Guest blog by Paul Miller

Our son Hawken was diagnosed with Duchenne in the fall of 2002.  Debra and I rolled up our sleeves and began a journey we had not anticipated.   We found there were many variables to managing this disease.  One of these is physical therapy.  Maintaining the health of the muscles is extremely important.  Debra and I approached every aspect with a very discerning eye.  We found that traditional therapy for healthy muscles does not automatically apply to a boy with Duchenne.   We began a nightly regimen of stretches and massage.

Meanwhile, I was dealing with the loss of getting to be the Father to my son, that my Father was to me.  My Father, as far back as I remember, made me feel safe and loved, although it was never verbalized.  It was done through action.  He coached me in football and hockey and when he wasn’t coaching, he was always there watching practice or a game.  I was fully supported to pursue any interest that I had.  I couldn’t wait to be that Dad for my son and better, if possible.

One way I felt I could improve on the great parents I had was to better communicate thoughts and feelings.  Communication is a two-way street.  Initially, this plan was met with difficulty of getting my son to share in the conversation.  How was your day was answered with one word, “Good.”   What did you do answered with “stuff”.  I wasn’t getting too far with my big vision of open communication of thoughts and feelings between Father and Son.

As we introduced the nightly physical therapy, I noticed more conversation and sharing of thoughts and emotion.  Early on much of this was tough because of the realization of the effects of the disease on a boy that just wants to run, jump and play in a playground.  We did our best to come up with solutions to normalize and integrate work-a-rounds.  There were enough viable solutions and positive experiences from dealing with difficult days at school, that our nightly stretches became what I call a “safe zone.”

I believe the physical contact between the parent and the child created a safe space to explore difficult conversations of thoughts and emotions.   Literally, that hands on experience acted as a truth serum for my son to share what normally would have been kept to himself by most boys.   The nightly stretches truly became a blessing.

Many times I found we were both looking forward to the stretching time.  We found that true “quality time” that is talked about.  Our stretching time was a free flow of silliness between a couple guys to very serious conversations.   It was never a forced conversation; we just went where our mood and needs took us.   I learned, probably before any other parent, who was kissing who in the playground…….yes playground.    I also heard about difficulties with a class or other scenario.  There were many problem solving sessions.  I always got an update of some sort or other on how he was doing.

I consider the nightly stretches as one of the greatest blessing within this terrible disease of Duchenne.  In fact, I have told many Dads of healthy boys if you want to find out how your boy is doing, do some physical therapy or stretches with them.  The physical contact establishes a connection and deepens the Father/Son bond.

This was something I stumbled upon through being diligent about nightly stretches.  It was not an immediate breakthrough.  It was about being disciplined in doing the right thing consistently.  It was about being fully engaged and paying attention to my son during the stretches and being open to the opportunity to grow our relationship.

Additionally, we found TV shows that we watched together like Glee and American Idol.   These shows created another opportunity to discuss beliefs, social trends, chasing dreams etc.   We would have very robust dialogues about tough issues and the latest thing.  It was a great opportunity to teach my son about the world while being entertained and stretched at the same time.   As he matured, our conversations became more detailed and in depth.  We could have very straight talks about his body and Duchenne.  I always encouraged him to pay attention to your body – “Know your body.”

Although, Hawken is now away at college; The University of Southern California.   Fight On!  I still have the occasional opportunity to stretch him and we go right back to the combined silliness and serious banter routine that we had for the 12 years while he lived at home.

During these occasional stretches, I take the opportunity to remind Hawken the purpose of the stretches, the power of prayer/mediation and his breathing during the stretch.  Additionally, I continue to remind him to pay attention and be very aware of his body.  I believe this intentional approach to his stretching and attention and awareness of his body has helped Hawken manage better and stay within the limitation of his muscles.

I encourage all Dads to embrace physical therapy nightly or as much as possible with their sons.  In addition to the physical benefits, it will open conversation and deepen your relationship.  I hope you find the blessings of physical therapy with your son that I found.

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