How's It Going to Be?

Upon being reminded of this heartwarming story about the high school couple with Down's syndrome who became homecoming king and queen, I was brought back to a day more than seven years ago when I had to make some extremely difficult decisions.

I was 29 years old when I got pregnant for the first time. Lenny was born when we were 30. I had no risk factors during the pregnancy, though I did develop pregnancy-related hypertension later on and was put on modified bed rest until she was induced 10 days early. None of my friends had kids and I didn't know any other pregnant women at the time. So when I went in for various prenatal appointments, I had no idea what to expect or what was supposed to happen. If they said they were going to do blood tests, I handed my arm over. I tried not to read too much or get too paranoid about all of the random things that could potentially go wrong. I was thrilled about having my first child, but I didn't particularly like being pregnant. I know there are those glowing, maternal bundles of pregnant happiness out there, and I'm happy for them, but I wasn't one of them.

Then, one day when I was about 18 weeks pregnant, soon after my 30th birthday, I went on a business trip to Washington, DC. My brother lived in Virginia at the time and was scheduled to pick me up at the airport. As I was waiting for him, I checked my voicemail and there was a long, involved message from my OB/GYN. I could tell from the tone of his voice that there was a problem, even before I heard his words.

He was telling me that one of the tests I had done, the one testing for Down's syndrome, came back problematic. He went on and on about the prevalence of false positives, about how the test doesn't even test for Down's but rather for the potential of Down's, or something, but of course I didn't hear that. He said I needed to call him.

So I did. And then this tearful conversation ensued, where my excitement and happiness about my first pregnancy was torn apart, not because I would not love a baby with Down's, but because I was suddenly worried in a way I didn't realize I could be worried. What if she was in the 50% with heart problems? How would it feel to be made aware, before birth, that my child had a massively reduced life expectancy? Would we be able to take her to the daycare we had lined up, or would she need special care? What would her life be like?

Except I didn't think "her" because I did not know the gender of my child. I decided that I would have an amnio, not because I would not have the baby if she had Down's, but because I wanted to be able to plan for these potential scenarios if she did.

I had long tearful conversations with my husband, my mom, and others from the hotel room in DC. I felt so guilty admitting that it bothered me to imagine having a kid with these issues. My mom told me that you never know what is going to happen with your kids. You can't plan for anything. My guilt was exacerbated by the reminder that I was not exactly a child lacking issues. I had epilepsy, something that is potentially much more devastating than Down's. There is no "test" for epilepsy, and if there was, I obviously would hope that my parents would have chosen to have me anyway. I began to have conversations with parents of kids with Down's or people who worked with such kids, and I heard nothing but positive remarks about these kids and how awesome they were. And so, I learned the most important lesson that there was to learn about parenthood before my kid was even born.

All you want is for your kids to be happy.

It's nice if they're smart, and conventionally attractive, and all of that, sure. But you want them to have friends, to love and be loved, to just be happy. And I've never heard someone talk about a person with Down's without using the word "happy."

And so I made my peace with it, and decided to have the amnio in order to prepare for the potential problem, but also for this reason. I knew if I did the amnio that the doctors would know everything there was to know about my baby's chromosomes, and I decided to find out the gender, so that I could name the baby and feel closer to it by naming it.

Before the procedure, I had to go through counseling. I got a little angry with this poor woman tasked with talking to me about potential risks from the procedure, when I would need to make a decision about abortion, etc. I'm having this baby. I just want to know what I'm dealing with, I told her. God help me if anyone had been able to predict the shit that would go down with me and my body and my brain in this life.

The procedure was painful, and I had complications. I had cramping for days, not hours. I had to call the emergency hotline at my practice, and some doctor who was not mine answered; he was gruff and insulting, honestly. He asked me if I was having contractions, and I said I didn't know. He told me I would know. Now that I've had two kids, I know that I WAS having contractions, and I am faced with the reality that I came close to losing my beautiful baby girl just because of a test I did for something I would have dealt with one way or the other. And of course we learned that our baby was fine, and that she was a girl, and we named her Lenora, or Lenny, because that is the only name I ever wanted to give any daughter of mine.

