This was one of Mitchell’s last Nerf wars. Toward the end of this family battle my sweet son was getting lightheaded and laid on his back so he could play and rest at the same time. Mitch took his last shot – simultaneously out of ammo and energy. Mitch, finding himself out of ammo softly threw his gun at his sister, not to hurt her, but to demonstrate he was fighting to the very end and that was his final blow. He always did that and it was so cute and endearing. I just adored my son.

I remember seeing the PICC line in his arm that pumped medicine directly into his weary heart. Without it, he would have died much sooner. My heart sank as I saw the point of entry surrounded by bruises and it was tender to the touch. He didn't mind the discomfort and inconvenience of the PICC line, he was just glad to be alive. Though it was fun to have play battles with our son, I was quietly reminded he was fighting a very real battle with DMD and he was losing. That was a battle he would not win.

Little Mitch loved to have Nerf battles because he loved to strategize. He was a mastermind. I remember hearing him as a very young boy critique his older brother, Ethan, while playing a particular video game. Mitch said, “Ethan, that’s not a wise decision.” He then began to tell his brother why his strategy was in error and recommended a different way. I was couldn't believe his maturity of thought and insight. This young boy, was then, and remains today, a much older soul than mine. Yes, he was still 10 and did all the things that 10 year-olds do – but, at the same time, he was more than 10, if you catch my meaning.

He didn't realize it at the time, because he was humble and loving, but Mitch was a natural leader. To him, leading wasn't about ordering people around, it was about building teamwork, and unity and helping others learn to lead. I have so much to learn from my little broken boy. 

The way Mitch conducted himself reminded me of the wise words of Patrick Leoncioni, who wrote of teamwork, “Not finance. Not strategy. Not technology. It is teamwork that remains the ultimate competitive advantage, both because it is so powerful and so rare.” Mitch knew how to create and keep a team. As his father, I found great satisfaction being part of team Mitch. My grief has been deepened because I feel like I lost a key member of my team.

If there is ever a team that matters, it is family. That is the one team, forged out of struggle and made stronger by love, that should fight to stay together to the very end. My family is everything to me.

Grief is a battle unlike any I have ever known. It is difficult enough to grapple with grief by itself and is made complicated by those who dismiss the struggle or think it’s time to move on. Because of that, I have learned not to need or seek others acceptance of my own grief journey. Just today I had a phone conversation with someone I have known my entire life. I mentioned that my family is still in a state of crisis. She seemed surprised – almost as though she thought the crisis should have wound down at the death of my son. Those thoughts are common to those who stand comfortably on the outside looking in. To the contrary, when my son died, the crisis was just beginning. And what a crisis it has been.

Though I will continue to write about our journey through grief, I will also be chronicling our healing, too. One day I may not write of grief so much. But I am not done grieving and as long as I am moved to say things, I will say them unapologetically and as it happens. I have discovered in my own journey that grief and healing can co-exist, and I will share our experience with both. 

I wish the battle of grief was like my son’s play battles. That we could struggle for a moment, then set it aside and go back to normal. But the death of a child obliterates normal and ushers in a battle with grief that is a fight to the very end. A fight to keep your soul from growing numb, or your heart from falling apart or simply to keep from getting lost in the wilderness of sorrow. But, like my son, I will fight on. To the very end.