After I’m done addressing whatever gynecological problem she came in for, she said, “I have to ask you one more question. It’s personal.” My assistant left and she asked, “Your baby, what happened?”
She had read the sign posted at the front desk. It wasn’t the question I was expecting. When a patient tells me they have a personal question, I prepare myself to address things like concerns about how their vagina looks or issues with sex, so this question was a pleasant departure. I was happy to answer. I began with her Down Syndrome diagnosis and our decision to continue. I explained the low fluid and what it meant for her kidneys and lungs. I told of her birth at thirty-six weeks and her death six hours later from lungs that were just too small.
She listened patiently, attentively and when I was done she told her own story. The story of her boys, identical twins, who had something called Fragile X. There wasn’t a term for the genetic disease that causes mental retardation when they were born; it wasn’t until they were twenty-seven that their sister heard about a study that gave their condition a name. The family soon learned that many of them were carriers of the trait and some even had trait-related symptoms.
I had asked earlier in the visit if she was in a relationship. It was how I eased into the next question ascertaining whether she was sexually active, a question I wanted address in a respectful way to the woman in her eighties sitting in front of me. She told me she had been widowed two years before. Now when talking of her sons, she said one of them died a few months before her husband. He had been to camp not long before he died. It was a camp he loved and came home proudly telling stories of his accomplishments. After he died a counselor for that adult camp wrote her and told her of how her son would make everybody laugh. Her eyes glowed behind a brim of tears as she told me this.
She lost her husband and her son in the same year and she told me of both during her visit. I could see that both deaths caused her sadness, but it was the telling of the story of her son that brought her emotions to the surface.
Whether it be a new mom in her thirties or a woman in her eighties who was gifted decades with her child, whether that child was the picture of health and taken suddenly or she was sick with a poor prognosis, this woman was living proof that losing a child under any circumstance is a complicated and long lasting grief.
I often worry that sharing Mabel’s Down Syndrome diagnosis will change people’s sympathy. That somehow people will value her less because she was given an extra chromosome. That they think I won’t be as sad because she wasn’t “perfect.” No one has actually said these things or even given me the impression that they think such thoughts, but I have already prepared my response. I was ready to love her even more because of her Down Syndrome. A part of me felt proud that I would raise a child with special needs because I was going to blow up so many stereotypes by showing the world what she could do and how loveable she would be. I didn’t realize at the time that she didn’t need to live to do just that. I wish she were here so that she could witness how far she is reaching.
In the examine room, Mabel allowed this woman to share the story of her son. To let her tell one person how wonderful it was to raise a child with special needs. To give her the opportunity to comfort another bereaved mother. To affirm for both herself and for me that no mother should have to bury her child.