Respond for Wounded Healing

This is my third installment of outlining approaches to bringing about wounded healing based on my experience with Duchenne. Applying the acronym C.U.R.E., I will focus on the R” in C.U.R.E.

When I first learned my grandson’s dreadful diagnosis last April, I strongly reacted emotionally. Shock to anger to sorrow … all in rapid succession.

Then, the inevitable question came to mind, “Why Hayes?”. I felt myself getting angry with God. Why ANY innocent little boy? I found Harold Kushner on Youtube as he lectured from his best selling book of 25 years ago. He surprised me by clarifying that the title to his great book was NOT “WHY Bad Things Happen to Good People” but rather “WHEN Bad Things Happen to Good People” which is an entirely different paradigm.

I insisted on knowing “WHY?”. Reading and re-reading the Book of Job in the Bible did not help me. Initially, prayer did not help me with the “WHY” question. I finally succumbed to Dr. Kushner’s conclusion that there is no answer to “WHY”? I absolutely reject the notion that “It was meant to be.” And, “It all will work out in the end” is not helpful … not when the muscular degradation of a precious child is involved.

So, I evolved to “WHEN” such nightmares occur, WHAT should we do? It turns out that was an early step towards my wounded healing.

RESPOND rather than REACT. By beginning to form a response to my grandson having Duchenne, I became energized to work the problem instead of remaining mad at it or at God. When I quit feeling anger, my heart opened up to God and the Holy Spirit actually started empowering me to deal with Duchenne in a problem-solving manner as opposed to playing the pity card.

That is when the “U” in my C.U.R.E. approach unfolded. I quit being so unsettled and started studying Duchenne as among the most serious rare diseases of young boys (mostly) instead of simply as a monster not to be understood. That is when I discovered Parent Project Muscular Dystrophy which quickly networked me and Hayes’ father into the Duchenne community of children, parents, medical researchers, pharmaceutical reps, certified hospitals, lifestyle counselors, and other stakeholders.

This networking has uplifted me. I realize that Hayes and our family are not alone in this fight and that progress is being made (slowly) towards mitigation or even a cure to Duchenne.

We have utilized the understanding and knowledge derived from networking hopefully to become a part of the solution and not be the problem.

Race. We must quicken the steps towards treatment. On January 20, the third Monday in January, America observes Martin Luther King Day. Dr. King is the only American with his own memorial day who is not a President. Worthy. He had a dream. His life efforts and death quickened passage of legislation intended to level the racial playing field in the U.S.

I have a dream … to level the playing field with Duchenne and to help others in the process with their own wounded healing, regardless of their personal disaster.

Unconventional medical research involving the human genome is raising hope. Genetic transfer technology just might be the key. Medical researchers are actually reaching into the mutated gene for repair. Unfortunately, immunological rejection and limited distribution of the wanted dystrophen protein within the mutated gene remain a problem.  Funding and focus should quicken the pace towards treatment.

Whatever massive dilemma or challenge may be facing us, these tips can be applied.

Respond vs. react. When the upset occurs, do not squelch but do get past the immediate reaction as quickly as normally possible and start framing a response.

Revert from an unsettled condition into a more uplifting and hopeful state.

Relate to the stakeholder community and build upon its knowledge base and insights.

Resources are available. Find them to quicken the learning curve and to avoid feeling alone.

Remain willing to try unconventional techniques and approaches … remaining prudent all the while, of course.

Rely on a greater force … for me, a very special rabbi over 2,000 years ago showed us what to do when bad things happen to good people.

Kindly,

Papa in Tennessee