Last week, while attending a #ppmd conference, Natalie and I met several families with whom we discovered an instant bond. I gave this young boy, Logan, one of Mitchell's medals from our annual#milesformitchell run. I wanted him to know that he was remarkable and that I admired him. He was such a sweet child and reminded me of my son. I was also grateful to have met his parents, who were as strong as anyone I've ever known. I only wished there was enough time to sit down with every family and learn their story.
Losing our son didn't just break our heart; strangely, it enlarged it. Since then, we have learned to love others and empathize in ways we never imagined. The further I head down#mitchellsjourney the more I'm beginning to realize that we may not be able to save lives, at least tomorrow, but perhaps we can help save families. For if we save a life, yet lose our families, we may have won a battle but will have certainly lost the war.
So grateful to spend time with some newly diagnosed families and hear their stories of heartbreak and hope. Listening to them has given us ideas on new ways to help. We love #ppmd and the tremendous good they do for others.
“Death is no small thing. It is the biggest thing. We spend our lives avoiding it; we invest in medicine to stop it, and we make laws to preserve it. Death, it is the loss of everything. Grief, the terrible sting over the very thing our hearts most want to cling.”
I don’t have many photos of Mitch with me – which makes the precious few I have all the more special. Most of them aren’t in focus – but I don’t care. I’ll take anything I can get.
Whenever he was close to me, Mitch would lean his head into my arm, shoulder or chest as if to cuddle any way he could. I know he felt comfort around me – but I don’t think my son had any idea the comfort I found in him. I still long for that comfort.
By the time this photo was taken, we were informed Mitch had days to live. I was so sad about losing my son that I cried everywhere but in front of him. My eyes always seemed to sting, as if I were swimming in chlorine. Every waking moment, my chest felt like it was covered in a lead blanket, my lungs felt shallow and breathing seemed vaguely sharp and painful – for the hours-upon-hours of weeping took its toll on my weary body. Sleeping was impossible. And when I finally found sleep, I wasn't sleeping; I was just passing out.
I remember teaching little Mitch how to walk as a toddler. It was hard for him because his legs were already weak – but he would hold my fingers with his baby hands and he gave it all he had. I remember listening to his tender voice as he read children’s books to his sweet mother. He tried so hard to be a good student. With vivid detail, I remember watching his chubby little hands grip crayons and work so carefully to color within the lines. As he grew a little older, we tried to teach him that one’s beliefs don’t make them a good person, but their behavior does. Mitch embraced that philosophy. Before he died, we asked him what advice he would give the world. He said this exact phrase, “Be nice to each other and be glad you’re alive. Nothing else matters.” In a tender moment, this small child became a giant; the student became the teacher. I will spend the rest of my life trying to live up to those tender words from a little boy who did just that.
We spent almost 11 years trying to teach our son how to live. Suddenly, we had to teach our son how to die. Nobody ever taught us how to do that and we were terrified beyond measure. As this little boy came to know his fate, the real giant emerged. Though small in stature, he was towering in spirit.
I have seen a lot of material over the last few years about grief, death, and healing. Some say death is nothing at all – as if to suggest we needn’t trouble ourselves with sorrow over the death of a loved one. Others say our child is just around the corner, as though we might suddenly find peace in such a notion.
The loss of a child isn’t nothing. To the contrary, it is everything. What’s more, around what corner can I walk? What room can I enter to see my child and hold his hand once more? There is no such room, no such visiting hours. Though I have had spiritual experiences that show me my son still lives and that there is life after life, I still miss my son. I miss the way I used to have him. I miss his voice and his tender ways. I miss the ordinary days.
Though I understand what those writers were trying to say, I believe some of that prose can cause the sufferer, especially those new to grief and even those who have suffered long with grief, to wonder if something is wrong with them; that because they still hurt, perhaps they’re not grieving right.
Death is no small thing. It is the biggest thing. We spend our lives avoiding it; we invest in medicine to stop it, and we make laws to preserve it. Death, it is the loss of everything. Grief, the terrible sting over the very thing our hearts most want to cling.
Grief is a long, long road. As far as I can tell, I will live with grief the remainder of my days. Through that sorrow, I am learning Heaven’s strange and mysterious ways. And with each tender lesson from my Father, I am beginning to make peace with my pain. I accept that somewhere deep inside me, there will always be a little rain. That is making peace with pain.
There is no single photo that encapsulates what happened today at our Miles for Mitchell run. We were humbled by everyone's support and loving encouragement. Though we run in honor of Mitch, we also run in hope for other boys with DMD. Today we had 11 children, each with DMD, attend. Each child left knowing they were loved by a growing community who cares and wants to help.
In this photo, Natalie talks with a dear friend of hers who also has a son with DMD. Our little Mitchell was friends with her son, who is also named Mitchell. Two DMD mothers who love their sons and carry uniquely heavy burdens, yet they set their sorrows aside to love and support each other.
As I attended the funeral of my beautiful Aunt earlier this week, a woman who loved little Mitch and was there to support him during special times in his life, I discovered that she often said of life, "We're just walking each other home."
May we walk each other home with helping hands and loving hearts.
Thank you to everyone who supported our event. It was a beautiful day.
