Photo by: Julie D

Letter to Parents Facing a Diagnosis of Down Syndrome

Photo by: Julie D

Dear New Parent/Parent-to-Be:

First of all, congratulations on your new baby!

You may be feeling shell-shocked right now, recently having learned that your baby has Down syndrome. You are probably feeling very frightened: what kind of health problems might my baby have? What does the future hold for him/her? For me? How can I love this baby? Can I love this baby? You very well might be feeling angry and bewildered: Why me? How could this have happened?

This is called grief. It’s okay to grieve for the baby you thought you were going to have. Allow yourself to go through and feel those emotions. They are normal.

If you give yourself and your baby a chance, though, there will come a time when you will suddenly realize: what was I so afraid of?

When I found out that my son has Down syndrome, I railed against fate. What did I do to deserve this? Why me? I grieved for the baby I thought I was going to have, and for all the dreams I had for that baby that I didn’t even realize I had until they were shattered.

From the moment I saw my son’s little face… no, before that – since I felt him swimming and turning somersaults in my belly, I was overwhelmed with love and a fierce feeling of protection for him. When I found out that he has Down syndrome, the love didn’t go away, but there was an adjustment my heart and mind had to make. A big adjustment.

While I was busy grieving and adjusting, my son was busy just being a baby. Yes, he had that pesky extra chromosome in every cell of his body, but he was (and is) oblivious to it. Over the first year of his life, he learned how to roll over, to coo and gurgle happily at me, to cry when he needed or wanted something, to breastfeed like a champ, to sit, crawl, play with toys, clap his hands, eat baby food from a spoon, follow his brothers and sisters around, and pull my books from their shelves. Hmmm… he’s not so different from the babies I had before him, actually. His giggle is just as infectious, and his tears just as heartbreaking.

He is not lovable only for his sameness, however. He is utterly lovable for his differences as well. He has to work harder and longer to reach the milestones that other babies breeze through, making their achievement all the more sweet. He’s as unique as a snowflake, just as all children are.

I don’t know what doctors are telling parents these days – parents who receive a prenatal diagnosis of Down syndrome. I’m sure it’s a lot of technical, statistical, scientific gobbley-gook, though, and I don’t know that the information they tend to give is up-to-date. There are lots of books out there, some of them helpful, some not.

What will life be like for you and your new baby? If you really want to know, talk to actual parents of children with Down syndrome. You will be hard pressed to find one who wishes they didn’t have their child. But even they cannot tell you what your life will be like with your child. That is largely up to you and what you choose to make of it.

Some people will feed you platitudes, telling you that “special babies are given to special parents.” You will hear things like, “Children with Down syndrome are so happy and loving!” “They are angels in disguise, sent directly from Heaven.” Bah! I don’t believe any of that. Those are empty words spoken by people who don’t know what else to say, and who are secretly glad it wasn’t them who were “chosen” to be “special parents.”

Here’s what I believe: it was a fluke, this chromosome that triplicated in my son’s genetic makeup. Because of it, he shares certain traits with other people who have Down syndrome. I don’t know what he will be capable of, but I have very high hopes and high expectations for him. Those dreams I had for him that were shattered? They weren’t really shattered at all. It just took me a while to figure out that his life is not about my dreams, it’s about his dreams, and only he can decide what those dreams are. Only he will be able to show me how his life is going to play out.

Although I am not a believer in some grand, divine plan, I do believe that I have been given an opportunity for enlightenment by having my son. Having him has forced me to reevaluate what it is I value. What constitutes a happy, full life? Does a high IQ ensure happiness, or even success? What is the criteria for a life worth living? I have been given a gift of appreciation and perspective that I never had before. I am able to see and accept my fellow human beings with a more open heart and a broader mind. Sometimes, I secretly think that my friends who have not had a child like my son are missing out on something very big.

Those questions posed earlier… What does the future hold for him/her? For me? I don’t know the answers to those questions. But the truth is, none of us has the answers to those questions about any of our kids, whether or not they are born with extra chromosomes. Life is a crapshoot, for each and every one of us, and for each and every one of our children, and our children’s children.

There was a time when the prospect of living life with a child with Down syndrome was one of the worst things I could imagine. Now, the worst thing I can think of is to not have my son.

The most important thing I can tell you is this: It will be okay. It really will. You will love your baby, you will laugh again, life will be full, and enriched in ways that you can’t even imagine.

Lisa Morguess is a married, stay-at-home mother to six children.

