When McKayla told me about her disease, the conventional wisdom was that she would probably live for at least twenty more years and could possibly live for another fifty. The disease affected people at different rates and there simply wasn't enough research to predict how long we had together.
It turns out we got twelve more years together. And irony of ironies, it wasn't the Huntington's that got her.
After our wedding, we spent the next year in denial about her disease. We knew the symptoms probably wouldn't appear for several more years, so we lived from day to day, always in the moment.
The first thing we did was go to visit a lawyer. We drew up wills and a custody agreement. We assigned each other medical power of attorney and spent a lot of time, energy and money doing everything we could to become so legally entwined that we may as well have been married. It was important to both of us that the vows we took before God were also binding in an earthly sense.
If only you straight people knew how easy you have it by just signing a marriage license!
Meanwhile, our daughter grew and grew. She started walking and talking. I stopped breast feeding when Maureen began eating solid foods, and soon she started going to day care a couple of days a week. We settled into a nice domestic routine, made even nicer by the fact that we both knew that we had enough money saved up that we could both retire and live very comfortably if that's what we wanted.
But there was still something we had to come to terms with, and neither of us wanted to think about it. I always felt like I was on eggshells with the subject of McKayla's disease. I never wanted to bring it up, and neither did she.
Finally, one month we went to see her doctors and got the full scoop. We educated ourselves as best we could and sought out the best advice that was available. We joined support groups, mailing lists and discussion boards.
They physical symptoms would come first. They would start slowly, gradual involuntary jerky movements. Then they would become more frequent and spread throughout her body. She would lose weight as her body would constantly be in motion. Ever so slowly, she was going to lose control over her body.
Then her memory would start to fade. First her short-term memory. We would have to write things down. She would tell the same story over and over. Sometimes, I was going to have to give her directions three and four (or more) times.
And then it would get worse.