Wasted Time

The band Eagles’ 1976 hit song, Wasted Time, soulfully examines how relationships that do not work out are not necessarily a waste of time. We can learn from each relationship, good and bad.

I call that relational wisdom … discernment that grows out of Life’s experiences.

As for Duchenne, that dream killing monster is an exceedingly painful experience for our family as we watch our wonderful grandson increasingly show effects of the creeping weakness.

At the same time, we are observing a pandemic of once in a lifetime proportions that is infecting or killing many tens of thousands, and scaring tens of millions, of folks across the world, including in our always resilient Volunteer state.

Questioning God on the reason for such inexplicable hurt always leads me back to His unconditional Grace as exemplified by His Son’s life lessons, death and resurrection which, when acknowledged, always heals my soul and diverts my attention from the “Why? question to a much more productive “What do I do now?” perspective.

Whether we search for mitigating treatments for COVID-19 or Duchenne Muscular Dystrophy or other horrible rare diseases, let’s encourage our leaders, governmental agencies, and lab researchers to pick up the pace to find mitigating treatments as soon as possible before tens of thousands of people die by the time solutions are found.

What can you and I personally do to help avert such a tragedy in the making, whether we are talking about Duchenne Muscular Dystrophy or the COVID-19 virus?

Let’s not waste valuable time to work smarter and not just harder to end these plagues.  

Kindly in Tennessee,

Papa 

Coronavirus 19 Will Pass

COVID-19. How best do we respond? 

Cable news, the government/medical alerts, and daily conversation are giving us context and, to a lesser degree, options. Nonetheless, public anxiety is palpable.  Tip: Faith and hope help.

Now, for Duchenne Muscular Dystrophy. Not new. Not short-term. Not fair. About 3,500 new children, mostly boys, born in the world each year have lethal Duchenne. There are thousands of young American youngsters declining with Duchenne. So, what’s the point?

Within the last three days, the FDA has fast tracked approval of test kits for COVID-19. Less than 3 days! Why so fast? A national emergency.

 Why can we not have Duchenne declared to be a national health emergency? So many young children are declining from a sad progression of clumsiness, to hip weakness, to loss of motor skills, to loss of legs, to loss of arms, to muscle paralysis, to increasingly sophisticated wheelchairs, to breathing machines, to cardiac support systems, to death … typically over a miserable 20-25 year lifetime.

Why is that sequence of horror also not a national health emergency in America? Simply does not make sense.

 A call to arms… to disease control/medical policy makers, concerned lawmakers and citizens, medical providers, researchers, and donors of the cause to end Duchenne … let’s fast track a cure to Duchenne! It does not need to be a shortened Life sentence for innocent children.

Kindly,

Papa of Tennessee

Precious Grandchildren

For months, I have been posting articles on my blog www.rallyforhayescom. My five year old grandson has Duchenne Muscular Dystrophy which you can easily find to be a fatal muscle disintegrating disease mostly of young boys that affects over 3,500 births in the world each year. I aim to help end Duchenne in his lifetime.

Meanwhile, I must not lose sight of the fact that I and other Duchenne families have other absolutely precious grandchildren who are not affected directly by Duchenne. Why should they suffer from our personal attention and emotional dismay over this monster just because they are not directly dealing with it. They should not.

Olivia is my precious and beautiful granddaughter from my youngest daughter. She is absolutely adorable and presumably healthy. Mischievous, independent, perky, and beautiful … like her cousin Hayes.

Olivia, Papa just wants you to know that our love and gratitude for our grandchildren is deep and equal. Sometimes, we adults get focused on a negative in our lives that, upon reflection, should be considered an overall positive for all of the family. Maternal grandmother Memes and I love you and your parents, sweety, and your love for cousin Hayes is and will be so important to all of us for years to come. 

Love,

Papa in Tennessee

Field Trip

Some of us remember field trips back during early school years. Adventure. Discovery. Change of pace, fun and, of course, a day to miss school!

Our neighborhood is blessed with a large open field in the heart of our community. Its constant use includes pleasant walks and bench swings with family members, outdoor activities and exercise, kite flying, and occasional neighborhood gatherings. 

