We were out of time.
The window to laugh, build Legos, have Nerf gun battles, and play games as a family had closed. As that window closed a new window was beginning to open. A window to that other place; a place that requires faith in order to see and feel … a place that hides behind a curtain of darkness where everything there is out of mortal view. I could feel the breeze from that new window that was opening – it was both calming and frightening.
Each of us came to Mitchell's bed to have a sacred one-on-one conversation ... to say goodbye to a sweet little boy who had been woven into our hearts and souls. As hard as it was to say goodbye then, it is infinitely harder now that he is gone.
This was the end and deep inside my heart I was terrified. Sweet Mitch knew he was about to die, yet he faced that harsh reality with dignity and selflessness. He wanted his mommy to know he was going to be okay. But inside I wasn't okay. As his father I spent my life trying to care for and protect my son and couldn't save him from DMD. If my son had cancer, he might have had a chance. But for children with DMD, there is no escape. Absolutely none.
When it was Ethan's turn, he knelt gently by Mitchell's bed and held his hand and told him how much he loved and admired him. As I left the room I turned my head and saw two young boys who just wanted to play – and my heart was pulverized. I quietly shut the door and fell to the floor and wept tears of the deepest sorrow.
This would be the last conversation they would have in mortality.
Later I learned that Ethan made sacred promises to his little brother. Ethan told little Mitch he looked up to him and that he would never forget what he taught him. He promised his dying brother he would live a life that would honor him. They talked for 45 minutes.
As my son was slipping away my mind and heart were wracked with self-doubt and sorrow beyond all description. A torrent of panicked questions flooded my mind ... "Have I said all that I want to say? Have I apologized for all of the times I disappointed him? Does he know how much I love him? Really, truly, does he know? How do I say goodbye to my little boy? Is my son okay?" Despite the panic and doubt in my heart, I tabled my emotions for my son and remained calm and assuring for Mitch. To Mitch I could fold mountains and put them in my pocket. But inside I was stumbling over pebbles.
I wasn't afraid of death for I know life continues after death. I know it. But I was afraid of goodbye. I was afraid of the end. The end of cuddling, of conversations, of hearing his voice, his laughter, his sense of humor, his very being as I knew it. It was all coming to an end. Although I knew goodbye was "just for now" - it hurts just the same.
I had weeks to prepare knowing this time would come, yet despite my preparations for this loss I was trembling in agony. Intellectually and emotionally you brace for the impact of this loss - but when it happens you realize the bracing isn't to stop the impact but to keep you from breaking apart.
I don’t know what promises Ethan made Mitch this day - but I know he will keep them. I also made promises to my son – that I would do my best to live a worthy, good life – so that I might see him again. And while I am mortal and deeply flawed, I will not stop trying. I will pick myself up when I fall and keep trying. That is my promise. I will never lose sight of my son and I will pay any price to be with him again.
As I wrote in a post earlier last year, “there is a place beyond the hills I cannot see. A place my little boy waits for me. I run to him.”
We were out of time.