Much of what you read about the moment that parents find out their baby has Down syndrome — and maybe this applies to other disorders diagnosed at or before birth — has to do with what the doctors did right or wrong in relaying this information. Some doctors present it negatively, some neutrally, and others are full of encouragement. Obviously, some methods of telling parents this life-changing news are better than others. But that isn’t what I want to talk about.
I’d like to talk about the reactions of friends and family, which can be just as important for the new parents’ emotional health. It is a time of such clarity in your life as a parent, you are unlikely to forget the words that were uttered by your loved ones when you told them the news, or at least the message those words conveyed.
For instance, my father’s reaction is something I remember quite clearly. Born in the 1930’s, my Dad is a frugal, loyal, sensible and hard-working person. He’s also a very religious Catholic. Almost every day, he goes to Mass. He prays novenas and rosaries. For some years, he worked for a Catholic university and also volunteered there, helping with, among other things, programs and trips for people with physical and developmental disabilities. Currently, he is retired and volunteers at a Catholic elementary school for the visually impaired. So, among everyone that I know, I figured that he’d have the most pearls of wisdom to share, that he’d probably say something profound or talk about what he learned while working with disabled adults. At the very least, he’d be full of optimism.
But when I told him over the phone, he reacted from the gut — the truest, most honest, most human reaction of anyone I told. Simple words that validated my deepest feelings: “Ah, no…” he almost wailed, “no, no, no, no, no.”
You have to know him to understand how hurt he sounded. Not for him, but for us. I felt like I might cry. But I thought I understood where it was coming from, at least. You see, he and my Mom had their own hardships with babies, much worse than anything I’ll ever go through. They had numerous miscarriages before having me, and even harder to bear, they had two babies born prematurely, about a year apart, who were baptized but did not survive. I’m an only child, and they waited and struggled 12 years to have me. Maybe he thought that after paying that debt, his family would never have to go through more heartache in a maternity ward. But there we were, hearts torn open. At least for a short time.
Of course, he just needed space to digest the news. I can’t remember if it was later that day or when exactly, but the next time I talked with him, he was calm and thoughtful, telling me what a special person our son would turn out to be, and that he would bring us closer to God. My Mom was poised from the beginning, taking in the news calmly, reassuring me that we would certainly deal with it and that it was all going to be O.K. She’s the real rock of the family. I’m more like my Dad, all raw emotion.
I appreciated his honest reaction because it reminded me that no matter how we think of ourselves — sophisticated, enlightened, hardened, religious, or philosophical — when it comes to our children, we are often nothing more than primal.
So I’d urge a tender touch with family and friends on the receiving end of the news, who may be just as stunned as the parents. Remember, everyone brings something different to the table, and when situations like this come up, some people struggle for words — I would argue that, among loved ones, there really is no right or wrong reaction. They might say “I’m sorry,” or “Oh, that’s terrible,” or express similar sadness. Give them a break, and don’t hold a grudge based on the first words out of their mouth. Their “I’m sorry,” might simply be a way of expressing empathy with you at a very emotional time. Whether quickly or slowly, they will likely all join your cheering section. But give them the time they need to process things. And if you are still processing things yourself, don’t tell too many people. Wait until your nerves at least feel a little less exposed.
If you happen to be the relative or friend of a couple who has just found out that their new baby (or baking bun) has Down syndrome and are looking for some encouraging things to say, here are a few ideas:
“I’m sorry you’re upset, but this does not change how excited we are about the baby. Take the time you need to digest the news and let us know how we can help.”
“Congratulations! She, and you, are going to be fine. There is plenty of support and educational therapy out there for children who have Down syndrome.” (Please don’t call it ‘Down’s,’ as in, ‘for children with Down’s,’ or ‘for Down’s children.’).
“We love you and the baby very much and can’t wait to welcome her into our family/home/circle/ya-ya sisterhood. What can we do to help with daily chores so that you can focus on learning more about the baby and seeking out all the medical advice you may need?”
“Can we help you find some local parents to talk with about this?”
Fellow parents rock, by the way. They are the best sources of support and information. Do not delay in seeking them out. If you live in or around Charlotte and don’t know where to start, please visit http://www.dsacnc.org.
We had to break the news to many people over the course of those initial months. Everyone was wonderfully upbeat and supportive. I especially appreciated the comfort imparted by one of my oldest and dearest friends, who was able to visit me in the hospital in New York after the twins were born.
I remember her telling me not to worry, because there were no guarantees in life for any child. No child is ever perfect, she said, and even those that are born “typical” can get sick or hurt or something else could go wrong later in their lives that you’d have no control over. Be glad that he’s healthy otherwise, and that people with Down syndrome are now living longer lives than ever before. And then she said something that really stuck with me: When the girls become teenagers and spend all day saying “I hate you, Mom!” he’ll be running over to give you a hug and saying “Mommy, I love you!”
Some days, I’m not sure I’ll make it that far. But if you stay tuned, I’ll let you know what happens.