About seven years ago my in-laws invited our family to join them on a trip to Hawaii. Mitch was little, Wyatt was a toddler, and Laura-Ashley and Ethan were young and full of energy. The trip was a gift, but the experience of spending time together was an even greater gift. Today, the memory of that time together is the greatest gift.

Mitchell’s faithful Aunt Sonya came, too. Whenever possible she put Mitch under her wing and helped him enjoy life’s treasures before the hour grew too late. She knew the troubles that would soon come to our son in a way we did not. Her profession gave her a unique vantage point as she saw the biological horror show of DMD first-hand. She was careful to never frighten us but I could sometimes tell by the look in her eyes she was holding back a little – she knew the storms that lie ahead. But we had today. 

We spent the better part of the day swimming, making castles and rolling in the sand. Grandpa even helped Mitch catch a few waves on a boogie board. He loved that. Mitch was so cute and playful and was always concerned about getting sand in his cute little bum. The water was warm as a gentle bath and I finally understood why some call Hawaii a paradise. As the day was yawning to an end I noticed Sonya and Mitch on the shoreline watching the sun as it slowly set. Mitch loved sunsets. I remember thinking to myself when I took this photo that Mitch was lucky to have Sonya. And I thought to myself how lucky all of us were to have him. 

I wonder what my son was thinking as he looked into the ocean, as far as the eye can see. I can still hear the surf crashing softly and the ocean wind as it whispers through the palms. 

As I was meditating over this moment earlier this morning my wife came into my office and handed me a health insurance form to sign. I asked what it was for and she said it was to verify the termination of Mitchell’s coverage. In an instant my hands began to shake and my heart sank to the floor as we took one more step into our new, painful reality.

As far as the eye can see, 
grief stretches vast, and deep
even to infinity.

But there is more to grief
than pain and sorrow,
it is the longing to see my son
on some tomorrow.