My response to a new mother of a child with Down syndrome

March 20, 2009 at 1:02 am 11 comments

Today has been a difficult day for no reason in particular. 

I woke up feeling defeated and deflated…and still had yet to start the day.

My attitude got worse as I gathered up hours all around me, I made bad choice after bad choice to sit around and lull myself into a sad comma.

This evening after dinner, Sergei walked to the library with L & Z.  After cleaning up the kitchen I put in a video for Polly and sat down to peruse some of my forums. 

And I found a post from a mother who just found out her unborn child has Down syndrome.  She is in her darkest period…getting over the shock of such a diagnosis and grieving the loss of the child she thought she was going to have.

Polly sat in the living room, mimicking words and signs from her show and I hit the respond button to this women’s post.

And this is what I wrote:

Thank you for being brave and coming here to tell us how you are feeling about your daughter’s diagnosis.  You are normal…most of us have been through this and we want to support you.

Let yourself grieve…give yourself time to process all of this and I’d even dare to say go to the end and back, think about everything this will mean for you and your family. Your emotions are expected and it’s common to play the “what if” game. I think it’s all part of this.

One day you will look your little one in the eye and you will be washed from head to toe with a wild love for her…it will clarify so many things in your life, so much so that many other things and experiences will pale in comparison.

For some of us, the beginning was so dark as we grieved the loss of the child we expected. And then… I get giddy thinking about it…, then it’s like lightning zapping you a million times a day, this love for your child who you thought you wouldn’t be able to love.

Oh the light that my daughter brings to my life.

It’s like living near the sun.

My prayers with you!  God bless.

When I finished writing to this woman, whom I understand, whom I am sorry for because of the pain she has today, I went over and scooped up Polly for a cuddle and kissing fest.  We laughed and I looked at her hard and long, usurping all the Vitamin D I could from her pores.


I love this little girl.




Entry filed under: Down syndrome, Grief, Having a baby.

L & Z’s new room World Down Syndrome Day!

11 Comments Add your own

  • 1. mmichele  |  March 20, 2009 at 6:16 am

    Thanks for sharing that with all of us.

  • 2. The Unknown Contributor  |  March 20, 2009 at 12:01 pm

    What a wonderful, beautiful response you wrote to her. And it is all true. I love living near the sun!

  • 3. My Name is Sarah  |  March 20, 2009 at 12:27 pm

    This is Joyce. What a beautiful reponse you wrote. Sarah will be 20 this summer, yet I can still remember those first few days. It is so easy now to look back and say how silly our fears were, yet I think it is an important part of the journey.

  • 4. sippycupnation  |  March 21, 2009 at 2:25 am

    My name is Anne – and I got your link from Cindy Fey’s blog and this post really moved me – moved me enough that I feel compelled to share my neighbor’s story with you. Annie, a senior in HS, also has Down syndrome. She takes care of our cat whenever we head out of town – and this fall, was in the running for the HS homecoming queen. If you want to know more about Annie, here’s the link to her story:

    (I’m very hesitant to promote my own blog post in this way, but I do it because it’s an inspiring story about a darling girl – and I think you’d appreciate what Annie’s mom has to say in it. In those early, hard days, she was inspired by George Will, of all people, who wrote an absolutely lovely column about his son with Down’s.)

  • 5. Stephanie  |  March 21, 2009 at 2:56 am

    I know which post you are talking about and I keep going to type something but can never seem to find the right words, so DITTO to what you wrote, amazing!

  • 6. Ecki  |  March 22, 2009 at 5:04 pm

    Beautiful and inspiring reply! Love the pic! Can you believe our girls will be another year older soon?!?!?!?

  • 7. kristi  |  March 25, 2009 at 6:46 pm

    When I first really found out TC had autism, I mourned. There are days when I STILL cry. About a month ago, I blogged about my worries for him, I was at a really low point. He was officially diagnosed at almost 6 years old, yet a year later, there are DAYS when I have a really hard time.

    I knew I was strong, but I had no idea how strong until this diagnosis.

  • 8. Pregnancy  |  March 27, 2009 at 10:25 am

    That’s poor her… What ever happen are happen.
    just be happy with it. cheer up 😀

  • 9. norma1944  |  September 3, 2010 at 4:07 am

    I know this must be devastating but try and stay positve. Children with Down Syndrome are so loving, and stop and think she will be with you for the rest of your lives.

    • 10. norma1944  |  September 3, 2010 at 4:09 am

      What an adorable picture, she is precious. May God Bless you and your household.

  • 11. norma1944  |  September 5, 2010 at 4:01 pm

    Your daughter is simply adorable. We do not understand why things of such great importance happens. I know I lost two children 9 years a part . But with out the grace of God I could not make it on my own..
    Hang in there. God has you a gift for life that is a postive way to look at this precious child. and its Mother.


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