The field has become a weekly respite from Duchenne for our family. Grandson Hayes and his mom come over, we play games and dine together with my son Jonathan who is a wonderful uncle. Three dogs are also in the mix. Then, we venture over to the nearby field with the assistance of a three-wheeler to assist a muscle weakened Hayes.

I have previously written of the great interest and joy my grandson demonstrates with Space and Rocketry. He loves pretending his three-wheeler is a rocket ship. Jonathan jogs him as Grandson cheers and laughs as they make their way to destinations that Hayes requests such as the giant star Betelgeuse or to Alpha Centauri B to look for new planets. (What youngster under five knows that stuff?)

Occasionally, I feel sad upon seeing other young boys playing in the field, running wildly, kicking or pitching a ball… knowing Hayes may not ever be able to participate. The precious time we spend on that field sets a stage for a life drama that both pains and warms the heart at the same time.

The field represents a special place where we discover and re-discover how fresh air and open spaces can be so good for the body and soul. The change of pace is emotionally rejuvenating. 

Many thanks to the neighborhood developers who planned and allowed for the open green space. Our community and our hearts benefit from such forward thinking. We need more open green spaces.

Grandson Hayes and our family will vigorously continue to pursue our field of dreams … to end Duchenne. Those who read this blog are most certainly always encouraged to join our pursuit.

Kindly,

Papa in Tennessee

Space Shot

I just celebrated another birthday on February 9th. My greatest gift was our family gathering. Grandson Hayes was a delight, as usual.

February 7th was my father’s birthday. He would be 95 years old if living today. Dad was wise, resourceful, and solid as a rock.

As an eminent Mechanical Engineer who led Materials Testing at a world class laboratory in Birmingham for over 30 years, Dad along with others who listed NASA, the Jet Propulsion Lab, Redstone Arsenal, and the U.S. Department of Defense as clients helped put Man on the Moon and kept the former Soviet Union’s communist leaders from incinerating us.

Grandson Hayes enjoys Rocketry and Space. For my birthday, he gave me a framed hand-painting created by him with help from his mother of a USA rocket blazing towards the stars with the inscription, “Happy Birthday, Papa. Love you to the Moon!”

That masterpiece now sits in my office, above all other books and files. His work of art lifts my spirits just like Dad’s materials testing helped lift Man to the Moon.

Now, we just need to make a space shot at ending Duchenne. Tough task. However, it should be as achievable as our having safely delivered and returned fellow Americans to and from another heavenly body.

Thank you, Grandson, for your very wonderful gift!

Kindly,

Papa in Tennessee

Time Is Muscle

Just saw a television commercial on heart attack prevention. The emphasis was on taking quick action as soon as cardiac trouble is detected. The tagline at the end was “Time is Muscle”. True, the heart is a magnificent but vulnerable muscle.

Duchenne Muscular Dystrophy creates a lethal vulnerability for 1 out of every 3,500 babies (mostly boys) born in the world each year. Over 40,000 American young people and more than 200,000 across the globe suffer from Duchenne.

Duchenne is a rare genetic disease that manifests as dramatic body muscle deterioration and damage for young boys (and a few girls) since the X chromosome is implicated. During early cellular development in the womb, a muscle building protein called “dystrophen” fails to reach its critical destination in the chromosome; thus, muscle fiber building and protection is not achieved. This is a very complicated genetic mutation.

It is necessarily a death sentence, at least up to now. The deterioration over 15-20 years is a torture sentence. This monster is absolutely horrible and causes not only damage to muscles but also irreparable injury to the happiness, security and future of Duchenne families. It is an evil far too powerful.

Thank goodness, advances in cardiac and respiratory care are increasing life expectancy of afflicted young people. Who knows, Duchenne children such as my lovable grandson Hayes may grow to early middle years in which event he may have the opportunity (which we sometimes take for granted) to attain an education, become employed, get married, and raise children, at least for awhile.

Make no mistake, time is critical. Duchenne children steadfastly grow weaker. Each weekend, I look at my beloved grandson only to experience remorse that he is weaker this weekend than last weekend, and so it will be going forward. The monster inexhorbantly progresses without mercy.

It’s past time to turn the tables. Let’s do our homework and figure out a way to help to end Duchenne.

We must be very intentional to end Duchenne as soon as we can. Time is muscle.

