My daughter took these photos the day after Mitchell came home. He was so excited to be surrounded by all that was familiar to him. Most importantly, he was grateful to be with his family – for above all else, family is what he loved the most.
My wife and I were anxious to hold, hug and kiss him without the spider web of cables, tubes and IV’s. It was a surreal time for us. 48 hours prior to this very moment Mitchell had a team of 12 medical professionals all working vigorously to keep him alive. At home he had 1 hospice nurse whose job was to help him feel comfortable and usher his body through the painful process of organ failure and death.
For Mitchell, touch was very important to him. There was no blanket that could replace the warmth that came from his parent’s embrace. Ever since he was a baby he would rub his forehead against mine -sometimes for minutes at a time. He wouldn't say a word and neither would I; we didn't need to. We spoke more in our silence and gestures than could ever be communicated by words alone. This was one of his ways of loving deeply and I never tired of it. I yearn to do it again today and my heart sinks to the depths of my soul that I cannot.
Within a few days of this photo Mitchell lost the ability to smell. It never came back. He would tell me later how much he missed smelling the things he loved. He yearned for the scent of his favorite shampoo, the smell of popcorn and his dad’s cologne. He had an appreciation for the little things in life and I admired that about him greatly. A week before he passed away Mitchell asked if we could go to the store to buy shampoo that had a stronger scent … so that maybe he could smell again. I hugged him and quietly started to cry. Oh, the little things we so often take for granted …
I will never smell things the same again. Never a scent my nose encounters that I don’t thank my God for all that I have.
Over the last 2 years I would occasionally ask Mitchell what advice he would give people about life. Without fail he would respond “Be nice to each other and be glad you’re alive. Nothing else matters.” With this philosophy he never varied. I found it fascinating that a child so young was so attune to the intrinsic value of life. What’s more, he understood the deeply spiritual value of kindness. Most young children seem to worry more about play things and consumption (perhaps too many adults do, too) – but Mitchell possessed a sobriety about life and relationships that was far beyond his years. It was as if his soul knew what was to come long before his mortal body failed him.
I was raised to accept the reality life is tough, because it is. And at some point the world tells us we have to suck it up and take it like a “man” or a woman, or a lion or a bear. But I also realized in the privacy of our bedrooms or the quite of our minds there is often an unspoken dimension to us . . . a part of us that is vulnerable and mortal; a part that loves deeply and hurts honestly.
Years ago I stopped pretending to be a lion or a bear. I decided to be human – and that has been liberating.
Three weeks after my daughter took these photos, Mitchell’s weary and scarred heart, after having fought valiantly to survive, fluttered and stopped.
I would give everything I own, or could ever hope to be, to have my little son back with me. His broken heart, a heart that loved deeply and hurt honestly, was more noble and worthy than all the lions and bears on earth. Mitchell reminds me what it means to be human and that the lions and bears we often pretend to be are just a mirage. My son taught me there are no lions or bears, only humans … and to pretend otherwise is to cheat others and ourselves.
One day, when we all have eyes to truly see, we’ll come to know there was so much more to mortality. That to be nice to each other and grateful for life are among the prerequisites to spiritual sight.
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.
A few years ago our extended family had a reunion in Mexico. Our generous step-father and grandfather sponsored the trip as a means to spend time together and create memories.
On this occasion, we were at the Cenote in Chichén Itzá, Mexico. Imagine a giant underground pool of water several hundred feet beneath the surface and surrounded in the hardest stone. Were you to look upward you would see the sky, jungle trees and vines draping downward to the water. The water below was exceedingly deep and dark, but it was fresh water and a nice break from the intense heat.
We helped Mitch descend a stair path until we reached a stone platform about 10 feet from the waterline. Natalie, wanting Mitch to have a life full of experience asked if he wanted to jump into the water, she said, “I’ll go with you.” Mitch gladly accepted the invitation. Mitch was afraid of nothing, save dying. I think he only feared death, not because of what would happen over there, but because he didn't want to miss out on everything happening here. Mitch loved life. He often commented how glad he was to be alive. And to think how oft I have lived and never really been alive. Because of my sweet son, I am changed.
I'll never forget the look on Mitchie’s face after he came out of the water. He had the biggest smile because he conquered another one of life’s challenges. Fellow swimmers helped Mitch and Natalie climb the rope ladder so he could jump in once more. Mitch loved this experience. He was so happy to have dove into the water with his mom and he talked about it for a long time.
I love this image because it is symbolic of how my wife and son lived. Mitch loved life and was always up for an adventure. My dear wife postponed any convenience, if necessary, to teach our children discipline, a sound work ethic and to enjoy everything life has to offer. This image exactly depicts my noble, loving wife seeking ways to help our disabled son drink life in; always by his side, always holding his hand.
The night Mitch passed away I remember my wife holding his hand in a similar manner – it was firm and loving, tender and assuring. Only that time she couldn't jump with Mitch. She stood beside our little boy on the edge of a different dark water … a place wherein one cannot see, at least with mortal eyes. Natalie loved our little boy and let him know he would be okay – for soon he would jump to that other place.
