Tuesday, July 28, 2009

Open 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 summersaults 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 gobblety-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.

25 comments:

ds.mama said...

Lisa, this is great and very very true.

ds.mama said...

p.s. though it may coincidence, this gets you thrown into the summer giveaway.

Monica Crumley said...

Beautiful post. I would've loved to have read this 20 months ago, but of course, Finnian wasn't even here yet. How quickly we've all grown with the help of our children. The future will be bright and full -- I'm sure of it. Thanks for being out there, Lisa.

Monica, mom to John Michael

Jodi said...

This needs to be in every doctor's office, published in every parents' magazine, and hand-delivered to anyone with a diagnosis of Ds. Beautifully written.

heather said...

I agree with Jodi's comment. I know it takes each person their own time and journey to reach the peace and acceptance that is awaiting them but I would have LOVED to have been given this letter when Morgan was born. I completely agree with you on all of the points you address! I also feel like other families are missing out on a little something extra by not having a child with special needs. It makes life's experiences all the sweeter and richer. I always say that Morgan's birth made our family go from ordinary to extraordinary! I hope this letter gets published and given to new moms!

Keri said...

What a lovely letter. I really admire your ability to put your thoughts and feelings into words.

Hector and Jennifer Varanini Sanchez said...

This needs to replace or at least go hand in hand with every "Welcome to Holland" letter! You have written a masterpiece. I agree with every word in it. AWESOME!!!

Carla said...

Beautiful.

Sharon said...

Love it and agree with every word.

Laurie said...

Very nice, Lisa. Well said...

Also wanted to let you know that I have an award for you on my bog...xo

The Beers Family said...

Lisa, what a beautiful letter. This should be published.

T21 Traveling Afghan said...

Lisa, this is BEAUTIFULLY written and I'm sure will do exactly what you intend it to by any eyes falling upon it in that circumstance. Those early days are hard and it's good to get the word out there that they don't last forever and life begins anew!!

Lisa said...

I'll link to this on Bridget's Light. Love it. Look how far you've come! And how you are helping new parents. A great contribution to the fight for all of our kids...

heidi marie said...

great post..i just wrote about something similiar today. it's not an easy path but it's so worth it and such an amazing journey if you let it be!!

Loren Stow said...

I would SOOOO love to print this and deliver it to every doctor's office for moms who receive the diagnosis that we did.
I think it will make THE WORLD OF DIFFERENCE!
So well written, so honest, so beautiful!!

Larry said...

I second Jodi's post - can we make this happen? Lisa

Ria said...

Beautiful post!

Alycia said...

Perfect. That's the only thing that comes to mind.

Karly said...

I finally had the time to give this post the attention it deserves. Thank you for writing it. Lovely and true.

Beth said...

Lisa,
How am I just now getting around to reading this? DRIPPING with truth and love! Made my cry.
Well done, sister.

Ann said...

Beautiful and enlightening, Thank you so much for sharing this. Everyone should read this.

mauimom said...

Hi Lisa, I just came upon your blog and I have read your birth story and the open letter. Love both. As others have asked above, would it be ok to print off the open letter to send to my OB?

Eva said...

Amen. Beautifully said.

My name is Sarah said...

What a beautiful letter Lisa. After twenty wonderful years with our dear Sarah, I can only agree all the more with your poetic words.

The Sanchez Family said...

Just shared your blog with Kelle..Nella's mom with the new diagnosis...her last post was about wanting to get out of Holland so I thought I would pass her on to this letter!