The Hardest Words...

“They’re pretty sure she has Down syndrome.” This is what my husband came to tell me after he chased down a delivery room nurse. He was talking about our baby. The baby I had just given birth to. The only baby we would ever have. These were the hardest words I ever had to hear. Ever. I don’t think I’ve told my story on my blog yet, but when I saw CHB’s challenge to talk about the hardest words you’ve ever heard, I knew it was the right time.

So many things came into my mind at that moment. Most of them were based on old stereotypes (did ALL children with Down syndrome have to have [institutional] haircuts like that? She’ll forever be a stumbling woman-child, holding my hand, not interacting with the world around her…never play sports…never enjoy arttravelshoppingmusicbooks…never go to school…never have friends…). I knew so little, if anything, about Ds, even though all throughout my pregnancy I talked about it as being a very real possibility due to my advanced, over-35 age (I was 37).

Getting pregnant had been a challenge in itself. While I’ll spare anyone any TMI details, after many years of trying finally culminated in getting the help of a reproductive endocrinologist and a prescription for Clomid, we were finally on our way. Routine ultrasounds never turned up anything out of the ordinary, and we refused any of the more invasive testing. It had taken us that long to get where we were, and I wasn’t going to jeopardize the health of my baby with large needles, especially since we would not have done anything with the information if it had been less-than-perfect anyway. I was grateful to my OB for not pushing the issue when I refused. Steve and I had spoken about all the “what ifs,” and he always reassured me that he felt the exact same way as I did - it would be our baby, no matter what, and we would work through any special needs in the unlikely event that there were any. All through my pregnancy I kept thinking of all of those “what ifs” but knew that they were pretty much unfounded. “My baby’s certainly not slow!” I said when I would feel her enthusiastic (and powerful!) kicks.

Although Steve remembers it differently (and says that I was cloudy from the lack of sleep and the epidural and can’t recall it correctly), I’m certain that immediately following Samantha’s birth, I asked the doctor, “When will we know if she has Down syndrome?” The doctor took a closer look at the baby wrapped in blankets in my arms and said, “Hmmmm,” and walked out of the door. Nobody, in my recollection, ever came by to definitively tell us that our baby had Down syndrome, but Steve followed one of the nurses to the nursery and asked her point blank, then came back to break the news to me. I don’t fault anyone for not coming to tell us, especially since we already suspected it, and were able to handle the news relatively well (relative, meaning we were ready to face it and do what we needed to do – this was a baby first). The hospital staff and all of our visitors were incredibly supportive, offering only congratulations on the birth, and positive information on the diagnosis.

There was a whirlwind of visitors in the next day or two. Samantha’s health was good, and she was to leave the hospital on time, with us, on the 3rd day. A social worker came at one point, bringing a folder of leaflets and pamphlets about Down syndrome. One of the photos struck me immediately – a child with Ds at school. My daughter would go to school! She would make friends! Then came the visitor who brought with him the next hardest words I ever heard. Steve had gone home to feed the cats and shower, and my mother and I were alone in the hospital room. Dr. H was a cardiologist. He had a friendly face, and a warm demeanor. Listening to him speak, I got the sense that everything would be okay. He went on to talk about the large percentage of children with Down syndrome who had heart conditions (not Samantha, certainly!), and that Samantha (my Samantha?) had a hole in hers. One that would require surgery to repair within 3-6 (years…whew! Don’t have to think about it yet...) months (what?) or it would most certainly become fatal in what would be a very slow, painful death (what?!? You mean we have no choice in this matter? Steve, get back here, now…) This was almost harder to hear than the original diagnosis. But as I said, Dr. H made me feel like we were in good hands, which we certainly were.

We went home on day 3, new baby in tow. We went about our lives as new parents, learning all there was to know about diapering, feeding, burping. We spent all of our free time on the internet, learning all there was to know about Down syndrome. I was obsessed with photos of children with Ds, wondering about each child’s life, their parents, their friends. I sought out the tales of parents whose children had had open heart surgery, feeling the need to prepare for every little detail. Post-surgical photos, while incredibly difficult, helped me to get ready for what couldn’t wait very long. We knew we were ready for whatever was to come.

Only two people, upon hearing of Samantha’s diagnosis, ever said “I’m sorry.” The first was right after Sammi’s birth, and from someone who didn’t know what else to say to the sobbing me on the other end of the phone line. That was completely okay. The second was months later, from an older, foreign co-worker who was visibly upset by the information I passed rather casually to her in general conversation. Perhaps it was a cultural or generational thing, and I don’t fault her, either. If I learned anything, it was that people naturally will respond to your cues. If you are okay with things, they will be okay with things, too.

And we are definitely okay with things.