Our narrative began, as many stories do, with a pregnancy. A twin pregnancy, it turned out, to our eternal surprise. We were scared, but elated too. Luckily, it was a pretty uncomplicated pregnancy, and I worked full-time until my 34th week. I was hoping to avoid a C-section, and my doctors agreed. They were excited about the prospect of delivering twins. But my body had other plans. At 35 weeks, I got a painful uterine infection that brought on contractions and got progressively worse. I was not dilating at all and the babies needed to come out. Off to the operating room I went.
I was terrified, but the surgery went fine. We learned it was a boy and a girl, and my husband, from his perch behind the white operating sheet, said “Oh, he’s cuuute,” when the boy was born. But the babies were whisked immediately away, to be treated for respiratory distress. I didn’t even get to see them. Then, I was knocked out cold because I was an emotional wreck after the painful labor and surprise C-section. Apparently, I kept saying “Ow, ow, ow!” as they were sewing me back up and freaking out the anesthesiologist. Two hours later, I emerged groggily from my stupor and my husband said the babies were fine; it was too late to see them now. He told me to get some rest. I was disappointed but exhausted, so I complied.
They next morning, I felt pretty refreshed for someone who had just had two big-headed babies taken out of her stomach and was doped up on Percoset. (Good stuff, that.) I couldn’t wait to get to the nursery. The kind of anticipation you feel when you are about to discover a newborn child, or children, for the first time, is magical beyond compare. I couldn’t wait to meet them and see the “cute boy” especially — our only son!
The girl’s crib was first. Oh! Look at that little pink face and that dark wavy hair. And those cheeks — they could conceal handfuls of M&M’s. Hello, little girl baby, you look so much like your big sister. Where is your brother? Ah, there he is. Aww…look at that adorable spiky hairdo — he must have had a personal stylist in the womb. But wait, why do those ears look so funny, like little shoots of cauliflower? Maybe there was some trauma when they took him out and the ears haven’t unfolded yet. Hmm, from this angle his face looks funny, almost like he has…Down syndrome. But how could that be? We did the screening tests, which I know don’t actually diagnose anything, but still, there was no indication….
Let me look at the girl again. (In the beginning, we called them “the boy” and “the girl” even though we had names picked out. I guess there is more of a disconnect when you don’t know the sexes ahead of time and you are still processing that part of it). Hello, little chubby cherub girl; you look like I expect a newborn kitten-human to look. I’ll be back. Hello, little cherub boy. How are you? You still look a bit strange to me. It was Labor Day weekend and the hospital seemed short on staff, particularly a doctor I could ask about this one small glitch.
A nurse I cornered brushed it off, saying, “Oh, you can’t tell at this age.” In the end, this was not a helpful thing to say, because this leaves the hormonally unbalanced mother stuck with two unpleasant options: either she is crazy and cynical, or her baby son really does have Down syndrome and no one has the guts to tell her. I did eventually find the doctor on rounds that morning, but in my confoundedness, it seemed that he did more hemming and hawing then actually answering my questions, mentioning something about a “test” and how we’d really have to talk to the neonatalogist on Monday. Monday?
I went back to my room, feeling a little winded, but still chipper enough. My husband did not answer the phone at home, and I figured he was already on his way back to the hospital, so I called our doula, our labor helpmate. Who, by the way, was about as heaven-sent as they come and helped us through the birth of our first daughter too. She said that yes, the obstetrician had mentioned something about how our son had some markers for Down syndrome, and the doctor told my husband too. OK, so I wasn’t crazy. But yikes! Down syndrome? How were we going to handle that, plus twins!!! Well, maybe he doesn’t actually have it, or he has a mild case or something, is that possible? But wait…my husband knew? And he didn’t tell me?
When I spoke to him later, he said he wanted to call me that morning, but was busy getting our almost 3-year-old daughter up and ready to go to his mother’s house so he could rush back to the hospital. He said the doctors wanted to tell me the night before, when I woke up after the birth, and he told them no, please wait. I have to say that, in the pantheon of wise decisions made by devoted husbands on the fly, this would have to be among the very wisest. Coming out from unconsciousness and then being told that your son has a condition that will make his life a struggle to achieve what others take for granted is probably not a good idea.
So this is how we began our journey, my son and me. He played the part of the mysterious stranger, and I played the part of the confused mother who doesn’t understand why she is so put off by her new little son. His little birdlike face, his floppy little limbs. In some of the first pictures we took of him coming home in his carseat, he looks like a miniature old man. It took me forever to think of him as cute, but now of course, two years later, I think he’s adorable, beautiful really. In those first days, it was the love and support of all our family and friends that buoyed us, as well as the tender care and wealth of information bestowed on us by everyone at the hospital. To all of you, thank you for giving us such a solid start. We will never forget it.