. This would make it tougher for him to crawl, walk, and talk. The list of the other potential problems was daunting: heart defects, hearing loss, vision problems, small airways making children prone to upper respiratory infections, and on and on.
In fact, it seemed that we spent the first few months of Aidan's life in the offices of endless medical specialists, most with titles longer than our baby's tiny body. By his first birthday, Aidan had seen a pediatric cardiologist, pulmonologist, ophthalmologist, audiologist, and an orthopedist, to name a few.
Of course, there was nothing in those reference books that could fully explain the other side of the story the ups and downs of raising a child with Down syndrome in our society. That's what we've been learning from Aidan himself, and it's been a lesson filled with wonder. Aidan's life so far has been more complicated than Timmy's was. There are more ongoing appointments he has physical therapy, a play group, and a teacher once a week. There have been challenging days and frustrating moments as we've all struggled to learn about each other.
But we've come to recognize that we've had trying times with Timmy, too they've just been over different issues. Timmy never slept. Aidan goes to bed a 7:30 p.m. and wakes up laughing. Timmy threw tantrums to beat the band; Aidan definitely knows what he wants, but he's generally much less stubborn. We're learning, as all parents discover with the birth of their second child, that each child presents a unique set of challenges.
Aidan is actually more like other kids than he is different. He will learn to walk, talk, read, sing, and dance (you should see him rock to “Itsy-Bitsy Spider”), although he will have to work harder than most kids to reach those milestones. And we will have to slow down and allow him the extra time. Beyond that, he will have skills, talents, and quirks all his own. He already does. He scoots around the house using his bottom, two hands, and one foot faster than any crawler I've seen. He can find his Barney doll no matter how well we've hidden it. And he's already using sign language, predating his eventual use of words.
When Aidan was newly born, all I could think about when I looked at him was “Down syndrome.” But now I see that the syndrome is just a small part of who he is and what he will become. Aidan has shown us that contrary to stereotypes, kids with Down syndrome aren't always sweet angels. When he does get angry, he can throw a tantrum to rival his brother's. When he doesn't want to eat, he sweeps his vegetables off the table with a stubborn flourish. And he hustles away with a backward glance and devilish giggle when he knows he's put something in his mouth that he shouldn't. Like the rest of us, kids with Down syndrome have a range of personalities, moods, and temperaments.
The future for people with Down syndrome is brighter than it has ever been, which makes me hopeful for my son's adulthood. Early intervention, medical advances, inclusive schools that educate all kids together, and new therapies have meant that people with Down syndrome can live longer, achieve more, and contribute to their communities in meaningful ways. Most of them graduate from high school, many live independently, marry, and have jobs. So while I wondered on Aidan's first day of life how he would even find a job, now I dream about the possibilities. Will he love the theater the way his father does? Maybe he'll want to work at a newspaper, as so many generations of my family have. Perhaps he'll be wiser than his parents and find work that actually makes money.
It has been only a short time since Aidan came into our world. To a degree, we're still on an emotional roller coaster. We have days of unadulterated joy over our family and what Aidan brings to us. And more wistful days when we wish that life was simpler, though these come less and less often. Sometimes I get sad about the might-have-beens, especially on the days when Timmy makes plans about things he and Aidan will do together, and I wonder which of those dreams will come true. Many days I feel guilty and unsure as to whether we're doing enough for Aidan. Would he be better off if we could afford this program, those vitamins, or that new therapy? And sometime I get scared about what's down the road, especially when I think of the struggles he may face making friends in those horrible junior high years, or making his way in a culture that places such high value on convention and looks.
But as we head into year two of Aidan's life, I've long since realized that our luck did not run out the day he was born. Not at all. In many ways, our lives have been transformed. We have found loving support from people who used to be strangers. We look at the world differently and consider ourselves lucky to be able to. We have an appreciation for a slower pace, we take greater delight in each small step. And we have a newfound understanding of the preciousness of all people.
Valle Dwight is a writer and mom of two. She works for Whole Children, a recreational, social and enrichment program for children and teens of all ages.