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Thank you, Lisa, for writing this. It is one of the most accurate articles about Down syndrome I have ever read. I have a grown son who was born with Down syndrome 26 years ago and wish I could have read your words when he was brand new...

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Before I had my son Matthew, who is 7 and has DS, I was an intellectual snob. I judged people by their intelligence, I really did. My son has shown me what a fool I was. Truly. I love him more than my life.

Jo (London, England)

My 17 year old daughter was born with Down Syndrome. You said that so well. Another inspirational piece that might be of interest to people was written by Emily Perl Kingley. It is called "A trip to Holland."

My daughter may have physical characteristics like so many others, but she definitely has her own magnetic personality. She has a quick wit, and she loves to make you laugh.

Thank you! Our DS daughter passed away before her birth. We all wished we could have her with us. I have always said I would raise any child God gave me. We struggle with people who say, "It was for the best." It may have been for the best because God willed it to happen. It wasn't for the best because she had DS. I believe all children are gifts form God. They are all precious! All of them are given life for God's design...

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Beautiful. Thank you.

And this is a great reminder for parents of ALL children:
"It just took me a while to figure out that his life is not about my dreams, it’s about his dreams, and only he can decide what those dreams are. Only he will be able to show me how his life is going to play out."

I am blessed to be the grandparent of six beautiful children. I have 4 grandsons and then finally had two grandaughters. Our first grandaughter, Katelyn has Down Syndrome. She is as much a blessing as each and every one of our grandchildren. Katelyn just finished her second (and last) surgery to correct heart problems. Katelyn had made many strides in her 14 months. She is as loving and sweet as each of our other grandchildren. We wouldn't trade her for anyone on this earth...

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While everyone is entittle to their beliefs, I believe that babies with special needs are devine interventions to some families. I think that if each of us closely takes a look at our attitudes before having a baby and our issues afterwards, we really might see the growth that resulted from it. Sometimes the purpose is to simply humble us so that we can open our hearts to all mankind because we are all beautiful and perfect.


You are one of the most courageous women I know. You have had your share of ups and downs, and I am so glad that you shared one of these "up" moments in your life.

Having known you from MOMS Club, I had no idea that you were such a prolific writer in addition to all the talents you so obviously have as a mother, wife, and friend to others.

Thank you so much for sharing your eloquent words so that I might better understand all the blessings that mothers have!

Lorna H.

More and more adult Downs Syndrome people live in communal houses and have jobs. The picture is so much brighter everywhere.
I treat these children with homeopathy which makes them develop better than they would in speech and movement and ability to respond. Find a homeopath who knows about retardation and work with him or her to help your child's social, emotional and mental development.
They will never be "normal" but they will become more able to cope with our world...

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There is a woman who writes a weekly sunday colum in the Boston Globe, her grand daughter has downs and she writes such beautiful things about her (she is 6 now) My son was a 90% chance, but ended up not haivng it but was a preemie so i have dealt with delays and issues for his 1st 5 years (he is almost 7) Look her up:
Beverly Beckham

I cannot presume to know what it's like to have a child with Down Syndrome. But I do run a work experience program for high school students with developmental disabilities, and have maybe 20-25 current students with DS (out of about 130). I have been working in a related field over the past 15 years. That said, here are a few things I know:

*Freshman boys are freshman boys are freshman boys. IQ and physique just doesn't make one whit of difference...

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Beautiful, thank you for sharing your heart! I have several relatives with DS and my college dorm dean had an adult son with DS. They are such beautiful, special people. And as an encouragement to those who wonder what life will be like for an adult with DS- there's no limits! Just like with all 'normal' people, each DS adult is unique and have different strengths and challenges...

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As someone who has worked with DS kids in schools, I have to say that their potential is much more than what people may expect. The more normally they are treated, and the more intervention they have when they are very young, the more normal they are. Read to them (Pat the Bunny, books with named objects and pictures), take them places (the zoo, the air show), and do everything that counselors recommend before age 5...

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I am so incredibly touched by all the comments left here; thank you all.

Lisa Morguess

Lisa - We have been blessed with a 5-yr-old daughter with DS who brings us more joy than we could imagine. I, too, had to die to the dreams and plans that I already had for our little girl. What I've seen is that God's plan and purpose for her may be different than the one that I had, but no less significant. While it may take her longer to learn some concepts, there are others - like sharing and showing concern for others - that she has picked up before any of her typicaly developing peers...

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