Tuesday, May 12, 2009

The Welcoming Committee

No matter when you get the news that your baby has Down syndrome, there is that time period of shattered expectations, of fear and worry. Maybe it happened when your baby was born and you were taken completely by surprise. Or, perhaps it wasn’t a total surprise after all, but the certainty of the diagnosis in the delivery room displaced any hope of a mistaken marker.

For some, those who knew for sure and those who were blissfully unaware until later, that tough time period takes place in private, and the news is shared at the comfort level of the parents. But for those who find out in the hospital, oh the grief is so public, and there is not much time to absorb the shock before the news must be shared with family and friends.

I was one of those "not quite surprised" but not quite ready for reality either. So I had the good fortune of not bursting into tears in front of the strangers on my delivery team and yet I had a long way to go before I could even say it without choking up, "She has, tissue please, Down, sniff, syn, sniff, drome."

I know a young man with Down syndrome and I had seen some children with it here and there, but I had never seen a real live baby who had it. She looked so.... regular... so much like... a... baby. She cried, peed, pooped, rooted, burped, and generally looked cute. But there were those signs, those tiny differences that meant her life would be harder because all the world might not accept her with open arms.

And so for days, I second guessed every decision of importance I had ever made in my life leading up to her conception. Then I worried for her, right through her whole life, in my imagination. I cried for every slight and hardship, and loss she might endure. I wanted to kick the next person who told me a story about someone’s kid with Down syndrome who did something normal... "So-and-so’s kid even graduated from highschool..." or anyone who fed me the platitudes, "They are so joyful...God chose you because you are such a good mom."

It was rough, I admit it. Probably more so because we were stuck in the NICU with no exit in sight. And then it happened... a friend stopped by with a gift bag. In it were little toys for my daughter and a book for me. It was Roadmap to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome by Jennifer Graf Groneberg.

Eight weeks earlier, our fetal cardiologist had given me a packet on Down syndrome and buried in it was the poem, "Welcome to Holland" by Emily Perl Kingsley. I didn’t like it. I had been to Italy, twice, and if I was going to Holland, I wasn’t going to piss and moan for the rest of my life about not getting back to Italy, nor would I be jealous of other people’s children. The Dutch are probably a little annoyed at being compared to the loss of a dream, and for some odd reason I was annoyed too. Please don’t write me a bunch of comments deconstructing and explaining the poem. It just didn’t do it for me (or for Jill over at Rivers of Joy.)

But Roadmap to Holland did. I felt like she was walking in my shoes. I cried and laughed with her. And I was thankful to my friend for bringing me the first thing that helped me to put my head back on straight. Before I left that hospital, I gave the book away, passed it forward, to a couple who had just been delivered a surprise.

When I went out to Amazon.com to replace my copy of the book, I found myself ordering three more copies. I knew then that I must continue to pass it on because every parent who gives birth to a baby with Down syndrome, whether surprised or not, should have an experienced mother come welcome them into this new world. I can’t go in person, as that would require a breech of HIPAA, but I can leave gift bags with the nursery staff with instructions to give them to new parents of babies with Down syndrome.

Your Turn
Maybe gift bags aren’t your style or in your budget, but a handwritten card or letter is just as precious to the new parent who is encouraged by it. Or perhaps you have some other creative way to welcome new parents that you can share with us. Would you consider being the welcoming committee for your local hospital?


  1. I love this idea! I had thought of doing something similar with the book Gifts: Mothers Reflect on How children with Down Syndrome Enrich Their Lives and I had thought instead of having them offered to expectant mothers who have an ultrasound or amnio diagnosis in the hopes that they wouldn't abort. But I didn't think I could just waltz into the hospital and ask them to do that...maybe it is that simple. I still have yet to read Roadmap to Holland but now you make me want to.

    (mom of Leo(Ds), 10 months)

  2. Sandra...thank you, I was one of the lucky parents to recieve this book from you after Coco's birth. It sits next to my bed with lots of post it notes on the pages I like to refer back to. I have also since passed it along to another family.


