Escape

Finally, our family was able to take a vacation last week, to the beach and surf of Gulf Shores. Familiar playground from years past.

Newly constructed house, with lagoon, pool and dock on one side and a convenient path to the beach across the roadway. Weather was perfect, all week.

Hayes had a good time, despite DMD. Met another 6 year old at the walk-in pool who was fun. Spent quality time on the dock that extended into the bay. Discovered a small private beach where the sand turned green about 3 inches deep due to algae from local grasses. My son, Uncle Bubba, entertained Hayes essentially the entire time.

Took a pontoon ride into bay the last full day the family was together. Discovered what it is like to be involved in an actual rip tide … sort of scary.

These family trips with Hayes are priceless. It will not be long, perhaps another 2-3 years, before he will be unable to ambulate normally and enjoy normal activities, especially on a challenging surface such as sand and surf. We must make the most of each blessed outing.

Took over 11 hours to travel back home when the trip normally would take 7 hours. Vacationers from Destin and Gulf Shores converged on I-65 North which caused a rate of travel of 10-20 mph for significant distances. Miserable but for seeing so many license tags from so many different states all across America.

Odd. Most Americans are escaping back to a new normal while the new normal for Hayes and similarly situated DMD children further denies them an escape from the dream killer.

My hope is that ever improving medical science and significant funding that sustains the lab work and associated clinical trials will help us escape the tightening grip of Duchenne Muscular Dystrophy. May it become so.

Kindly yours,

Papa in Tennessee