Butterfly Kisses: A Huntington's Disease Story

I remember the little kisses on the cheek that my girls would give me when tucking them in at night. They were light and made a slightly airy sound and kind of tickled. They were sweet. My wife, Sheila, called them "baby girl kisses" and would tease me a bit with one once in awhile when turning in for the night. While it was not exactly what I was looking for, the memory of them stuck with me like anything that was sweet and warm would.


Recently, Sheila was hospitalized with yet another infection and dehydration. It was serious, but then every hospitalization brings up the possibility that this may be the end for her. She is in her 26th year of Huntington's Disease and the constant trips to the hospital have long become old news, but yet, she perseveres. Her delight in life is evident to me by the signs that she gives. She is mostly non-vocal, choosing only to speak when it matters to her. She seldom moves except when someone enters the room and her eyes follow them, wondering what they are going to do.

However, what is disturbing about her condition is how some medical professionals deal with it. Every time she goes to the hospital there is a barrage of calls from doctors, usually a new doctor each day wanting to know if there is a DNR placed on her. There isn't since she told me that she did not want one. I respect her wishes but I'm made to feel as if I'm doing the wrong thing. But, the last doctor made me pause and think that maybe I was taking her wishes too far.

He told me that they had performed a brain scan on her and that there wasn't much left of her brain so the Sheila that I always knew was no longer there and that maybe, just maybe I was doing something that I wanted and not what she wanted.

Now, here's the thing...I respect medical professionals. Don't get me wrong, I don't believe that all medical professionals should be in the medical field, but as a rule, most are wonderful at what they do, and they tend to be our only hope when things start crashing down around us in regards to our health issues.

Sheila made it through that crisis and in a few days was back at the Wolfville Nursing Home in tip top shape and I was able to visit with her. It was a nice visit and I was able to do her fingernails all fancy smancy and she seemed very pleased with them. I like to do them with a couple of matching colors, with jeweled stickers which I catch her admiring. This is the Sheila I knew, and the Sheila I know now. They are the same. She was always a girly girl and still is.

But, it was when I was leaving that I knew that the Sheila from many years ago when we were raising children together was very much there. That the part of her brain that kept who she was, the essence of her, was fully intact.

I told her that I was leaving as I had some errands to do and bent over her to give her a kiss on the lips and told her I loved her. Her eyes were very much focused on mine but her reaction to the kiss was not really involved. This is not really an issue since she really didn't have time to react. However, I asked her if she wanted to give me a kiss on the cheek and bent in to allow this. It took maybe ten seconds but there it was, with the same sound it used to make...a 'baby girl kiss' and her eyes smiled when I backed away. There she was, with that sparkle in her eyes still bright, teasing me with one of those butterfly kisses. The sweetest kiss anyone could receive.

Never, never, never, let anyone tell you that the person you love and care about is no longer there.

They are there! And sometimes they are able to let you know they still love you.

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