Lifting a gallon of milk off the grocery store’s refrigerator shelf, I turned to put it in my cart when I came face-to-face with a nurse that I had worked with a few days before. Rosie had a toddler with her and a baby sitting in her shopping cart. Delighted to see her, and for a chance to introduce her to my daughter, Tammie, I glanced at my grade school daughter and said, “Tammie, this is the nurse I told you about. Rosie, this is my daughter, Tammie.”

They shook hands. We had a lovely visit, but soon went our separate ways as Rosie’s baby began to fuss. Rosie and Tammie were both born with TAR syndrome, causing them both to have elbow-length arms. Tammie’s hands sharply angled in, while Rosie’s did not.

On our way home from the grocery store, Tammie had many questions. The first, “Why are her hands so different than mine?” I explained that some people with TAR syndrome have surgery on their hands to ‘centralize’ them, which I suspect gives them a farther reach.

I began to tell Tammie that Rosie had seven siblings and that she had one sister who also had TAR. She and her sister never needed blood transfusions, nor surgeries to correct lower extremity deformities. My daughter wondered, “How can that be for someone with TAR?”

My explanation that evening became an often-repeated maxim, “All illnesses, syndromes and tendencies are experienced by people on a one to ten scale.” I tried to explain that what one person experiences with an illness or disability isn’t what everyone experiences.

In my mind, Rosie and her sister had TAR on the scale of maybe three or four. Tammie with all her blood transfusions and leg surgeries, had TAR on the scale of about six or seven. We also knew a boy with TAR who had hands coming out of his shoulders and was never able to walk independently. For those extra challenges I felt his experience of TAR had to be at least a nine on the scale of ten.