It wasn't but a few days earlier Natalie wept at the side of his bed, thinking Mitch was asleep when he awoke and said, “It’s okay Mommy.” I will forever be in awe of the strength and nobility of this little boy … who set aside his own fears to comfort his mother. I am quite certain that was a jump he did not want to make – but he loved his mommy enough to help her feel better.
Mitch lives. He doesn't live because I write of him and that his memory is in the hearts and minds of people. He is not an idea or a memory. He lives as an actual being, a person of consciousness: a child of God who lives on – as will all of us after we leave this mortal state. I know this. I only wish such knowledge took the pain of separation and loss away – but it doesn't. It gives context to loss and sorrow, but it doesn't give us immunity from pain. I miss my 10-year-old son. I want him back and I cannot have him and my heart is greatly pained therewith.
Yet, to look upon this image gives me fresh courage to live a full life and drink the moments in the best I can. I want to live a life like Mitch lived – fearlessly facing life’s adventures and doing it with those I love. If my little son could face all manner of unknowns with such bravery, so can I. And then there’s my sweet wife … a woman I will always love and honor because of the way she lives and loves.
I am grateful for these two beautiful examples in my life: my wife for endlessly severing and loving and my son for his bravery and selflessness – which selflessness at the end of his life was a bravery of a much nobler sort.
I remember looking across the alter at my wife as I held her hand and said “I do”. We made a promise that we would love and support each other the best we knew how; in sickness and health, in death and everything in between. On that special day, it never entered our minds or hearts that we would have a child who would be a cause of so much joy and so much sorrow. I just held my sweet wife’s hand at the alter and thought myself the luckiest guy on earth.
Fast forward about 15 years and my sweet wife and I found ourselves almost in the same position, only this time we had our dying son between us. We didn't see this coming the day we married. Few do.
As I held my son’s hand and looked at two souls I loved with all of my heart, I was reminded of our wedding day and the promises I made. I knew I wouldn't be perfect, but I would be true. Together we would stumble and fall, but always, we would see each other through.
Mitch was having a painful procedure performed by the hospice nurse. He was nervous and wanted it to be done quickly. At the time, Mitch wasn't aware we were desperately doing all we could to buy him another day, or hour. If ever our son walked on thin ice, it was never as thin as this. As the procedure began Mitch squeezed my hand and I gently gave him a hand hug to let him know I cared. My tender wife caressed his face and kissed his cheek to let him know she was there.
Brave Mitch wore his Call of Duty shirt my sister gave him as a welcome home gift. I couldn't help but think my son a fighter of a different kind, far behind enemy lines. His biological enemy, Duchenne Muscular Dystrophy, was merciless and invisible and eventually gave him a fatal blow. There are no medical weapons, yet, to defeat such an enemy. DMD is aggressive and 100% fatal – it is only a matter of time before there is none.
Two weeks later I would once again hold my boys hand in much the same way as this day … with my wife quietly weeping at his side as my best buddy was slipping into oblivion.
I've spent a great deal of time contemplating the notion “time heals everything.” I have had many tell me time does heal and just about as many (even after 50 years) say it does not. Which, then, is true? I say both – but both statements are answers to different questions.
Healing and restoration are not the same. I believe those who eventually make peace with death come to know the difference. I wonder if part of the struggle of grief is confusing restoration with healing.
Were I to talk to a war veteran who lost a limb 20 years ago, I am rather confident time will not have restored him. Surely there will be healing; the site of injury will seal up and scars may fade over time, but his limb will still be missing. It will always be missing.
I have lost a child who depended on me for protection and love; I would have rather lost all my limbs, my sight and hearing than lose my son. For me, losing Mitch is infinitely worse – for a child is more than a limb, they are an extension of your heart and soul. Like a lost limb, he will always be missing from my life and I must learn to walk and live without him. At least in this life, I am coming to terms that I will not experience restoration, however much my broken heart desires it.
Like an amputee, I will always be missing a part of me. Yet, thankfully I am healing. There has never been a day, or an hour, I don’t think of Mitch … that I don’t reach for him. I have, at long last, finally reached a point with grief where there are days I do not cry. However, I seem to make up for those days when I do cry. But I don’t cry all the time. Until recently, I used to. The passage of time will not restore my son anymore than an amputee can regrow a limb, but time will allow my wounds to close if I dress them properly.
One day, in a time and place different than this, I will see my boy again and I will fall to my knees and weep. Until such things are restored, I am thankful that time and patience has seen the bleeding stop. The site of my wound is as tender as it’s ever been; tears and heartache are just a memory away. But, with heaven’s help I am healing, however slowly, a little more each day.
In moments of profound grief, when I fall to the earth and can’t help but weep, I will remember the promises I made and promises I shall keep … on the day of our wedding when I held my wife’s hand, and this very moment when I held my baby made of sand. Come whatever, come what may, I will stand beside you until my dying day.