Labor and delivery were extremely difficult with Lenny. When she was finally born, she was small. She had jaundice. She couldn't hear out of one ear. She refused to eat. In fact, she never really learned, and at 5 weeks I had to stop nursing her and I pumped exclusively until she was 7 months old and I couldn't take it anymore. She didn't even cry when she was born, and Gabe thought she had died. The doctor had to slap her to get her to make a sound. She was a runt; if she'd been an animal in the wild, she wouldn't have made it. She seemed to have no survival instinct at all.

She was perfect.

And she was so, so beautiful. One of the nurses liked her so much we thought she would try to steal her. My OB came to tell me how beautiful she was and I nodded, rolling my eyes. He said no really, I don't actually think a lot of newborns are cute. THAT is a cute baby.

And she was SO smart and SO alert that she never slept, and we had to entertain her as if she was an adult, talking to her, explaining the world to her. She barely napped; she just watched everything with those big eyes. We were exhausted all the time, for years.

She was perfect.

And so when I got pregnant the second time, after a year of secondary infertility that is the subject for another post, I refused all testing. I said look, I'm having this kid. I know now how much I'll love him no matter what. We found out his gender, which is easier with a boy, obviously. We named him. We decided against circumcising him, because I was operating under this assumption that voluntary surgery on a newborn seemed like a bad idea.

I've got to do an aside here about that. When making that decision, I was basically waiting for someone to give me one solid medical reason for circumcision. I had no feelings about it one way or the other. We are not Jewish, so there's one major reason that didn't apply to us. If people gave the reason that there were slightly higher rates of STD transmission from uncircumcised men, I would say, ok, well, I'm pretty sure we are middle class people living in a society with excellent medical care, and I can teach my son to take care of himself and even to use a condom.

Then, we would get all these bizarre arguments both in favor and against the procedure. I loved the logic from men who wanted their sons to "look like" them and they were circumcised so obviously, their sons should be too. Um, really? Do fathers and sons compare penises? And how about the part where HE IS A NEWBORN BABY? And therefore, he really doesn't look like you, in any way. By the time he's old enough to look like you, I'm hoping that you won't be comparing. And then there are the arguments about other boys teasing him in the locker room, or on the other side of the coin, how sex is better with an uncut guy, or whatever. And I said, so. I am supposed to make a decision about this surgery based on his hypothetical sex life years and years from now or with the idea of what his penis will look like when he's a grown man, though HE IS A TINY BABY AND HE IS MY SON. I mean, this from the society where parents would rather their daughters have cancer than get the Gardasil shot, because that implies an acceptance of girls' sexuality? Not interested in thinking about my tiny kid's sex life or what he'll look like naked at 18. NO THANKS.

One friend who had not circumcised her son gave me a rationale for her decision that made sense to me, though it didn't convince me one way or the other. Once Augie was born, I understood exactly what she was saying, however. We decided against circumcision because no one could prove a negative to this stubborn researcher who doesn't believe that "that's what we do" is a good reason for being one of a tiny few societies in the world that engages in a certain practice. Gabe is circumcised but he was unconvinced too, and he hated cleaning Lenny's umbilical cord so much, he was so worried about the potential for infection, that anything that could potentially cause more concerns like that was not appealing to him.

So there we were, in the hospital when I was 37 weeks pregnant, having that kid 3 weeks early, and we told the doctors we did not want to circumcise. Now, someday I will tell my birth stories, as they are both pretty damn good, but not today. Labor and delivery with Augie were so comparatively easy. He came into the world screaming, pissed off, started nursing furiously right away, scored off the charts on his APGAR and had absolutely nothing wrong with him. I'm still convinced he was born early because he was sparing my bum hips the 8 to 9 pounds he would've weighed if he had gone to term.

My friend's words came back to me when the nurse held him by the scruff of his neck, like a chicken, by the scale. There's my newborn son. He is perfect. How could I cut him?

After roaring into the world, he promptly fell asleep and stayed that way for about three months, apparently saving up his energy for later.


We didn't know what was coming that day, with him, with Lenny, with me. We did not know what to expect. We did not know how they would be, or how we would be, or, in my case, IF I would be, at least not for the long haul. And this long, long story is just a way to say that I am glad we took it on faith, and loved them, before they were born and after. I'm glad we were able to see them the way they are, the way this homecoming king and queen's parents see them, because it's the truth.

They're perfect.

In the first picture above, that's Augie on the left, Lenny on the right.