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Letter to Parents Facing a Diagnosis of Down Syndrome
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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Pamela Wilson, November 23, 2009
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. My son was in kindergarten when I wrote "Thoughts from the Middle of the Night" - http://www.bellaonline.com/articles/art32533.asp -
It was meant to be a Thank You note to families who paved the way for the opportunities they created so he could show us his true potential. This Thanksgiving I will keep your words in mind as I celebrate the gratitude I feel among friends and family for my life and his. I feel so thankful for all our sons and daughters, and for mothers like you who reach out to us all.
Jo Mercer, November 24, 2009
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)
Randa Barbaro, November 28, 2009
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.
Dana , November 28, 2009
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. I can't explain it but I love that little girl just as much as all my other children and each day my love grows. It really would have been my pleasure to raise her. That little girl makes me work even harder to get to heaven. I want to get to know her better.
Chantel, November 28, 2009
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."
Kathie Kosanke, November 28, 2009
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. We have many hopes and dreams for each of our grandchildren, Katelyn included. For each of them our hopes are that they reach whatever goals they each set for themselves. Katelyn and all of our grandchildren have taught me patience and understanding beyond what I had as a parent. As much as I loved and love our children, being a grandparent of any child is truly a remarkable experience I am glad to have been able to have.
Toni Hall Parker, November 28, 2009
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.
Lorna Hertogh, November 28, 2009
Lisa,
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.
Laeh-maggie Garfield, November 28, 2009
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.
Downs syndrome as Lisa points out is just another type of person whose upbringing challenges parents.
When a friend of mine raised a bi-lingual Downs Syndrome daughter it broke all of what I had been taught apart. Just as the fact that my friend was brave enough to have two more children once her daughter was a few years old.
Podycat, November 28, 2009
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
http://search.boston.com/local/Search.do?s.sm.query=&...=
Shan S, November 29, 2009
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. I can spot 'em within 2 minutes of walking into a classroom.
*Some of my DS students will always have a place in my heart. Not because they are "happy and loving"... they aren't always... but because they have a wicked sense of humor and want to be loved they same way they love others, and because they have their limits in what they'll tolerate from others.
*Given the opportunity and support, people with DS will grow and develop and become as independent as possible. Anyone, especially a parent or caregiver, who doesn't realize this does an incredible disservice to their person with DS. Fortunately, more and more people seem to realize this these days.
Thanks for writing this letter. I can imagine how it might be coming at just the right time for a new parent or parent-to-be.
sarah, November 30, 2009
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. One of my DS cousins is married and has two normally developing children! Oh- and she owns a restaurant!
I have four beautiful little girls, all on the autism spectrum. I also have many babies that have died pre-birth from 5 weeks to 40 weeks, 6 have died in the last 1 1/2 years. All children have the potential of being a tremendous life changing blessing to their families if they are simply embraced and loved.
Ellen, November 30, 2009
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. I would mainstream all DS students (with an aide) in kindergarten and first grade, and, if their personalities are outgoing and strong, you can mainstream them a lot longer. These kids are not as handicapped as you might think.
Lisa, November 30, 2009
I am so incredibly touched by all the comments left here; thank you all.
Lisa Morguess
Lori B, November 30, 2009
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. She approaches each day with a joy and vigor that would exhaust most of us and typically doesn't let the little stuff get her down. (I still don't know how she can wake up at 5:00 am, bounce out of bed and give me the cheeriest, "Hi, Mommy!" that I've ever heard, but even in my foggy state at that hour, it's so sweet to me.) Overall, I'm pretty sure she just enjoys life more than most people - something that I'm trying to learn from her...
