What has happened to me pales in comparison to what has happened to my sister.

Nicole has Rett Syndrome, a neurodevelopmental disorder in which babies — mostly girls — may seem to develop normally but then begin to regress, losing communication skills and developing repetitive hand motions. Numerous other difficulties are also common.

My sister was born in 1966, the year an Austrian neurologist, Dr. Andreas Rett, first published his findings on Rett Syndrome. Unfortunately, nothing about Rett Syndrome was published in English language medical journals until 1983.

Throughout our childhood, Nicole’s only diagnosis was “severe and profound mental retardation.”

Nicole was 26 when I first learned about Rett Syndrome. At that time, it was said to be the leading cause of intellectual disabilities in girls. Now, it’s not certain that girls with Rett Syndrome have intellectual disabilities at all.

A girl with Rett Syndrome has an inability to use her hands or speak, making it “very difficult to make an accurate assessment of her intelligence,” says Rettsyndrome.org’s FAQ page. “Most traditional testing methods require her to use her hands and/or speech, which may be impossible for the girl with Rett.”

Wow. Think about the implications of a misdiagnosis like that. And that doesn’t even include what happened to us.

Our parents split up when I was 11 and Nicole was 9. At that time, they placed Nicole in a nursing home for handicapped children. My parents visited her at first, and even brought her to their new homes for weekends. But, gradually those visits lessened. A little more than three years after our parents split up, our father was killed by a drunk driver. Our mother then stopped visiting Nicole altogether and I got slugged if I even dared to speak my sister’s name.

I imagine our mother was dealing with feelings of guilt for not being able to care for her own child. This was before anti-discrimination laws and handicapped parking spaces and I empathize with her struggle. Even as a youth, I understood that a time would come when our mother would no longer be able to lift Nicole in and out of the bathtub.

But, my point here is to share my sister’s point of view — to the point that I can — rather than our mother’s.

I don’t remember our parents ever explaining to me why they chose to place Nicole in a nursing home. I overheard conversations between them and neighbors, so I had an inkling of what was happening and why, but no real understanding. Since our parents never explained their decision to me, it’s reasonable to assume they never explained it to Nicole, either.

So, take a look at this from Nicole’s perspective. You’re 9 years old. Suddenly and without explanation, you are sharing a room with a stranger in what looks like a hospital. You have lost your mother, your father, your sister, your dog, your cat and you home. You don’t know why and you can’t even ask anyone.

Your parents show up occasionally and you hope you will be reunited with them for good. But, each time they bring you back at the hospital and leave you there. You never know when — or if — they will come again.

I know little of my sister’s life until I turned 18, legal age. Once I reached adulthood, my mother could no longer forbid me to see my sister. (And she knew I would fight back if she tried to hit me). Though she strongly objected, I went to the nursing home where I found a mere shadow of the girl I left behind seven years earlier. Her long dark hair had been cut short. She was stiff, literally hunched over, and wearing a protective rubber helmet like wrestlers wear. Her eyes had darkened and looked empty. I held her in my arms and dissolved into tears, not even sure she knew who I was.

It was probably 15 years after our mother’s suicide in 1990 that I began to realize what Nicole had been through. By this time, Nicole had been moved to a group home. One day during a visit, a staff member and I started talking about our dad. Nicole suddenly became visibly upset. Her body was rigid, and she had her hands in her mouth. She refused to make eye contact. When the staff member or I said the word “dad,” she would scream in irritation.

My god. No one told her that our dad had died.

We explained to her what happened but she remained upset. We asked if she wanted to go to the cemetery to see his grave but she gave no indication that she did. We felt that, because of the level of discomfort she was feeling, it would be best to let it go for the time being.

Since that day, I have never asked Nicole if she wanted to see our dad’s grave. I think I was so busy with my own issues over the loss of our family that I forgot about hers.

I live in Maine now, so it’s a lot harder to get to Pittsburgh to see her than it used to be. But perhaps it’s time. Maybe she will want to see our parents’ graves. Maybe not. I should at least ask and see if I can interpret her response as a yes or a no. She deserves that much.











One thought on “Nicole’s sorrows

  1. Johanna, your story has brought tears to my eyes. I have no words to truly bring you comfort. But know you have touched my heart beyond explanation. May you find the strength and opportunity to visit your sister, if you so feel led. You and your sister remain in my thoughts and prayers. Much love, Roni


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