Kindly yours,

Papa in Tennessee

I Like This Place

Super Bowl Sunday. So much anticipation. Regardless of which team wins the contest, multitudes of gatherings of sports fans have enjoyed the day, wherever they may have partied.

Then, there is my grandson Hayes, with Duchenne Muscular Dystrophy. He had a grand day, too. We gathered at our house in Franklin, played cards, ramped up music, and exchanged a lot of knock-knock jokes. Simple love is the best. Especially, when it is storge love – a natural and instinctive love among closest family.

It got better. We hiked to the nearby field by our home with our three dogs which soon became four. Owners chatted. Hayes kicked a soccer ball. The afternoon was sunny and bright. Quality time.

Upon return home, we feasted and played some more music. It became time for Hayes to go home before the game.

As he reached his mom’s car, Hayes said, “I like this place”, referring to our home. I like our place as well. It is a home instead of a house.

An appreciation of the little things sure does soften a family’s pain of a child’s dreadful disease. Our game day gathering may have been a simple episode but its testament is huge.

Cultivate a special place of joy and nurturing for those whom we love the most, and monsters will become irrelevant, at least for awhile.

Kindly,

Papa in Tennessee

When I Grow Up

My four year old grandson Hayes is extraordinarily loving and empathetic. His truly special relationships with all four of his grandparents and the mutual love and joy we share with him creates warm moments worthy of reflection.

Earlier this week, his grandmother “Memes” (my wife) who absolutely adores Hayes as we all do, watched Hayes at his home while his mom went on some well deserved personal errands.

There came a point as they were playing when Hayes started asking questions about where he came from, where did his mom come from, how did our family grow together, etc. Out of the blue, Hayes said, “When I grow up, I am getting married and having kids to have fun with.” Gut punch time.

Upon hearing that heart of hearts reflection from such a loving child with Duchenne Muscular Dystrophy, I wept, then prayed. My gut continued to hurt until bedtime. I love that young boy so much.

He is so empathetic and discerning at such a young age. His view of the future, indeed, is my most profound dream… may it become so.

Kindly,

Papa in Tennessee

A Process for Wounded Healing

How in the world am I supposed NOT to feel overwhelmed about my adorable grandson’s fate with Duchenne Muscular Dystrophy? How should other families and caregivers effectively deal with rare and fatal or severely debilitating diseases that are nothing less than a true monster in our lives?

Wounded healing: With what seems to be a dagger in the heart, one nonetheless perseveres and helps all involved within the family and pained community to look and act forwardly, in hope, prayer and action that promotes a good outcome.

Wounded healing is not easy in the face of rare and lethal or debilitating diseases that show no mercy for our loved ones. For me, wounded healing is a process. The more I follow a process of healing and helping, the less my emotions control me.

To begin, upon learning the bad news, vent for awhile and allow raw emotions to take over. Purge your body and soul of any sense of unfairness or guilt. Just be careful not to hurt yourself in the early stages of shock and anger.

Then, collect yourself and begin the process of collaborating with others inside and outside the pained community to collect useful information and learn as much as you can about the monster adversely affecting your pained community. Those collaborators will be the same people with whom you will celebrate later upon learning of hopeful developments.

Get involved. Attend meetings and seminars. Read. Learn. Have personal time with others who are a bit further down the road than you. Just be a good listener. Others more experienced in the pained community will be eager to share their inner most thoughts with you as to the successful and not so successful steps they took in the early stages before embarking on their wounded healing.

Pray. Meditate. Pray. Meditate. Whatever quiet time gives you Peace, protect it like your personal safe harbor. The well intended words of others, although appreciated, will not come close to the Truth and wise insights you personally discern from within your own mind and soul. Trust your instincts for believing Good will do fierce battle with the monster.

Understand the monster. Figure out as best as you can why the monster even showed up in the first place and what others in the pained community have been doing about it.  You will find wasted effort. But, you also will find very dedicated people and organizations that are making a difference for the Good. Join hands with those difference-makers and become a part of the solution instead of being sucked up onto the problem without any action plan whatsoever.

Reaction is short term. Develop a measured response to how best you will interact with the pained community to fight the monster. For some, it is money. For others, it is shining a bright light on the medical science. Yet, again, for others, it is simply being empathetic as a good listener and evocative questioner. Ask the tough questions. Confirm the real deal as to why the monster wreaks havoc much too freely.

