Mitch had been home about a week and a half and his 5th-grade teacher, Mrs. Masina (on the right) came to visit. With her was also a teacher at the same school, Mrs. Edwards, who was a friend to Natalie. I sat in awe of these two women who took time from their personal lives to show Mitch they cared. They were so sweet to him; although they gave Mitch some thoughtful gifts, the greatest gift they gave him was their love. At the end of the day, things break but love lingers. Love lasts.
As Mrs. Masina left she turned to Mitch and asked if he wanted some homework to do. He smiled softly and nodded as if to say “no thanks”. Everyone chuckled but inside I wished he had homework – for that would have meant he was going back to school and that there was hope he would recover. But he was not ever going back to school and the hope he might beat heart failure and DMD was a distant dream far from reach.
As we left the hospital the senior cardiologist said with tears in his eyes, “Your job is to take him home and love your little boy with all that you've got. You don’t have much time.” And love Mitch we did, the very best we knew how.
As these two beautiful women left our home I remember feeling overwhelmed with feelings of love and appreciation for the good people in my son’s life. I was grateful for all of the teachers Mitch had, for they were all loving and kind. But his last teacher, Mrs. Masina, was a special tender mercy in more ways than twenty. She will forever be close to our hearts because of the way she lifted our little son’s heart.
I can’t help but be grateful for what the truly great teachers teach us; the ones who beautifully balance intellect with heart, mind with soul. Mrs. Masina is just such a teacher. I saw a spark in Mitch that I hadn't seen before – a deeper belief in himself – and I believe that spark in my son was because of the way she taught him. What good is knowledge, after all, if we forget what it means to be human? To be human is to be vulnerable, real and feeling – it is to accept ourselves and others as we are, broken and imperfect, and then strive to be a little better each day in our own way. That is what the great teachers teach us.
Mrs. Masina did just that. She not only taught Mitch – but she taught me that there is much more to life than academics. I am grateful for the gentle teachers of the soul: Mrs. Masina and Mitch have been my teachers and I am forever in their debt.
One thing I've learned is the death of a child is emotionally catastrophic. I know of no greater pain. Now that Mitch is gone our family has grueling homework of our own: the homework of learning to live with grief – which, as far as I can tell, is the work of a lifetime. There are no shortcuts. There are no opt-out tests. Every day is a lesson on love and loss, healing a little, crying a lot, and learning to move forward however fast or slow our hearts will take us.
Because love lasts, so does grief. So long as I love my son I will grieve his loss … and what a terrible grief it is. But grief is the price of love and love is worth every tear, every shard of my broken heart, it is worth the agony of loss. The love in my heart hurts me and heals me all at the same time. I am learning that to hurt is to be human and to heal, even if only a little, is heavenly.
I took this photo at the cemetery one evening as I was writing about my son and our family’s journey through the wilderness of grief. I have spent some critical time thinking about Mitchell’s Journey of late … what it is and what it is not. I hope this blog, for as long as it exists, is a place committed to honest and sincere reflections on hope, healing and finding happiness. I hope, also, it is fearlessly committed to telling the truth about sorrow and its many setbacks. The truth is, the journey of grief is not an intellectual journey nor is it a linear sequence of events and you're done. Grief is a tangled ball of yarn.
Though this page began as a quiet account of my son’s journey with Duchenne Muscular Dystrophy it took an unexpected turn as it documented his death, our family’s journey with grief and now explores past experiences we had with our son. Perhaps what’s most interesting about Mitchell’s Journey is the vast majority of its followers are not afflicted with any disability at all but are somehow finding meaning with their own journey through life. My wife and I have been deeply touched by the private messages from others, who come from all walks of life, and have shared their story and how Mitchell’s Journey has helped them in one way or another. The moment someone decides to make a course correction in their lives, to love more intensely, to forgive more freely, or to live more fully, Mitchell’s Journey goes from cyberspace to real space – and that is well enough with me.
