Wounded Healing Through Understanding

In my last blog article, posted January 13th, we covered “C” in my acronym C.U.R.E. as we endeavor to establish a healing process for effectively dealing with our emotional wounds caused by Duchenne. Here, I will tackle “U”.

U:  After my initial upset upon hearing the term “Duchenne” for the first time in my life last April transformed from shock to anger to tears to emotional exhaustion, I picked myself up and hit the web, the library, and some book material to learn what I could about the monster. It was difficult for me to understand and  believe that 1:3,500 boys (mostly) are born with Duchenne in the world each year. Nearly 300,000 boys (mostly) in the world, of those about 15,000 in the U.S., live with Duchenne at this time. The cure rate remains zero … totally unsatisfactory.  

The rapid progression of the disease is unsettling. This monster is unbelievably cruel. It is difficult to understand but I keep studying in search of hope found in a lab, a clinical trial, a pharmaceutical finding, a support group, prayer and even Hayes himself.

Hayes’ fun loving and wonderful spirit keep us uplifted. He is so uniquely bright, especially in Science and Math, that we sometimes think out loud just how marvelous it would be if Hayes becomes a member of a medical science team that uncovers a cure to Duchenne.

The family undertook a careful assessment of the various clinical trials going on out there. We found the standard of care utilizing steroids to be a band-aid approach, at least for now, and went the unconventional route of pursuing a non-steroidal based clinical trial at  Cincinnati Children’s Hospital. There are many good choices in the U.S. We just chose to be a bit unconventional.  

I personally have undertaken a review of my retirement plan and have decided there will be no retirement for me, at least for now. Taking on Duchenne is now my second job and my “mature years” Life advocacy.

Where are the lessons here, regardless of disaster?

Upon learning upsetting news, unsettledness is normal, at least for a while. However, we cannot fall into the muck of a pity party.

Undertake a focused effort to understand cause, effect, and options.

Utilize all resources at your disposal to figure out a plan for action.

Unravel the overwhelming specter of the situation with a healthy dose of curiosity, a growing knowledge of the situation, constant peer support, and answering a call to action. Do not wait for someone else to undo the bad, rather, go about it yourself.

Unconventional approaches should not be ignored. Sometimes taking the less traveled road or approving a more uncertain technique reaps the greatest return. Just do not be foolish about the choices.

Unite with other similarly affected people because there is strength in numbers and comfort amongst other caring folks.

U can make a difference in the fight to end Duchenne.

Kindly,

Papa in Tennessee