Then, attack. With a plan that makes sense to you. Make a difference. Figure out where you fit into the massive problem afflicting the pained community, and robustly move forward while holding hands with others equally motivated as you.

During this process, do not lose sight of the actual sufferer, the young boy (usually) with Duchenne, as an example. Love the child. Laugh with the child. Keep the child’s mind alert and heart joyful. Enjoy every good moment and be prepared for the bad moments. Again, respond with your process and avoid reacting to the monster.

Does this methodical approach work? Yes, absolutely. I know that for a personal fact. Without such a process, I would not be able to write these blog articles at www.rallyforhayes.com. Rather, I would be paralyzed with fear and sorrow.  Deny the monster the satisfaction of inflicting such fear and sorrow. To the contrary, shove aside the negative baggage and robustly move forward with your own personal process intended to energize healing, even though we may be wounded at the time.

Take nothing for granted. Assume some control, at least some direction, with respect to managing your own wounded healing. At least, in that way, the monster will know it has been in a real fight and that it should not take us for granted. Cures are coming. Let our processes pave the way for those cures to cascade like a glistening waterfall, positive energy not to be denied.

Kindly,

Papa in Tennessee

Wounded Healing Does Not End

We have come to the end of C.U.R.E., the acronym I am using to sum up approaches for dealing with tragic circumstances by invoking wounded healing, such as a grandson being diagnosed with Duchenne Muscular Dystrophy. The last three articles on my blog lay out tips starting with C.U. and R. … and, now, E.

Educate others. Hear their stories of bad things happening to good people. Cross fertilize experiences learned from trial and error.

Enlighten others and watch their curiosity grow into acts of kindness. I am convinced kindness is one aspect of the human spirit that even the Duchenne monster cannot dampen or ruin. Sharing kindness warms the soul.

Enrich the afflicted. For our family, we gather with grandson Hayes every week and ALWAYS have a big time together. Last weekend, for instance, he taught me how to play the card game, “War”. A lot of fun. Hayes actually won the contest, without any help from the rest of us, I promise!  After star gazing for the last three years, together, we now are introducing Hayes to an electronic microscope. Diverting from galactical infinity to a new and equally awesome micro-world. Truly enrichment of mind and dreams. 

Evoke. This unwanted journey with Hayes brought on by Duchenne has shed light on who I am at this point in my life. Now, more than before, I intend to continue on purpose what herebefore I may have taken for granted. Emotionally, if not also physically, hug a child or someone in need who is childlike nearest to your heart and soul EACH and EVERY DAY! Time passes so quickly.

If it is something other than Duchenne that is almost wrecking your dreams, grab ahold of what and who matter most to you and wrap a blanket of kindness and empathy around the entire ball of wax, then see what happens. One thing for sure, it won’t hurt.

Endure. My prayer is that grandson Hayes and I will outlive Duchenne, along with the entire Duchenne community. Even if we don’t, however, Hayes and I are holding hands and loving each other to the finish line.

God, I sure hope you are holding the ribbon at the finish.

Kindly,

Papa in Tennessee

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

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

Wounded Healing

This is my 21st blog article under www.RallyforHayes.com. April 25, 2019, the date of our grandson’s Duchenne Muscular Dystrophy diagnosis, seems very long ago, yet, very near. Oh, how much that dreadful report and Draconian disease have changed our lives, forever hereafter.

My last blog article, New Year, posted January 1, 2020, allowed me to outline for whoever cares the multiple challenges we face with Duchenne looking forward. Here, I summarize the steps our family has taken in a general sense in hopes that this journaling may help “wounded healing” of the heart and spirit of those who are traveling the journey with our beloved youngsters afflicted with Duchenne.

I will use the acronym C.U.R.E. to outline my progress towards being a positive force and not simply a self-perceived victim of my grandson’s terrible disease. In the hope of helping others, during the course of this and four following blog posts, I will outline the steps I am taking or plan to take with the goal of healing from my wounded state caused by Duchenne, starting with the letter “C”.

