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.
As Father's Day approaches, I can't help but thank my Father in Heaven for sending me Mitch. It is through that journey of love and pain that I have come to appreciate family and what it means to be a father and a son.
Until my dying day, I promise to be nice to others and be glad I'm alive; because as Mitch taught me, nothing else matters.
“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.
“Selective neglect caused me to be deliberate in saying yes to the most important thing and “no” or “not now” to other things.”
The summer before Mitch passed away, Natalie and I took our kids on an adventure in southern California. Mitch, tired of using his motorized scooter, wanted to stand and go down the escalator by himself. For a moment, he wanted to feel normal again.
Before he stepped onto the escalator, Mitch said, “Dad, will you go with me?” I smiled and said, “I would love to.” Mitch went first and I immediately followed. A few seconds later, he turned his head to make sure I was with him.
Mitch often made glances as if to say, “Are you there?” Though he was brave, he didn’t want to be alone. No child does. So, I always tried to be there for Mitch and my other kids. I was, and continue to be, less-than-perfect. In fact, I wish I could do a lot of moments over. But I tried, and I keep trying.
As a father, I knew it wasn’t practical to be everywhere, all the time, with my kids. I had to learn to do what my brother-in-law taught me years ago … embrace a philosophy of selective neglect. That is to say, when work requires, I have to neglect other aspects of my life so that I can support my family. And when my family needs me, I will set aside work so that I might be there for my wife and kids. It empowered me to say “No” … or “I can’t” … or “I won’t.” It also taught me to say, “I will,” “I can” and “Yes.” Selective neglect caused me to be deliberate in saying yes to the most important thing and “no” or “not now” to other things. If I were forced with an ultimatum to choose between work and family, work would lose every time. Fortunately, life isn’t that dramatic and most of us can find a healthy balance that works for our own family dynamic.
For every photo I have of Mitch, I have just as many of my other kids – each with a story of love and faith of its own. As I look through those photos, I can see each of my children doing this same thing as Mitch did in this image … possessing a quiet look as if to say, “Are you there?” From school programs to athletic competitions, my kids have always looked into the vast audience of onlookers to see a glimpse of mom and dad and to make sure they weren’t alone. To make sure we were there, supporting them. Loving them, not just in theory, but in practice.
Time and attention, service and sacrifice; these are the ingredients for love. These ingredients come from focus and effort.
For me, being there isn’t just about being physically present … it’s about being emotionally and spiritually present with my loved ones, too. Being present isn’t always easy for me; I worry about payrolls, client deadlines, employees, projects, investors and a mountain of other things. At any given moment, I’m managing five catastrophes, 40 brush fires, and 1,000 mosquito bites. And that’s just the tip of the iceberg. For me, being present takes work. If I’m not careful, I can come home from work, yet never really arrive. Being present requires me to prioritize and remember that some things matter more than others.
So, on this sunny afternoon, I practiced selective neglect; I set aside work things and lesser things so I could give Mitch and my family all of me. They are my everything, and I can’t think of a time in my life I regretted living that core value.
As Mitch turned his head and glanced at me from the corner of his eye, he wanted to know his father was with him … that he wasn’t alone. I knew Mitch was in trouble. I also knew time was short – but how short, I knew not. I only knew I had that moment, so I gave him all of me.
I am guilty of many imperfections, and I wish I were a better human than I am. And while I try to sort out my own personal growth, I will always try to be there for my family, however imperfectly. When my kids turn their head, I want them to see a familiar face smiling back at them, loving them and cheering them on.