Lyra's Latests

A Year After a Painful Week

It has been a year since I wrote “A Painful Week in the Down Syndrome Community,” about three toddlers who died. Two left suddenly: a boy who contracted meningitis, unrelated to his Down syndrome, and a girl who suffered complications from a second heart surgery. Both of their families have created non-profits in honor of their children, T21 Ryder’s Foundation and Fiona’s Hope Totes. The third baby, Annie Wojtowicz, died slowly of heart failure in the arms of her family.

11699b0256fc7c39525a3d41267d538aI learned of Annie two weeks before she died while I was preparing to travel in Europe with my eldest son. I cried every day as I watched, via Facebook, this small girl grow weaker, her face more swollen, her eyelids red and puffy. My children asked me why I kept returning to Annie’s Facebook page when it made me so sad, they told me to stop, but I couldn’t. In her and her family I saw Lyra and our family, two daughters with Down syndrome born months apart, both with dual diagnoses, but only one of which was fatal. Annie died a year ago today and her family has shared their grief with the world on her page, Annie Golden Heart. In the days after Annie died the page was taken down, but then it returned and many people, including myself, continue to follow Annie’s family. As I traveled Spain with my son, I carried with me these three families while on Annie’s page I saw her funeral, her freshly covered grave, the unbearable sorrow in her parents’ eyes. I lit candles at every La Pieta station we found at every church we visited.

On Father’s Day 2014, Ryder and Fiona were only days gone while Annie had but three days left to live. The day before, I cashiered at World Market, where I work a handful of hours each week. It was busy, as it often is the day before a holiday, with people buying last-minute gifts and I felt cheerfully distracted from the sorrowful week. Then a woman my age bought a Father’s Day card with a photo of a child’s tiny bare feet atop a pair of leather oxfords, clearly dancing with her daddy. Tears suddenly rolled down my cheeks.

“I’m so sorry,” I said to the customer. “My daughter has Down syndrome and there have been babies her age who have died this week. Your card makes me think of their families.” People who have a relative with Down syndrome often speak of the uncanny coincidences that are seemingly commonplace in this community.

“I had a sister with Down syndrome who died when she was a baby because they couldn’t fix her heart back then,” said the customer as she held my eyes with her own. “My parents never got over losing her.”

Grief is a foreign country that makes citizens of all who travel there. Only previous visitors can fully understand the experience of those who find themselves suddenly dropped in the place that changes everything forever. While the only way through grief is to grieve, no two journeys are the same. But often the loss of a child is described as the most intense grief. The natural order calls for children to bury their parents, not for parents to bury their children.

In the year since these three children died all in one week, several other babies have gone too. The stories of children succumbing, often to heart or respiratory conditions, are shared and then these families disappear from the closed Facebook groups concerning Down syndrome. Our pediatrician, Dr. M., whose own daughter has Down syndrome, gave me a big hug in her office last summer. “I can’t do Facebook groups because I see so much loss just practicing medicine. We can each handle only so much.” Annie’s family continues to openly share their process and in so doing are, for me at least, something of a proxy for all those who have lost a child with Down syndrome this past year. Her parents and sisters regularly visit and decorate her gravesite and when the groundskeepers clear off the toys and tchotchkes, it exacerbates the pain of having had Annie herself taken from them. It seems to me that cemeteries should have special allowances for the decorating of children’s graves, particularly in the first year after the child has died.

Last August bioethicist Richard Dawkins tweeted to an expectant mother who asked him what she should do if her fetus was diagnosed with Down syndrome, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He later claimed his position was humane as seeking to avoid suffering. The response was terrific. Articles appeared in places like the New York Times questioning the use of the term “suffering” as it relates to having a child with Down syndrome given the significant scientific research that proves just the opposite, something I, too, wrote about in “What Suffering? The Down Syndrome Advantage.” People with Down syndrome are overwhelmingly happy with their lives, their parents’ marriages are stronger than the national average (based upon divorce rates) and most siblings cite having a brother or sister with Down syndrome as a highly positive experience.

Annie’s family has observably suffered. The other families who have lost children with Down syndrome understandably, if not privately, have suffered too. At times, Annie’s father has posted a depth of suffering that is concerning. Suffering that is so great because the love is so deep.

Today, it turns out, is also an anniversary of a different kind. It is the fifth birthday of a little boy with Down syndrome in our local community. In a post that includes several pictures of the two of them together, his father writes, “Thanks for helping find my why, buddy!”

With any child comes the risk of unimagined suffering. But also the greater likelihood of immeasurable love and joy.