I put my car in reverse and looked at my wife, Jill, in the back seat, trying valiantly to stay positive. I looked at my daughter, Alexus, in the front seat. She looked like she’d just lost her best friend, but she was talking and acting like everything was fine.
I put the car in drive and realized how sad I was. How sad we all were.
Alexus recently came for a weekend visit. When it was time for her to fly to Boston, where she lives, Jill and I drove her to the airport. During the ride, I came to the conclusion that our worlds have shifted and, in a way, shattered over the past two years. My wife and daughter both tested positive for the Huntington’s gene. We try to remain optimistic, but I know that we need to be sad as well. We need to mourn the lives we could’ve had — the lives we would’ve had if the tests had come back negative.
Jill has never been a dreamer. She’s happy with pretty much whatever life gives her — except for the fact that our daughter has Huntington’s. There’s no way to find happiness in the suffering of your only daughter. There’s no bright side to Alexus’ pain. But it’s hard to say that. It’s hard to face that. It’s hard to accept that you’re sad, but we have to learn to embrace it.
Whenever we talk about Huntington’s as a family, we feel like we have to put a positive spin on the conversation. Making others comfortable has become an unconscious habit. I think we forget that it is OK to be sad. The world will keep going if we take a moment to be sad and angry about Huntington’s and its repercussions.
I’m sad I can’t make it better. I’m angry there’s no cure. I’m sad that Jill and Alexus have to struggle with the knowledge that their lives are forever altered. I’m heartbroken that I’m unable to take their sadness away, but I understand and accept that Huntington’s has become a part of who we are.
These feelings of sadness will continue, and it is normal for us to wrestle with them. But that doesn’t make things any easier.
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