I will never forget the day I received a phone call that my biological father lost his battle with the horrible and rare Huntington’s disease. It’s a wretched fatal genetic disease that every child of a carrier has a 50/50 chance of inheriting. It has no cure. It is best described as having ALS, Alzheimer’s, and Parkinson’s disease—simultaneously. Once the symptoms appear in mid-adulthood, you have about 10-15 years to live.
My father was in and out of my life because of his decline and battle with the disease. We received that knee-weakening phone call just days before my high school graduation and less than two years later, I married my high school sweetheart. We laid a white rose on the altar in memory of my dad, but I couldn’t help but wonder how different things would be today if the disease was not part of his life.
Losing my dad at this age left me doing a lot of reflection in my 20s.
A lot of grieving for something I would never have and a relationship I would never know. I want to turn back time and be there holding his hand when he took his last breath. I want to turn back time and not be afraid of his pain or of this disease. I want to tell him I love him again and hug him whilst he struggled to breathe and eat via a feeding tube. His symptoms overtook his 30s.
As I am now approaching my 30th birthday—I have two children and am considering a third—I lie awake at night, trying to choke back the tears as I beg God that I don’t miss seeing the milestones in my children’s lives.
I want to be there when my son has his heart broken from the girl he gives it to first. I want to give him a bear hug and the good old “there are more fish in the sea” spiel.
I want to be at my daughter’s ballet recital without the side effects and physical changes that HD brings. I will never forget the way the neighbor kids made fun of my dad when we stayed with him when I was younger. “Why does your dad have a three-wheeled bike? Your dad is so weird.” Why are kids so mean? Better yet, how can parents educate their children on how to treat others who are different and struggling?
I want to go prom dress shopping with my daughter and tell her she is the most beautiful girl in the world. I want the tears to graze my cheek as I see her beauty radiate from her heart in the way she treats others.
I want to be the loud and obnoxious mom at my son’s baseball games as I squeal “That’s my baby!” when he hits his first home run.
I want to help my children tour colleges and consider all the different options to see their dreams come to fruition. Recording artist, military officer, counselor, chef, teacher, firefighter, nurse, whatever their hearts so desire—I believe in them and want to cheer them on.
I want to encourage my son to try out for American Idol if that’s what his heart so desires. I don’t want to miss a single coffee shop acoustic performance if that’s what he does to kickstart his music career.
I want to have a dance party in the kitchen when my children receive a phone call that they landed their first job—one they were really excited about.
I want to be there to encourage them when they bomb a test even though they studied hard and to tell them never to give up.
I want to be there for the midnight conversations when they ask questions about God, faith, how to help someone in need, or who they should marry.
I want to see their faces on the day they marry the love of their life.
I want to be there when they creatively announce their first child is on the way. I plan to be up because I cannot contain my excitement, hugging their necks before they even have a chance to finish telling us their good news.
I don’t want my children to wonder if they have this horrible disease. I don’t want them to question getting married or starting a family because of the impact of Huntington’s disease. It’s brutal.
Huntington’s disease has taught me a lot of things. It has challenged my faith, left mascara-stained tears on my cheeks for hours, and left me curled up in a chair too many times to name because I have some big decisions to make regarding testing and plans.
One thing I DO know . . . my children will know their mom loves them regardless of any medical diagnosis.
My children will know their parents are their biggest cheerleaders—today and forever.
My body may tighten and weaken every time I think about the possibilities the future may hold; however, I do know we cannot let what-ifs change the way we live and love right now.
I pray I will be dancing to some cheesy, country song with my son on his wedding day and helping my daughter zip up her beautiful white gown when she marries the love of her life. For now, I will be screaming “That’s my baby!” in the stands at t-ball games and cheering them on as they build Play-Doh towers and conquer their fear of sliding down the giant slide at the playground.
May we all let our love live louder and larger than our fears for the future.