five things i wish i had known when my daughter was born with down syndrome

Today marks the eighth anniversary of World Down Syndrome Day, a global awareness event.  World Down Syndrome Day is specifically celebrated on March 21st, because it reflects the fact that Down syndrome, also known as Trisomy 21, results when a child is born with three copies of the 21st chromosome, instead of the typical two copies.

In honor of this day, we wanted to share with you a special guest post by fellow mommy blogger, Amy Julia Becker, who is the proud mother to a beautiful little girl who has Down syndrome.

amy_julia2

In a simple, yet profound way, Amy Julia lists out just five things she wishes she had known when she learned that her daughter was born with this affliction.  Five things she knows now that wishes could have told her “younger self”  that would have helped a little, provided some comfort during such a scary time.  Five things that would have assured her that it would in fact be more than ok.


Read on…I know you’ll find Amy Julia’s post just as powerful as I did.

– Shraddha

Seven years ago, on December 30th, our firstborn daughter came into the world. It was an easy delivery—a little early, but not premature, no signs of distress or trouble, just a shock of black hair and a puffy face, and eyes the color of the sea on a cloudy day. But two hours after Penny was born, we learned that she had Down syndrome, the presence of a third copy of chromosome 21 in every cell of her body. We thought we had been given terrible news.

Now, I look back on that young mother, and I want to be able to hold her hand and look into her frightened, angry, sorrowful eyes and tell her not just that it will all be okay. I want to tell her why it will be more than okay. I want to tell her how her daughter will change her life in ways she never could have expected. I want to take her worry and grief and confusion. If I could, here is what I would say:

You think Down syndrome means tragedy, and people will compare your experience to that of losing a child in a car accident or to cancer or some other horrible fate. And though you will experience a sense of loss, you will realize eventually that you have lost a hypothetical child, and that the child right in front of you, this child, with her sparkling eyes and crooked teeth and warm soft hand, this child is a blessing. In time, because of the privilege of knowing and loving her, you will realize that your grief has turned to gratitude and that your worry has turned to wonder.

You think Down syndrome means isolation, but you will discover that it brings a world of connections. It’s not only that you will now feel a bond with other parents of children with Down syndrome throughout the country and around the globe. It’s that having a child who looks and acts somewhat different from what you expected, a child who you see as beautiful and funny and kind and smart and brave, will help you to recognize that same beauty in everyone else. You will think your world has become smaller, when it has only begun to grow.

You think that Down syndrome means hardship, for you and your daughter. As with any child, you’re right. There will be sleepless nights. There will be doctor’s visits. There will be a time when you find her sitting up in bed with eyes sunken into her head from dehydration after a stomach flu, and you will rush her to the hospital and she will stay for two days. There will be meetings with her teachers who talk about behavior plans. You will worry about her health, her ability to make friends, her future. And yet you will also realize that every life arrives with hardship. And every life arrives with the potential for inexpressible joy.

You think Down syndrome means special treatment. And other people will, with very good intentions, treat her as if she can’t learn and can’t sit still and can’t communicate. But you will believe in her abilities, and you will discover that she can sit in time out just like her little brother. That she can communicate through sign language before she is able to talk with words. That she will work harder than any kid you’ve ever known as long as she is motivated, and that even though it takes longer for her, she will learn—to read, to swim, to tie her shoes, to ride a bike, to use gentle hands with her baby sister. You will learn not to treat her as special, but as her own person, with particular struggles and particular gifts.

You think Down syndrome means giving more than you have to give. And some days it will feel that way, as it will with each of your children. But then she will come over to you, with your head in your hands after a fight with your son, and she will say, “Mom, should we pray?” She will come home from school and embrace you and say, “I had a happy day Mom!” She will give back far more than she has ever taken.

She will break your heart. Wide open. And you will be forever forever grateful.

amy_julia3
photo courtesy of Paloma Torres

This post was written in honor of World Down Syndrome Day. Amy Julia Becker is the author of What Every Woman Needs to Know About Prenatal Testing: Insight from a Mom Who Has Been There (Patheos, 2013) and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny (Bethany, 2011). She blogs for Patheos at Thin Places. She lives in western Connecticut with her husband and three children. 

Comments

  1. This is beautiful and reminded me of Emily Perl Kingsley’s “Welcome to Holland” – http://www.our-kids.org/Archives/Holland.html

    • chaimommas says:

      Thanks for commenting Priyanka!! Will have to check that out. Thanks again!

    • Kathleen Ball says:

      I remember “Welcome to Holland”. The dreams we had for our first child were lost when he was born, but he was a beautiful child (not with Downs, he had hydrocephalus, cerebral palsy) and we loved him all his life (life expectancy–a few years, actual life–3 months shy of 21)

      • Shraddha says:

        Hi Kathleen…loved “Welcome to Holland”. I can relate too…as I gave birth prematurely to my twin boys, lost one at merely five days of birth and the other spent time in the NICU. Definitely not what I envisioned. Please email at shraddha@chaimommas.com as I would love to connect and share more of our stories.

  2. Such a beautiful post. Thanks so much for sharing!

  3. PEARLEAN PARRISH says:

    MY ADOPTED DOUGHTER IS NOW 44, MY STORY WILL BRING TEARS TO YOUR EYES AND JOY TO YOUR HEART, IT TOOK A LONG TIME TO FIND ANSWERS TO MY QUESTIONS, WOULD LOVE TO SHARE WHAT I HAVE LEARNED PP

  4. Ronan Niland says:

    I have a beautiful son with D.S. Sometimes I wish that other people could see the wonderful person that I see, and not just a child with D.S.
    In the same way that you could never ever fully explain to a person that does not have a child just how wonderful and magical it is (even if they are the best Aunt or Uncle in the world), it can be very difficult to explain to someone who does not have a child with D.S. that it is not the end of the world. The child will take you places that you would never have imagined. The day David started playing football with the local club, it must have been dusty and windy, because I felt a tear running down my cheek when I saw him running with the ball.
    Nice well written article.

  5. My sister”s 4th child was born with prader willi syndrome. When we got the diagnosis we were all scared and sad. Then we read Welcome to Holland. We learned that he has different things to offer. We would lovingly call him the boy from Holland. Now he’s almost 13 . We have a list of 5 things that William does that typical kids usually fight about. 1) he loves church 2)He loves going to school. 3)he will try any kind of food and likes them all. 4)He loves going to bed even for naps 5) he never fights for the front seat in the car..Our lives have been forever blessed and life is full and wonderful.

    • chaimommas says:

      Hi Celine. Tanks for sharing your sister’s story. What a wonderful little boy!! I’d love to discuss sharing a post about this syndrome if you and your sister are interested. Please let me know. shraddha@chaimommas.com

  6. Beautiful. I wish our nation and world had more like you, Shraddha. You have deeply touched my heart.

Speak Your Mind

*

Current ye@r *