It was so hard to see our son slip into oblivion. I’ll always remember how lovingly Natalie held Mitch as he struggled to breathe and keep balance. Mitch was taking medicine to erase from his mind oxygen hunger – without it he would be panicked, breathless, and gasping for air. It was a medicine of mercy. As Mitch descended further into the abyss he began taking other medications to erase from his mind the pain of organ failure and the panic of dying.
We were not prepared for such things; we knew how to make macaroni and cheese, play UNO and swim in ponds. We knew how to laugh and play, do homework and tell stories at bedtime. We didn't know how to manage the symptoms of death – let alone watch our little boy die.
My dear wife demonstrated a bravery and steadiness that humbles me to my core. She was soft and tender to Mitch and never did anything to scare him – even though in her heart she was terrified beyond measure. Occasionally I would find her in our closet weeping next to a pile of tissues – but around Mitch, she was steady and sure.
Although my sweet wife and I did our best to prepare for the holocaust of losing our son, I discovered it wasn't possible to intellectually or emotionally prepare for such a loss. Yes, I knew it was coming and I wept in sorrow anticipating the loss of my son – but, with all the sorrow I knew at the time, I at least had the hope of another moment. There was always hope of another something – and that kept the true weight of grief at bay. It wasn't until Mitch was gone that the true weight of grief broke every part of me. All the sorrow I knew before, anticipating his death, was but a foretaste of a much deeper pain to come. That was when my heart was hurled into oblivion.
I have learned the true hell of losing a child happens in the aftermath, long after flowers and casseroles – that is when it’s hardest. And it is hard for a long, long time. It isn't hard for want of sympathy, it is hard because he is gone. Really gone. Days seem to stretch eternal and night, with its promise of sleep, is a welcomed escape from oblivion and the heaviness of grief.
For the next year and a half I found myself slipping in and out of oblivion. The first 12 months were absolute oblivion – there were more moments of tears than no tears. Thankfully that is not the case today. I still cry every day, but I no longer cry all day.
I find myself slipping into oblivion at the most unexpected times. Although oblivion is no longer home to my broken heart, it is a second home and my heart will take residence there without any warning at all.
In fact, just yesterday I was in a business meeting discussing many important topics related to our future as a business. At one point, without warning or provocation, I was taken over by a profound sense of loss. “He’s gone. Mitch is actually gone.” I found myself quietly gasping for air thinking to myself, “I can't believe he’s gone.” It was a wrestle of the soul. I tried to push those feelings aside so I wouldn't erupt in tears in the middle of our meeting in front of the other men. By the time I reached my office and shut my door, the floodgates opened. I wept as though I just lost him.
I don't know how to grieve any more than I know how to watch my child die. I just know how to make macaroni and cheese and play with my kids. I know how to cuddle by the campfire and dream up bedtime stories. I don't know how to live without Mitch – but I don't have a choice in the matter. Each day I take a step forward – and each day is a little better than the day before.
I miss my son – every moment of every day I miss him. I wish I didn't have to go through this. And though I find my heart in oblivion at the most unexpected moments, I'm somehow able to find my way back to that path of healing, that path of peace, and thankfully I haven't lost any ground.
Somewhere on the other side of all this hell, is heaven. I seek after that.
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.
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 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.