When we set up At Her Own Pace this past summer, I struggled over whether this was a self-serving or selfless venture. After all, we had quit most forms of social media years before. Did we really want back in?
There were a ton of blogs out there already and even more impromptu snapshots of the lives of families with a child or sibling with Down syndrome. But what hadn’t fully sunk in until now was that we were the minority, not only because our daughter is 1 of only 200k+ people living with DS in the United States, but also because my husband and I are in the bottom quartile of couples who received a prenatal DS diagnosis and kept the baby.
Yes, about 75% of couples who screen positive for DS during prenatal testing terminate their pregnancies, according to an article published in the American Journal of Medical Genetics, Part A in 2015.1 After hearing a heartbeat, nearly 75% of couples decide the life they created doesn’t deserve to live, which translates to about 3,100 babies with DS terminated every year in our country alone. After dreaming for weeks and even months leading up to conception about their giggling, drooling baby boy or girl, 75% of couples feel like their dreams have been dashed simply because they think their baby won’t be picture perfect. You can let that sink in for a minute.
I am adamantly opposed to taking away a woman’s right to choose how she will handle her pregnancy and believe the decision is between her and God; forcing a decision by law or shame doesn’t teach any lesson at all and is self-defeating to our community’s cause. But it would be our failing if we did not expose as many people as possible to the joys of raising Hope and how truly average and beautiful our family is.
So if we’re not so special, why share our story? To show exactly that. We have a few extra activities during the week (i.e., therapy appointments), but in time, every parent is going to become a chauffeur for play dates and soccer practice and music lessons. Hope just started her extracurriculars on the early side.
At Her Own Pace isn’t as cut and dried as “self-serving” or “selfless.” Sharing Hope’s story is merely our small drop-in-the-ocean way of showing future parents, grandparents, aunts, uncles, cousins, siblings, and friends that a life with DS is as exquisite a gift as one without.
1de Graaf G, Buckley F, Skotko BG. Estimates of live births, natural losses, and elective terminations with Down syndrome in the United States. Am J Med Genet Part A. 2015;167(4):756-767. doi: 10.1002/ajmg.a.37001.