So, What DO You Say?

4 Oct

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

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.

5 Responses to “So, What DO You Say?”

  1. sue October 5, 2010 at 6:52 pm #

    I think this Blog is just awesome! You must truly cherish your oldest & dearest friend. Her words/advice to you made my heart smile;)

  2. Christine October 5, 2010 at 7:36 pm #

    Thoroughly enjoying the blog – so touching and inspirational to ALL.

  3. Lori October 5, 2010 at 10:12 pm #

    This is such an inspirational and beautiful blog. It is so heartfelt. I really admire your strength, dealing with twins and a special needs child. I know how difficult twins are, without adding any other issues. I especially agree with the part about your mom friends being helpful. You were so helpful to me when I was pregnant with the twins. I always enjoyed your
    e-mails. They were very encouraging. I look forward to reading more in your blog.

  4. Louisa December 6, 2010 at 9:58 am #

    I have a potentially annoying question – while I understand the politically correct things when they are about real differences in meaning (people experiencing homelessness instead of homeless people) what is the difference between saying “children with Down’s” and “children with Down’s syndrome”? I admit my logic fails me on this one. I can totally understand not saying “Down Syndrome Children” as that makes it sound like they are a syndrome first or something…

    • modernmessy December 6, 2010 at 10:27 am #

      Hello Louisa, and thank you so much for writing in!

      You actually have a great question there. I will agree that it is easier to understand why “Down syndrome children” might be a worse offense, because yes, it is putting the syndrome first. In terms of why people may not like “children with Down’s,” I think much of that has to do with sounding modern and up to speed versus perhaps still stuck in the past. You see, the syndrome itself used to be called “Down’s syndrome,” after the British doctor who first named it, John Langdon Down. The spelling, and preferred usage, was changed in recent years to “Down syndrome,” and is reflected in the names of national organizations.

      I think that many people used to, and some still do, say “Down’s children” as a shorthand, and this offends some people because it seems to be reducing the value of the individual. Saying “children with Down’s” echoes this and reminds parents of the old-fashioned stereotypes that surrounded people like our children. Understanding of the syndrome has increased so greatly in the past 20 years or so, and continues to advance rapidly each year, with research consistently showing that our children are capable of learning so much.

      I will put forth that knowledge is power, and it is always best to know the proper, or at least latest, way to talk about complicated things. But is it necessary to obsess over the semantics, especially among people who care about each other? No. Should we be wincing at every “apostrophe s” added to the word Down? Of course not. Most important is for us all to respect each other and try to speak, and think, with love and understanding as often as we can.

      I welcome other thoughts on this matter, as I am far from the expert. Thanks Louisa, for starting this conversation!

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