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.
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?