On our recent road trip to Cheyenne, we visited Olivet Cemetery to find the graves of my grandparents and my cousin Charla. My grandparents lived interesting lives that spanned from about 1880 to 1960. While at the cemetery, I realized how little I knew about my grandparents lives. Where did they meet? What took them from Nebraska and Kansas to Arkansas where my mother was born? What inspired them to move to Pine Bluffs, WY, then Egbert, then Cheyenne? So many questions I would ask them if I could.
I knew I was fortunate to live close to them growing up. I could walk or bike the four blocks between our houses and join my grandmother in making doughnuts or noodles. I could go out back with my grandfather to tend the vegetable and flower garden. I could eat extra homemade rolls for dessert at our Sunday dinners. Two of my grandparents died before I was born, but the two I had nearby were a treasure.
Still, it was my cousin Charla’s grave that prompted most of my thoughts that day – and still. Charla was born just three months after I was; she died a mere eleven months later. I have a picture with her in a family album, but she didn’t appear in many pictures. Charla was the daughter of my mom’s sister, and I can imagine their excitement at the prospect of having babies so close together. I wonder how Aunt Clara and Uncle Ken first reacted when they learned that Charla had Down syndrome.
When Charla was born, in the mid 1940s, it was common for doctors to advise parents of a baby with Down syndrome to not even take their baby home. It’s hard for me to imagine such a thing. Just place your newborn in a state institution and move on? Well, as the lone picture in my album attests, Charla did come home. But she didn’t stay long. According to my mom, the discussions about what to do with Charla ripped fissures in the family that never fully healed. My grandfather was adamantly against placing her in the institution. Others were torn. At some point, my aunt and uncle took Charla to the state “school” for the retarded in Lander, WY, where she died some months later.
I only learned of this when I was in my 20s, teaching a class of special education kids that included two children with Down syndrome. I was talking with my mom about the kids in my class when she said, “I thought kids with Down syndrome didn’t live long.” Well, I said, some do. It depends on how many health problems they have. If they have major heart defects, or other issues, they might not live long enough to go to school.
“Your cousin Charla had Down syndrome,” she said, then proceeded to talk about how difficult it was for the family to decide whether to keep her at home or place her in the institution. My stories about the completely charming Down’s kids in my class must really have been painful for my mom, but those two kids were, in fact, completely charming. We talked a while about how Down’s kids were faring in the late 1960s, how some did live into adulthood and needed continued support, but not unlike my other kids who’d entered school in special ed and would need support.
A few years later in my teaching career, a colleague had a baby with Down syndrome. He had major heart defects, and they opted for heart surgery to give him a better chance of thriving. He didn’t survive the surgery, but we were all saddened that he didn’t. By this time, we knew that, with a good heart, a baby with Down syndrome could life a good life.
Over the course of my life, the question of what to do about babies with Down syndrome has often surfaced in discussions about abortion and how much to invest in saving infants with serious health problems. For many years, doctors did not advise procedures such as heart surgery for infants who were clearly not going to be “normal,” and many parents agreed. Today, parents might well opt for maximum care regardless of the limitations their babies might face going forward. I’ll confess, I have mixed feelings about all of this, and I’m glad I haven’t had to face such decisions.
Prenatal genetic testing and the option of abortion have reduced the numbers of kids with Down syndrome. My feelings on this are less mixed. Again, I’m not the parent who would face the challenges of having a child who might require more parental responsibilities than normal. But not all differences are bad, and the differences of people with Down syndrome are not all onerous. I think here I’m being selfish, though. I wish my cousin Charla had lived. I wish I’d had a cousin my age. I wish my aunt hadn’t grieved every time I visited her (not openly – she was great, and perhaps it was just my grieving knowing that my cousin died so young).
We have learned, in the years since Charla was born and died, that people with Down syndrome can be happy, contributing members of society. This has been brought home most dramatically for me in the BBC series Call the Midwife, which features Daniel Laurie as the adopted son of shop-owners Violet and Fred Buckle. I love Daniel’s character Reggie, and I love the way he has been incorporated into the series. Daniel, who is not the only actor with Down syndrome, is living proof that a good life is possible for people with limitations that most of us think we couldn’t bear.
Charla, you were born at the wrong time. I wish you had lived. I really wanted to know you.