  3. Sandra, thank you for this lovely, honest post. It really resonates with me. Finn's diagnosis was an after-birth surprise, and like you, a friend sent me Road Map to Holland while Finn was in the NICU. That book was like my lifeline when I felt like I was drowning in fear and sorrow.

    How absolutely wonderful that you've paid this forward the way you have. I have been thinking a lot lately about contacting my local hospitals and asking to be made a contact person for new parents receiving a diagnosis of Ds for their babies. I love the gift bag idea; I think I'm going to have to do this.

  4. You recently came by my blog and read my daugther's birth story and your comment was precious to me. Thank you.

    I heard about Jennifer about one year ago through Blueberry Eye's blog. I ordered the book and read it - all the while crying. It was the first piece of material I read on Down syndrome - everything else I stayed away from because it was all so negative.

    Recently, I found Jennifer on facebook and befriended her there - what a blessing she is.

    I thank God for women like her, yourself and so many others who are willing to speak about their experiences.

    BTW, if I didn't tell you before - I love your blog and will make mention of it on my blog and facebook.

    Again, thank you.

  5. Just thought I would let you know that Libby from "Blessings and Glory" is giving Roadmap or Gifts away to parents with a new diagnosis.


  6. Thanks Cathy. I have updated the link to point to Libby's free book post.

  7. Thank you for sharing this great gift bag idea. I will have to do this. Like Lisa, Matthew's diagnosis was an after-birth surprise too. But there was no gift bag like this waiting for me. Instead there were handouts, more factual information about Down syndrome, and information about the local Down syndrome association. At that point, our emotions were still raw and we weren't ready to read more facts. I might have been more willing to read Road Map to Holland or Gifts, which my mother-in-law found for me a few weeks after we got home. Those two books were my lifeline.

  8. What a great blog! Thank you for taking the time to make it! And thank you for adding our blog to your blog roll!

  9. one month ago our son was born. We too found out while in the NICU that Adam had Down syndrome. This post really hits home to me. The feelings are still so new and still raw.

    I have just started reading road map to Holland. (as well as blogs like yours) and Its made me realize I am not alone. And more importantly we have so much to look forward to!

    Thank you!!!!

  10. Such a great post! From one Ds Mama to another, you're doing a great job!

    Tammy and Parker

  11. I have YET to hear of a parent who likes how they were told (except one....there the doctor held and stroked the baby when telling the parents, giving over the non verbal message, that this is a child to be loved). The news is so devastating to parents, that we find it hard to accept.

  12. Love this post, love the idea of leaving gifts for new moms. My sister sent me "Roadmap" and brought the book "Gifts" to the hospital - both were so hugely helpful to me as I was starting to learn about my son's diagnosis.

  13. I feel the same way about the poem! I think my negative feelings about the poem have been keeping me from reading Roadmap since it has Holland in the title. I may try to get a hold of it and leave some copies at the hospital too. Great suggestion. And...great blog - thanks for writing.

  14. Sandra, I too was given this poem when Nathan was born and wasn't a fan but I believe that was because the timing was all wrong. I could have cared less at that point in my life. To this day, I've yet to read the Roadmap to Holland but will pick it up over the summer.

    I really have to commend your writing skills ~ I love reading well written thoughtful work.

    I'm trying to catching up on your posts! Hopefully, we'll see you next week at playgroup.
    Kandi & Nathan

  15. Oh, what a wonderful and caring and loving post...thank you for writing, and for the actions behind the writing.

    When I was working on the book, I had in my mind a woman, a new mother who'd just found out her baby had Down syndrome. I sometimes wondered if my words to her could make any difference (what are words worth?) but I wanted to try, anyway.

    Your words show me it was the right choice.


  16. Libby at Blessingsandglory.com offers a free book of Roadmap to Holland and/or Gifts for anyone with a prenatal or postnatal diagnosis of Down Syndrome.


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