C: Clear, collect and collaborate. Upon my wife telling me on the phone that April morning that, “Oh, Gary, Hayes has Muscular Dystrophy!” only for her to call back a bit later to update, “It is the worst form of Muscular Dystrophy … something called ‘Duchenne’”, I immediately fell into the deepest shock I have ever experienced. Although I did not know anything about Duchenne, I intuitively realized it was bad.

I allowed myself to become very emotional … even crying out loud in the office and then on my way home. I could not stop weeping. I love Hayes so very much, and he is so adorable and bright. I even began yelling without notice … in the car, in my spaces around the home and along my favorite hiking trails, and most deeply in my prayers. Looking back on those first ever extreme emotional outbursts, I now understand that was nature’s (and perhaps God’s) way of enabling me to clear my mind and jettison dark thoughts. Once my mind became clearer, I was able to restore a sense of family leadership and calm deductive reasoning that have paved the way for us as a family to better deal with what will be a long-term trial by fire.

With a clearer mind, I immediately set out to collect as much information about Duchenne as I practically could, along with help and input from Hayes’ equally inquisitive and most loving father. We trolled the internet and read and discussed countless articles on the medical/pharmaceutical options, treatment modalities and their long-term effects, progressive muscle deterioration and what it looks like over time, the status of a myriad of real and potential clinical trials, support groups, financial projections, and the Duchenne community in general.

With so much information in hand, we started to collaborate with local Duchenne parents who blessed us with actual insight into what we should be first thinking about.  They directed us to Parent Project Muscular Dystrophy led by wonderful Duchenne parental survivor Pat Furlong.

That led us to PPMD’s annual convention in Orlando where, for three days, we met so many stakeholders in the Duchenne community and learned more about current clinical trials and the progression of the disease. The periodic electronic newsletter issued by PPMD keeps us abreast of research developments and the variety of fundraisers nationwide dedicated to making support and treatment more affordable for Duchenne families. Thank you, Pat. She had to experience wounded healing not once but twice with sons who each were stricken with Duchenne.

The collaboration continues as Hayes is now participating in a clinical trial at Cincinnati Children’s Hospital where doctors, therapists, and staff are so very professional and hopeful. Thank you, CCH.

Now, we shall continue to learn and question. I have found that asking the right questions goes a long way towards efficiently collecting helpful data. Information is power, and that power should enable us to make better decisions at the various intersections in our journey without suffering too much unnecessary trial and error.

Wounded healing. We must start somewhere. Hopefully, the early steps we have taken since last April will accelerate the emotional healing we personally need in order to remain sane and engaged throughout this nightmare as well as indirectly help Duchenne stakeholders the same way, and ultimately enable a cure to Duchenne

At least, that is my prayer.

Kindly,

Papa in Tennessee

New Year

New Year’s 2020. Auld lang sine. Time long past.

Wow, Duchenne made 2019 seem insufferably long to me and my family. Less than 250 days have gone by since grandson Hayes’ dreadful diagnosis. Nonetheless, much in the way of accelerating a learning curve for a life’s plan has transpired during that short but impactful time.

Diagnosis. Family huddles. Self-study. Similarly situated parents meetings. Parent Project Muscular Dystrophy. Treatment decisions. More self-study. Clinical trial choices. Totally supporting Hayes with joyful companionship. Stimulating him with intellectual and academic activities. Staying as joyful as possible. Medical reading. Networking with those who care. Raising public awareness. This blog. Much prayer.

Now, we must move forward in 2020. Recent developments in the realm of genetic transfer technology seem quite interesting. Private-public funding for research and family support will always be a challenge.

No cure, yet. No desirable long-term treatment, yet. There is a lot of work in front of us. But looking forward sure beats living in the not so long past.

With more progress during this New Year, may Duchenne soon be considered a time long past.

Kindly,

Papa in Tennessee

Body, Mind and Soul

We have a promising update from my oldest daughter about grandson Hayes and his clinical trial examination in Cincinnati earlier this week. Good marks.

His numbers for hip flex and rate of walking are improved. Blood work presents no new anxieties. We do not know whether Hayes is in the placebo control group or experimental medicine variable group; nonetheless, improvement regardless of source or reason is very much welcomed.

Early on, it was decided that a holistic approach would be best for Hayes. It is believed that the holistic approach being taken with Hayes is accounting for his physical improvement and associated self-confidence.   

