A group of women (100 in all) in the Down syndrome community has joined together to create a book of stories for parents who are expecting (or who have recently had) babies with Down syndrome. I just finished up my story about Sam, and I thought I’d post it here in case any of you are interested. 🙂 Chris wrote a great one for inclusion in the book, too. If he gives me the okay to post it, I will. In the meantime, here’s mine:
Looking back, I think the universe was trying to prepare me for Sam all along. Down syndrome was never something horrifying to me—more a mystery than anything else. And although I didn’t understand much about Down syndrome, I had compassion for people with it. There was a guy in my junior high and high school who, in retrospect, I think probably had DS—perhaps mosaic, since he didn’t show all the signs, and perhaps with a dose of something else thrown in, as he had some anger issues in addition to his obvious cognitive delay. He was in the special-ed class, but we would cross paths on campus, and he was often lurking near where I was. He had a crush on me, I think, and I’m pretty sure it’s because I was one of the few people who wasn’t nasty to him. He scared me a little, because of his temper, so I can’t say I befriended him, but I also wasn’t mean to him. If he spoke to me, I replied to him. And I guess that was enough, because he spent the better part of six years hanging out in my general vicinity whenever our paths crossed.
Years later, I was talking to a friend about children with Down syndrome, as my friend was interested in Reece’s Rainbow. And we talked about how, as odd as it sounds, we sort of felt like the universe (or God, if that’s your belief system) should give us babies with Down syndrome instead of giving them to people who didn’t want them, because we knew we would love any baby with all our hearts—disability didn’t matter to us.
That’s not to say I wanted to have a special-needs child—like anyone, I hoped for a “healthy” baby. It’s just that I knew if I had a child with special needs, I was capable of loving that child as fiercely as I would love any child, and I was up to the specific challenges that go along with having a special-needs child.
My husband, Chris, and I had our first son, Theo, when I was 34. Theo turned out to be a bit of a handful—he was very colicky and eventually was diagnosed with high-functioning autism, among other things. But in many ways, he’s a very typical little boy, and we love him dearly and decided to try for a second child. And when I was 37, we conceived our second baby.
It was a slightly harder pregnancy than my first—just a few more aches and pains, and it felt a little different. I loved feeling Theo move inside of me, but the first time I felt Sam move, I felt a little sick, and my first thought was, “Ugh, it’s like I’m growing an alien in there!” I was aghast at the thought and immediately reminded myself that this was my baby, who I had wanted so desperately! I brushed aside the nagging feeling of something being slightly “off,” and I soon grew to love the feeling of him moving inside of me, just as I had with Theo.
When I was seven months pregnant, I was at Target one day and picked up one of their “Target Picks” recommended books. It was Expecting Adam—a memoir about a woman who finds out her unborn son has Down syndrome, and she decides to continue her pregnancy despite a tremendous lack of support from her Harvard University colleagues and community. I mentioned to Chris, “I probably shouldn’t read a book like this while pregnant with my own son, but what the heck—it looks good, and it’s not as if our baby has Down syndrome.”
And then, when I was 37 weeks pregnant, I took Theo to the library in our new town to try to get a library card. I left without a library card due to a paperwork mixup, but I wasn’t sorry because I was absolutely furious. As we waited in line to get the card, the man in front of us was trying to settle an issue of overdue books. He was maybe in his thirties, and clearly he had Down syndrome. He was polite, but it was taking him a while to try to figure out the overdue books and fine. The librarian, a woman in her sixties, was unforgivably rude to him. She acted impatient as he tried to settle his fine, and she rolled her eyes at me as if to say, “Can’t he just leave already?” She was plainly disgusted with him, and I was appalled. This man, whoever he was, was obviously trying to be independent and handle his own library books, and she acted as if he wasn’t worth the time of day. I was furious…and still with no idea that my baby, who would be born just days later, was affected by the same chromosomal anomaly as this man.
On our way out of the library, I picked up a community-activity guide for Theo, but when we got home, I realized I had picked up a special-needs booklet. I laughed at my mistake when I showed my husband later and said, “I didn’t even know they had a booklet for special-needs activities. Guess we don’t need this!”
Two days later, I almost missed my 37-week OB appointment. Theo had, unbeknownst to me, turned on the dome light in my car the day before, and effectively killed the battery. My pregnancy had been mostly trouble-free, so I thought about just skipping the appointment. But when AAA arrived and jumpstarted my car in time for me to get to the appointment after all, I went.
Our medical group provides only two ultrasounds per pregnancy—one at around 8 weeks and one at 20 weeks. But for some reason, at this appointment that I nearly skipped, the doctor cheerfully announced that she felt like doing a quick ultrasound, just to ensure that the baby was head down. “We know he is, but let’s just check!” she said. And as it turns out, he wasn’t—he was breech. And what’s more, my amniotic fluid was low.