Though I write of deep grief, I do not live in a constant state of grief. Healing is happening. But healing hurts and I write of that, too. The hardest stories have yet to be told – and I will write them not because I'm stuck in those moments, but because others may be encountering those very moments at this moment. Perhaps those reflections will serve as a candle to others as they journey the dark wilderness of grief.
Among the recurring themes of Mitchell’s Journey are discussions of faith, making sense of sorrow, and reflections on love and loss. I suppose one could add to those themes the singularity of grief, that after all is said and done, the journey of grief is travelled by one. Although nobody can do that work for us – just because we must carry our grief alone, we need not walk alone, nor does the wilderness need to be completely dark. I have seen many of you respond to others who post on Mitchell’s Journey and are hurting – and each of you who do so become a candle in the wilderness. I think that’s beautiful.
I am still a bit surprised, at times, how lonely the journey of grief can feel. I have found that people can do or say things that might complicate the healing process were I to allow it. Some, speaking from the depths of their own pain have said things like, "just be glad you had 10 years and not 10 hours" or some who have lost a spouse say "at least you have/be grateful that you have your wife to lean on" and a million other variations of a familiar and insensitive theme. Rather than taking offense at their volley of sorrow, or comparisons of grief, I just recognize these people are still deep in their own wilderness. I don't know their sorrows any more than they know mine – I only know grief is a heavy burden for all who bear it. I only know they hurt and I wish it weren't so.
I hope for as long as I live I can be a candle in the wilderness. For I have discovered the wilderness is vast and deep and exceedingly dark at times. I have also discovered what a little light can do.
The truth is I don't know what I'm doing here. I’m not a writer or a public speaker or anybody of significance … I’m just a daddy who misses his son with all of his heart. But as long as I have a heart, I will share it … because where there is love there is light and where there is light, there is hope.
To all of you, who love and lift others and have become a candle in the wilderness, shine on.
I just returned from a short trip with my oldest son, Ethan, to Southern California so he could learn to surf. He was so excited to spend some one-on-one time and hang out in the ocean. It was a wonderful few days to bond father and son.
With all that has happened the last year and a half, I was careful to make this trip just about him. I turned my cell phone off, put work aside, and focused on him and him alone. We talked about his dreams and aspirations and what he wanted in life. We ate pizza every night, we laughed and played and set aside the worries of the world. We had a great time together.
Throughout the trip Ethan made comments about how much he missed Mitch and that he wished he were there with us. I knew that Ethan lost his best friend and that his heart grieves, too. We have an open mouth policy in our family and everyone is free to talk about Mitch (or anything) at any time – not to bring undue attention to Mitch nor to suggest that our kids aren't important, but because Mitch was important to all of us in different ways. We believe open and honest communication is a healthy part of healing. So, each time I heard Ethan out as he expressed a little more about what was on his mind and heart. I softly acknowledged his sorrows and his feelings. I then told Ethan I was grateful that he was still with me and that I loved him very much; I told him there is nobody quite like him and that I was so proud of the young man he was becoming. I didn't want my son to just hear my words, I wanted him to feel them. I hope he did.
On our second day of the trip day Ethan took surfing lessons. At first he wanted to take on the waves by himself and he wasn't sure he wanted to be held back by taking lessons. I strongly encouraged him to learn from those who could help him leapfrog the little things. I told him, “The sooner you learn the basics, the sooner you’ll be able to do just want you want to do ... surf. Otherwise you’ll end up chasing waves and wearing yourself out not knowing what to do and how to do it.” Ethan was wise and agreed to lessons. Soon he was riding waves and doing just what he set out to do. Surfing was a major highlight for him.
