A journey of the heart...

My dear friends. who lost their son this fall, are on a journey this winter break...a journey of the heart. They have chosen to take supplies and equipment to other families in need, other families who have children affected by MTM. Although I have not spoken to them...I feel that I am on this journey with them...my heart that was shattered alongside theirs leaving pieces in each and every stop. These gifts are a small reflection of their son that will shine throughout the United States. Each time another child uses the equipment, his memory is refreshed.

Their journey has taken them over 7000 miles. Seven thousand miles of gorgeous sunrises, colorful sunsets, mountains and deserts. Sights where their son's spirit shines through. This journey, their journey of the heart, has been a way to honor him, honor their union as a family, and mourn his loss.

Sometimes you meet people in your life...people who are good, kind, special. They are these kind of people...real, genuine. They not only openly shared the life of their son, but even in his death have shared deep intimate feelings. They have allowed others, like myself, to walk the journey with them. They have allowed other hearts to be bound with theirs.

It has been a gift...their unselfishness, their openness.

This journey, one that is ongoing, has allowed others to be with them...I am honored to be allowed to walk alongside them...I am grateful to be their friend.


  1. Myotubular Myopathy, it is a rare neuromuscular disease that is genetic. Our sons have this disease.

  2. Very moving post. Puts me in the thinking mood right now, that life is short and we really need to cherish every moment we have with our family, friends and beloved. Thank you for posting this.


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