After a whirlwind couple of hours where the doctors debated performing a C-section right then, they decided I had enough amniotic fluid to continue the pregnancy, and they sent me on my way with strict instructions to return in two days for a fluid check and non-stress test (NST).
So Friday morning I was back, dutifully getting my fluid check and NST. The fluid looked okay, and the NST was fine. The ultrasound tech called in a doctor just to be certain, and he spent a very long time staring at my ultrasound and making notes and calculations. Endless minutes ticked by. He finally cleared his throat and said, “Interesting.”
“What?” I asked.
“Was your first child small?” he asked.
I laughed. “Hardly! He was born at 38 weeks, and he was already 8 pounds 3 ounces!”
The doctor looked at me and said, “Interesting. This baby is measuring very small. I estimate five pounds.”
But he said nothing more. And I thought nothing more about it, even when I Googled “low amniotic fluid” and saw that “chromosomal abnormality” was one cause. In fact, when Chris asked me what might cause low amniotic fluid, I laughed and said, “Chromosomal abnormality, apparently! But we don’t have that, so who knows.” I had declined all prenatal testing, since abortion would’ve never been a consideration for us anyway, but I just assumed that because my 20-week ultrasound had showed nothing amiss, our baby was developing typically.
Later that very night my water broke, so I went in for my C-section 16 days earlier than planned—at 37 weeks and 2 days gestation. The doctors on staff wanted to wait to perform my C-section until morning—both so they could get some rest and because I had eaten dinner and still had food in my stomach. But the baby had other plans. After two hours of labor (and still four hours before the planned C-section), I was hit with a monster contraction that wouldn’t end. I was near tears with the pain, and then suddenly alarms started going off, and people swarmed into the room.
“What’s happening?” I asked, terrified. Alarms everywhere. People everywhere, yelling at me to roll this way and that, turn over here and spread my legs there. An oxygen mask slapped on my face. I looked at the fetal monitor and saw that the baby’s beautiful heart rate of 150-ish had plummeted to 34. Yes, 34. And it wasn’t coming back up. Someone turned the monitor away from me as I began to sob, “Get him out! You need to get him out safely!”
The next thing I knew, we were racing down the hallway. “Code C in Labor and Delivery!” was being announced over the PA system. “Code C!”
“Is he okay? Will he be okay?” I kept asking. No one would answer. Finally, someone said, “That’s what we need to find out. We’re going to need to put you under full sedation for an emergency C-section.” I wept.
But when they slid me from my gurney onto the operating table, a little miracle happened. The fetal monitor started picking up¾that beautiful heartbeat was back! I wept in relief. They were able to do a standard C-section at that point, and within about 20 minutes, I heard the lusty cry of my newborn son and the doctor proclaim, “He’s a bald one!” And I wept as I heard “APGAR of 9.” He was safe. He was healthy.
And then the doctor attending the baby came over and bluntly announced, “I need to tell you this because you’re scheduled to have your tubes tied. I’m concerned about some issues of tone with the baby.”
“What? You mean jaundice?” I asked, thinking she meant skin tone.
“No,” she replied bluntly. “Muscle tone. Your baby shows the signs of Down syndrome. So I need to know whether you still want your tubes tied.”
Shock. Anger. This woman was acting as if my baby was somehow “broken,” and I’d want to keep my tubes intact to try again for another “non-broken” baby. What did she mean: “Whoops, this one’s no good! Want to try again for another?” My protective instinct came out in full force, and I said icily, “Yes, please go ahead and tie my tubes. This is the baby I was meant to have.”
Tears leaked out of my eyes as I lay there, my insides spread open for the rest of my procedure. They brought me the baby, and my heart soared and ached all at once. He was alive, and he was beautiful and precious and mine! But this thoughtless woman had just treated him as if he were less than perfect, and I knew in my heart that she would be only the first of many people to treat him that way. I knew the world could be a cruel and unaccepting place, and I had just brought a beautiful new life into a world that would likely be hurtful to him. I loved him with all my heart…but I couldn’t help but wonder, was I selfish to have ignored prenatal testing and brought him into a cruel world? Would I have been a better mother not to bring him into the world? I felt confused and overwhelmed—brimming with love but battered by confusion.
And how dare this doctor mar the moments after my son’s birth that way? I realize she was doing her job, but I still ache to this day when I think about it. She didn’t even take a moment to congratulate us or to tell us he was beautiful. It was all about his disability, immediately. My beautiful, sweet baby was secondary to an ugly term called “Down syndrome.” Was this how everyone would see him—as a disability or condition first, and a baby second? The thought overwhelmed me. I saw him as a beautiful shining light, and I wanted everyone else to see him that way, too.