Organic food and abundant Mega 3 vitamins are the norm for his eating and nutritional health. The boy robustly plays with other kids and with big kid Papa. We regularly visit interesting places and undertake new adventures.  

We are keeping his already excellent mental acumen very sharp with nearly daily study and discussions relative to math, science, and geography.  Laughter is constant, among all of us together. A loyal and playful pet dog helps. This is all good stuff.  

Duchenne is complicated, hence, no cure yet despite at least 25 years of serious searching.  However, recent advances and discoveries in genetic transfer technology are raising hope for the Duchenne community.

Emphasis on the connection between Hayes’ keen mind and willing body is the correct focus, certainly for us and most likely for any number of other Duchenne families.

Vigorous continuation of neuro-muscular disease research, including the search for treatments or even the retreat of Duchenne, is receiving greater attention and funding from both the private and public sectors. Add prayer to the mix and we most assuredly should have a promising formula for ending or at least mitigating the effects of Duchenne not so far into the distant future.

Maintaining positivity with body, mind and soul - together with quickly advancing medical science – will invariably keep hope alive until ending Duchenne becomes a reality.   

Kindly,

Papa in Tennessee

The Good Stuff

Thanksgiving, 2019 was wonderful. Among other things, family from Manhattan, New York visited. They came to the cold and wet of Nashville … go figure.

Surprisingly, they presented me with a bottle of 90 proof whiskey bourbon that was distilled in, of all places, Brooklyn! Where’s Elliot Ness when you need him?

Was it comparable to good Tennessee whiskies and Kentucky bourbons? Well, it was golden brown, came in a glass bottle, and had a bite. Pretty good stuff, actually. 

What truly is the good stuff, especially when my lovable grandson has Duchenne?  

A heartfelt and prayerful blessing of the bountiful meal that awaited us. Family sitting around the dinner table to feast on yet again another culinary masterpiece concocted and assembled by my gregarious wife of 42 years. Face-timing distant friends and relatives and seeing their young children growing up. Pet dogs making themselves at home, including on some of the nicer furniture.

Sharing with the family members from New York our totally unexpected journey since April 25th when we learned that grandson Hayes has Duchenne even had a therapeutic effect, at least on me.

A good whiskey bourbon warms the palate. Life’s truly good stuff warms the heart.  

Let’s hope and pray that a foreseeable end to Duchenne joins the good stuff.

Kindly,

Papa in Tennessee

Thanksgiving

Thanksgiving is nearly here. Time surely flies.

Early pilgrims from England barely survived their inaugural Fall-Winter in the new land. With some diplomacy and bartering, they managed to influence local native Americans to co-exist with them instead of annihilating those 53 pilgrims during September-November, 1621 (after 102 voyagers perished during and soon after the journey on the Mayflower).

One of the younger leaders of the tribe even spoke fluent English which allowed for open communication that instilled trust among the parties. Those fortuitous breaks allowed those early settlers an opportunity to work the harvest and promote security for the village. The rest is history.

We need some good breaks with Duchenne. My grandson Hayes has it. There is no cure, yet. Has 2019 been a bummer of a year for us and other Duchenne families? You bet. Nonetheless, do we have blessings for which to give thanks during the upcoming days of family gatherings? Most certainly. 

America remains strong and free, despite herself. My job is professionally satisfying and I truly appreciate my work colleagues. Cousins Hayes and Olivia have bonded. Hayes keeps getting smarter at a rapid rate, and he enjoys most all aspects of being a normal 4-5 year old. Our family remains very much together, actually stronger, since the April 25th diagnosis that changed our lives forever. God loves us.

And, quickly advancing gene transfer technologies with recent promising results flicker a light of hope for a cure or mitigation of Duchenne when no such realistic hope existed during Thanksgiving’s past.

Thank you,

Papa in Tennessee

Kindness Is No Small Thing

November 13th is World Kindness Day. This celebration was created at a global conference 21 years ago to promote kindness to others, yourself, and the world. Kindness has the power to unite people everywhere, and the impact of kind acts can make a real difference in our lives. 

On World Kindness Day, we are all encouraged to go above and beyond with our acts of kindness. It is the day to go out of your way to make others feel special. The day is also an excellent opportunity to recognize the service and generosity you already see in your family members, friends, and colleagues. Let them know how much you appreciate the things they do daily.

