What Not to Pray (Unless You Really Mean It)
At one point I wished it was cancer. I’d rather die of cancer than Huntington’s Disease.
I did pretty well up until I turned 40, and suddenly the time bomb clicked to life, ticking down the seconds of my life.
Every time I choked on a glass of water, or my foot twitched in bed, I knew. It’s Coming.
My handwriting isn’t what it once was. Someone even commented upon it “You don’t write as neatly as I thought you would” and I knew. My fine-motor was already beginning to degrade. It’s Coming.
I was certain the results would be positive. Certain to my core. Every sermon, scripture and song on the radio was teeing up the shot – this is your life, girl. Either get busy living or get busy dying, but your days are numbered.
It wasn’t a life I wanted, not at all, but do we ever have a choice in the matter? My mother didn’t have a choice. HD was certainly not in her plan. Why should I be any different?
Last summer, Oceans was playing everywhere. I listened to that song over and over. Take me deeper than my soul could ever wander, let my faith become stronger….
Warning: Don’t say it if you don’t mean it. Really, don’t.
I had no idea the waters I was wading into, or just how deep I’d go. He drew me in until I had no other way back but through Him.
I have never imagined my life beyond the age of 45. Everything I’ve ever wanted to accomplish, it all had to be done in the next four years, soon to be three.
I was 21 when my mother started losing her mind. If my results were positive, my youngest would only be 10. I had two decades of my mother to remember, and yet it’s still hard to shut out the bad years and remember the good. The bad years were Just. So Bad.
How are my boys ever going to remember that I sang them Siúil A Rún every night at bedtime? How are they going to remember the piggy-back rides when they were toddlers and how I once allowed them to dip their pizza in chocolate sauce?
New Year’s Day was an ugly day. I had to get off of social media, away from the the myriad of “One Word” posts.
Prosper! Aspire! Choose! Focus!
Me? How about LIFE. I’d just like to live, thankyouverymuch. There were a lot of tears that day, and then a migraine. They have become close friends in my life, tears and migraines. Great buddies. Inseparable.
I woke up on January 2nd and decided that this is not how I want to live the next six weeks. That’s not living, that’s dying. Already. And I’m not dying. Not yet, anyway.
I’d just like to see my kids grow up. To know that I’m not going to terrorize them with the insanity that is coming in the next few years. To plan for their graduation parties, to be a part of their weddings. To spoil my grandchildren.
I’d like to take a vacation and not wonder if it’s the last time we’ll ever visit this place. I’d like to hold my seven-year-old at bedtime, snuggly-sleepy warm in my arms, and not wonder if he’ll remember this moment, or will all of the Bad Stuff yet to come scrub it from his memory.
I’ll love you forever, I’ll like you for always, as long as I’m living, my baby you’ll be….
Heck, I’d like to plan for retirement.
Living with someone with HD is like living with an alcoholic. Only, it’s not a result of their own choices, it’s not their fault at all.
You’re not supposed to be mad at someone who is ill, but yet they are angry and cruel and manipulative. How would my young sons survive, when I barely did and I was an adult when I went through all that?
What about the photos? I’m the one who is always taking the pictures, how will they know what I looked like before my face begins to twist in spasm and tics? How will they remember that I used to ride a bike, run, hike, when I’m strapped into a wheelchair so that when I flail with chorea, I don’t fling myself right out of the chair?
There was a calm in the days leading up to my results. Resignation, if not acceptance.
I had hope that they would be negative, but I did not believe in that hope. Positive results, that I had indeed inherited the Huntington’s gene, were far easier to believe in.
With a battle cry carved into my ankle, a command to myself, I dressed carefully the day of my final appointment.
I chose carefully. The Right Shoes, with which to do the Hard Things.
It is perhaps shallow, and a bit frivolous, to think that shoes imbue anything beyond a bit of trifling pleasure.
But to me, that Hard Day, they were a bit like armor. A shoring up of resolve. A summoning of courage.
She dresses in fine linen and purple gowns.
She is clothed with strength and dignity,
and she laughs without fear of the future.
Proverbs 31:22, 25 (NLT)
There were three doctors in the room, a battalion of caregivers, ready to console and counsel. For them, this was routine. They would sleep tonight regardless of the answer I was about to receive. I briefly wondered if anyone in my place ever threw up on their shoes. Searching their faces for some clue; they were all somber, a studied mask of empathy upon their faces.
I was barely seated when quickly, the geneticist turned to me and said.
“It’s good news.”
I looked at him, hearing the words but not grasping the meaning. How could my testing positive be good news?!
“You do not have the Huntington’s gene.”
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