Waiting for the baby to come back from being bathed and checked out was the longest 90 minutes of my life. I lay there in the recovery room, alone and with tears leaking down my face, Googling everything I could about Down syndrome on my phone. Not my best idea—the Internet can be a scary place if you’re looking for information on Down syndrome! But when Chris (who I had sent with the baby) wheeled him into the recovery room 90 minutes later, I forgot all my fears. He placed the baby in my arms, and I held my sweet little sunshine for the first time. He snuggled right down into me contentedly, and I felt peace along with my confusion. My son might have an extra chromosome, but oh, how I loved him already!
We named him then—we hadn’t chosen a name before he was born. He is Samuel, which means “God listened.” Because God did listen. I’m not a religious person, but I threw a prayer up to God when Sam’s heartbeat was dangerously low, and He listened. And 18 months later, that name is even more appropriate, because God really, really listened. He gave us a baby who changed our lives for the better. He gave us the baby we never knew we wanted, but who we absolutely cherish and could not live without. Confusion and shock about his diagnosis are long gone, replaced with the brightest love I’ve ever felt.
People sometimes accuse us in the Down syndrome community of painting the condition with rainbows and unicorns—making it seem like something wonderful and special, and ignoring the concerns that go along with it. Truthfully, I don’t think any parent of a child with Down syndrome ignores the concerns that go along with it. We’re all well aware that yes, there are medical issues we may have to face—heart problems, digestive issues, higher incidence of leukemia, and so on. Believe me, we worry every time our child gets a funny rash or unusual blood-work results. And yes, we worry about people treating our child unfairly, due to his perceived differences. And yes, we wonder what effect our child’s cognitive delays will have on his life long-term. But every parent worries—that is not unique to the special-needs community. Perhaps we just worry about different things.
And the truth is that along with the worries come joy and beauty. Sam has taught us so much already. He has taught us how to celebrate the tiny joys and triumphs—the ones that we never even stopped to consider before having a child with Down syndrome. He took a bite of solid food—rejoice! He finally pulled to standing at 17 months—celebrate! He picked up a cup of water and purposely dumped it on the floor, then set the cup back down—what awesome fine-motor skills! He has taught us how to slow down and simply go with the flow, rather than focusing on the next big milestone or goal. He’ll walk someday—when it happens, it happens. He has taught us that there is no one-size-fits-all approach to life and that the best-laid plans are meant to be torn apart and scattered to the wind sometimes. He has taught us to love unabashedly and freely, without reserve—who can resist a toddler that gives any random stranger a full-body smile, complete with million-dollar grin, waving arms, and kicking feet? Sam greets everyone as if he’s just met his biggest hero—it’s completely awesome. And having Sam has introduced to us a whole world of fascinating, diverse, and wonderful people—both those with Down syndrome and those who love them.
If a future pregnancy were still an option for us, would I do prenatal testing this time around? Yes, I would—only to be prepared in case the baby had a serious medical condition at birth. We dodged a bullet with Sam—he was physically healthy from birth, but that isn’t always the case in babies with Down syndrome. But do I wish I’d had prenatal testing when I was carrying Sam? Not for a second. I am so glad we chose to skip it, because if I had known I was carrying a baby with Down syndrome, I would’ve spent my pregnancy terrified of the unknown. In the abstract, I knew I could love and care for a child with Down syndrome, but when it comes down to real life, I would’ve been scared out of my mind as I waited for him to be born. Instead of enjoying my final pregnancy, I would’ve been a nervous wreck, because I didn’t really know what Down syndrome was like. Now I do—and I know there’s nothing to fear about Down syndrome itself. There’s concern about the related medical issues, but most of those can be dealt with—even heart surgery is somewhat routine now. But when you talk about Down syndrome itself, I now know that it’s not scary; rather, it can be beautiful in ways you never imagined, and your life can be so very enriched because of it.
Sam is now 18 months old and the light of all of our lives. Chris has commented on numerous occasions that Sam has made him a better father to both of our sons. I am happier and more content than I have ever been in my life, and Sam is a big part of that. And Theo—well, Theo has just blossomed as a big brother. My impatient, volatile, brilliant little five-year-old slows down and becomes a tender, compassionate, patient teacher for his little brother. He delights in Sam, and Sam is the first person he wants to see every morning and the first person he wants to share things with.
And Sam himself? He’s a happy, silly, sweet, and, yes, temperamental little boy. He is a determined little monkey who aspires to steal anything he can find and throw it into the toilet. He loves music and will dance like crazy if Theo puts on the Spice Girls. He’s fascinated by our dogs and a big devotee of Baby Signing Time. Oh, and he hates therapy. He will attempt to pull every clever ploy in the book to get out of physical and occupational therapy, whether that means flirting with his therapist to try to distract her with hugs, crawling away as fast as he can, or sticking out his lower lip and throwing a full-blown tantrum. He’s a master at avoiding what he doesn’t want to do. In other words, he’s a very typical toddler!
Thank you, Samuel Ames, for opening our eyes…and continuing to open them every day.
Below: Sam at 12 hours old and Sam at 18 months old