Duchenne is terrible. My four year old grandson has it. Since April of 2019 when we learned of the diagnosis, family members have been relying on a variety of behaviors and cultural activities to fight off the fear and anxiety that the worst form of Muscular Dystrophy can cause loved ones. As I draw from and personally incorporate these behaviors and activities, I refer to them as the arrows in my quiver to be used to slay the Duchenne monster or, at least, to move forward with hope for the future and joy for every precious moment we have with grandson Hayes.

Kindness is such an arrow. I am warmheartedly encouraged by the conversations of concern, warm smiles, and obvious prayers and good tidings of those who wish to be connected with our journey.

Thank you, Tom, Tracy, David, Dan, Ben, Charlie, Sharon, Debbie, Laura, Walt, Larry, Sam, Kim, Amy, and so many other wonderful folks who truly wish to stay in touch and cultivate such healing for me and our family with just a brief gesture or word of kindness.  

No act of kindness, however small, is ever wasted.

-       Aesop 

In the realm of kindness, small is huge … especially for those of us who are shooting arrow after arrow to end Duchenne.  

Kindly,

Papa in Tennessee

Will Not See 40

Yesterday, our family celebrated my oldest daughter’s 40th birthday.  Grandson Hayes, with Duchenne, was a pistol. Sure wish I had his energy when he is entertaining, at least in small doses.

As I wrote my first draft of this essay, I focused on a sad comment made by my daughter towards the end of the family gathering. Namely, that Hayes likely would not see his 40th birthday, which certainly is a sobering thought.

Also, towards the end of the family gathering, we toasted my wife’s endearing father, Poppy, who was an exceedingly kind, loving, readily available and generous grandfather to each of our now adult children growing up. He was my best friend during that golden era for our family until he passed, on this day in 2003.

Poppy was a veteran who served on naval ships during WWII. He made sure officers and crew ate well. He carried over that skill to the private sector where he ran a successful restaurant business in Birmingham for decades.

How am I mixing Duchenne with veteran service? Our freedom today is constructed, in part, on the blood, toil, and loss of those Americans who served and fought to preserve that freedom for Americans and others alike. Hundreds of thousands of American warriors (land, sea and air) did not reach 40 years old, or even 30, and will not in the future, because of their brave service to country.  They have the deep gratitude of our families and the unconditional love of God.

Likewise, our Duchenne children will continue to fight the good fight as they live each day the best they can under their given circumstances. And, like the battle warriors, our Duchenne children are profoundly loved by family and God.

Thank you, veterans, for your service. And, thank you Duchenne stakeholders who remain steadfast in our quest to end Duchenne during this generation.

Kindly,

Papa in Tennessee

Important Birthday

My oldest daughter was born on November 10, 1979. As she turns 40 today, none of us in the family will forget her 39th year when we learned that her son Hayes, our adorable grandson, has Duchenne Muscular Dystrophy.

My daughter was born at the Naval Regional Medical Center in San Diego while I was serving in the First Marine Division. It so happens that the Marine Corps birthday also falls on November 10th. 

Cultural notables Miranda Lambert (singer) and Lilly Pulitzer (fashion designer) joined us on a tenth day of November as well.

What do we typically do on birthdays? Well, we normally celebrate. Perhaps, a bit more sentimental and subdued this year. Nonetheless, there is so much more to birthdays than being merely a day of celebration.  

Abraham Lincoln was quoted as once saying,  “In the end, it’s not the years in your life that count. It’s the life in your years.”

There is a famous poem entitled “The Dash”. The poem is written by one who reflects on a person’s life at their funeral. The author observed that it was not the years of living and the age of the deceased that mattered so much but, rather, the nature and quality of the life she lived in between her birthday and death, namely the dash between those two dates.

The years between the birth and death of a Duchenne child will be shortened by Duchenne. Certainly, the quality of health status will decline.

However, I know my first born, our grandson’s mother, will do all she can to optimize the quality and nature of our grandson’s life and life experiences for as long as humanly possible. And, meanwhile, we will continue praying for an end to Duchenne so that our grandson’s dash is a gift to all who know and love him hopefully for a very long time. And, each birthday will matter in the process.

Kindly, 

Papa in Tennessee