|Cards from Franny and Flowers the Rumbles|
My daughter Dana is marrying George Goryan on June 25 at our home in Mariposa. Family and friends will gather on the hot June evening, enjoy outdoor games, drinks, and good food. It is my personal goal to make it to their wedding.
The two months will not be easy. The Isotope Queen is using non-invasive ventilation much of the time to help me breathe. My son Evan is taking Family Medical leave to help out with the never-ending care chores. We have hired a great new caregiver, Carol, who massages my legs, gives me showers, and prepares blended soups.
My care team is expanding. A home health team will look in and help out weekly. Soon I will transition to hospice care.
My journey is rounding third base and heading for home.
ALS patients die of exhaustion. As your breathing muscles weaken, breaths are shallow, then non-existent. You can’t chew or swallow. You lose all that weight you spent a lifetime accumulating.
Mentally, your days shrink. The layers of life are peeled back leaving only what is fundamental, basic, and important. Work is no longer center stage. Survival is what’s on my to do list.
Eventually, it becomes Your Time. Your Time to accept what people have accepted for time immemorial.
And it’s OK.
I am surrounded by love—loving people, family, friends near and far. I couldn’t be more fortunate.
I am starting to say Goodbye. At 6 years post diagnosis, I have had the luxury to do many things, share laughs and meals. It’s been a great journey.
|Evan, Chris, Steelie, Annalise, 2022|
This past week, Science Brother Andrew Steele AKA Steelie visited with his daughter Annalise. We told stories of field work in the Arctic. Laughed.
And cried when we hugged and said Goodbye.
It will be an emotional couple of months—but it is my goal to find beauty in every day. Today, for example Science Brother Doug Rumble and his wife Karen sent (yet another) bouquet of flowers. And my Old Pal Famous Franny sent 10 cards that I opened one a day for the past few days. What great folks.
I have finished working on a Memory Book for my Moorestown New Jersey class of 1970. It’s 120 pages of photos, memories and life stories from more than half our class 52 years ago. I have enjoyed this immensely.
Dana and George are coming nightly to help Chris get me safely in bed.
I am lucky and blessed in so many ways. And determined to go forward!