Afterward, Ethan and I talked about the symbology of surfing. I told him life isn't much different than surfing - that often we can no more control the events in our lives any more than we can control the tide and surf, but if we know what to look for we can learn to ride the waves and not chase them or become overpowered by them. I told my son that trouble comes to everybody and we can use that trouble to move us forward or it can take us under; that the only thing we can really control is how we respond to circumstances. As with surfing, I told Ethan, now that he knows what to look for he no longer needs to chase waves and save his energy - he can put himself in a position to more easily ride them. I could tell by the look in his eyes Ethan got the metaphor.
The journey of grief doesn't seem to be too different from being in the ocean. Sometimes I can see grief coming, other times it hits me by surprise. But I’m learning what to look for, I’m learning to stop chasing waves of grief and how to better ride them out. And I know I’m not the only one in these terrible waters – so are my wife and kids. And I must care for them as while I learn to surf tides of trouble.
It was the last day of November and we were about to head home, for our time at the family ranch had drawn to an end. Little Mitch asked if he could drive a 4-wheeler one more time. I had no idea it would be his last time. Because Mitch didn't have the muscle strength to run or ride a bike like other young boys, he anxiously sought after other ways to feel the rush of wind through his hair and on his face. Riding 4-wheelers helped him do just that … and Mitch felt powerful and strong, even normal, if only for a moment. Had I known this was his last opportunity to do what he loved so much, I would have foregone meals and work and sleep for days-on-end in order to help him drink in as much life as humanly possible. We simply didn't know what little time was left, we just did the best we knew and hoped we passed the test.
As we prepared for what would be Mitchell’s last 4-wheeling adventure, this sweet little boy sat quietly in his grandmother’s garage and put his shoes on. The chair upon which he sat had deep cushions and nearly swallowed him up. Without complaining, Mitch silently struggled to get up from the couch but he couldn't – his muscles were much too weak and the cushions comfortably deep. Ethan noticed his brother quietly struggling and in need of help and quickly ran to his aid.
This was a simple exchange that was over in the blink of an eye. Had I been outside, impatiently yelling for them to hurry up, I would have missed this silent sermon of love and service between two children. What’s more, had I been outside honking my horn anxious to complete the task of spending time, I would have missed the point of everything … for riding 4-wheelers wasn't the point, even though little Mitch loved it so, it was doing things together with love. That’s all that matters in the end. It is something of a heavenly paradox that while we raise our young children, they are also raising us; for I am a very different person from the young gallivant I once was so many years ago.
As I watched this spontaneous act of brotherly love, it occurred to me in the most profound way Mitchell’s journey was also the journey of our family. Though Mitch walked alone with DMD, because nobody could do it for him, we walked beside him and cheered him on and did our best to clear the path for him. Our lives were inseparably connected, our journey’s intertwined, yet how much pain and sorrow we would come to know had never crossed our minds.
While Mitch had some best friends in his life, there was none so great as his older brother. These two boys were a match forged in heaven and Mitch loved him deeply. If ever I am tempted to complain about what has gone wrong in my life, I need only look at what has gone right. Ethan was a tender mercy for my son and when I think upon that gift alone, something gone right, I cannot help but weep for gratitude. For I am reminded that I have a Father who cares enough to give little comforts no matter how big our troubles seem.
Since Mitchell’s passing I have noticed whenever Ethan sees a photo or video of Mitch I see a softness fill his countenance that is distinct and visible. There is a tenderness and admiration in his eyes I don’t normally see in anyone, for any reason. Ethan loves his little brother just as much as Mitch loves him – and that makes my heart sing. As cool a young man Ethan is becoming, I pray he never loses his softness; for softness is the fertile soil upon which relationships grow deep. I also hope he never confuses softness for weakness – they are not the same. Not at all. I think Mitch was just as much a gift to Ethan as Ethan was to him.
Mitchell’s Journey has taught me to take great comfort in the little comforts, for they all add up. When I look at this simple image of two young boys meant to be together, who learned how to lift each other in different ways, I begin to see the bigger picture. I sense we are not left comfortless, neither are we alone. Faintly, as quiet as a whisper can possibly be, I hear something and it is heavenly.