By Dawn Graczyk
Teach us to number our days… Psalm 90:12
Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. James 4:14
How Will I Die?
It started with a question from my 16-year-old daughter, as she was hooked up to another machine designed to keep her lungs clear.
“Mom, how will I die?” She said. “So many machines and so much time on treatments; this doesn’t feel like living.” She persisted, “How will I die?”
No parent should have to answer this question, and I was not prepared. I should have been. We’ve been watching this disease steal from us for so long. I should have had a prepared answer, but words failed me.
I contacted her doctor, expecting something similar to what I told my daughter. They usually say, “Nobody knows when they will die. One day at a time. Enjoy where you are now.…” How I’ve hated those answers.
It’s like watching someone rob your home, one item at a time and being told by the police. “We don’t know when they will stop. Just be grateful for what they don’t take. Here’s a ‘Choose Joy’ mug and a cold coffee.”
Embracing Faith and Life in Tragedy
Looking back on the last couple years that have gone as a vapor on a breeze, I’ve had moments of embracing life, understanding its brevity as I sat by a child’s bedside. I wish I could say this led me to “live each day as my last,” but it hasn’t. The world still beckons.
I worry about finances. I stress about a clean house, spending hours trying to attain it then watch the kids tear it apart. I fight with insurance. I nag and annoy doctors with my determination and stubbornness (one actually told me I was “the most stubborn person he knew” and “from time to time quite annoying”).
Despite all of that, I have faith in a God who is bigger and greater and loves us more than I can imagine.
Time is Short. How Will We Live?
The doctor told me, “If she is ready, and she wants to know, I can tell her how she will die.”
This stopped me in my tracks.
My daughter had changed her mind and said she didn’t want to know any longer. But now I was being told I could. I could know.
Having graduated college as a nurse, having held hands with the dying, I had some idea in my head of what the end would look like. I had mentioned it to doctors who insisted we had “many” years and that “this disease progresses slowly.”
Only, now that a doctor has really taken time to observe, it is clear it isn’t moving slowly. In part, because there seems to be another genetic, neurologic disorder affecting all six kids, accelerating the disease process. We know this is not, and will not, look like typical Friedreich’s Ataxia, nor do we likely have “many” years.
I did want to know, and I shed many tears as we talked. Then I pulled myself up and asked myself, “Well, what are you going to do about it?”