Little Mitch was so cute this night. He always loved to take baths … I think in part because he was able to float in the water and that helped him feel a little relief from the relentless tug of gravity. As his muscles grew weaker from DMD, any rest was a good rest.
I always loved sitting with him, playing with toys on the edge of the tub. Whenever I spent time with Mitch or my other boys, the little boy in me would emerge and we would get lost in imagination. I could care less about a football game or stretching my legs to the news … my world was (and remains) my family. In an instant the bath was no longer a tub, but an ocean with an ever changing landscape of bubbly mountains. The faucet became a mammoth waterfall and the various bottles of shampoo, towers to a soapy fortress. Our adventures were epic and endless.
I'll never forget the sound of my son’s voice pointing to the tender spot around his PICC line saying, “Dad, I wish I didn't have to have this.” He paused a moment, catching his short breath and said, “Well … at least I’m alive.” I smiled softly as my eyes gushed with tears and then ran down my face. I kissed his forehead and quickly excused myself, then slid my back down the hall and wept like a child.
Little Mitch was just glad to be alive yet I found myself wanting for death because losing him hurt so much. I pleaded that night to my Father; I cried out like a child and wet my pillows with my tears. That night, and endless nights since, I visited the darkest parts of the human soul.
Those words will haunt me the remainder of my days: “Well, at least I'm alive.” Mitchell’s words were a declaration of gratitude for what little he had, not a complaint about what he didn’t have. If ever I’m tempted to complain or get discouraged, I will remember those fateful words of my son … “At least I'm alive.”
Some might ask why I continue to post stories such as this … stories wrought with profound sorrow and loss. It begs the larger question as to whether revisiting painful moments like this agitates a wound that may otherwise heal if left untouched. But, what does it mean to not touch the wound?
The truth about grief, especially the loss of a child, is you can never not touch the wound. That is a fiction, in Shakespeare’s words, “told by an idiot.” Not a day passes I don't think of little Mitch. Were you to ask any parent who lost a child, no matter how many years have passed, you will most likely hear them say what I just said; that not a day passes they don’t think about their lost child. Not a single day.
Every day, those who grieve the loss of a child touch the wound. It is normal. It is unavoidable. It is part of healing.
I think the key to processing grief isn't about not touching the wound … pretending it doesn't exist. That’s impossible. Rather, it is how we touch and dress the wound that matters. I can say with confidence, every day I'm healing on the inside. Yes, my heart is still broken and tears flow regularly – but I'm not as broken as I was a year ago and I'm grateful for that. Make no mistake, I'm still broken … broken in ways that are deep and rending and will take a great deal of time to mend. But I'm mending … and guess that’s the point of healing. Progress, however fast or slow, is progress.
At least for me, part of my own grief journey is journaling. I don't write to fixate on sorrow. Instead, I write to process these moments in my own mind and heart and determine what meaning they have for me. With each painful moment I address the pain of my wound, then I dress my wound with meaning and context. That, with Heaven’s help, is how I choose to heal.
Though the pain of losing a child is so great at times I may wish for death, I seem to always come back to the thing my son figured out at the age of ten, “At least I'm alive.”
I am alive … and I intend to make the most of it.
A few years ago an employee of mine was getting married, and many of the people with whom we worked came to his wedding reception. Bruce Newbold, a dear friend, and colleague of many years came to the celebration. He no longer worked with our team but because we were all friends, he came not out of social obligation but of love and friendship.
“Heaven’s hand, although invisible at the time, was deep in the tapestry of our lives.”
The summer sun was about to set, and the wedding reception was nestled in a beautiful garden, deep in the shadow of a tree-covered hill. The air was comfortably warm, and it was another one of those perfect summer evenings you wish you could bottle up and save. I took a deep breath and drank in the moment, grateful for all that was – seen and unseen.
As friends and family of the newly wedded couple arrived, I began to see some of our colleagues and friends arrive, too. When Bruce and his lovely wife showed up, he was quick to say hello and offer his love to our family. Bruce had a tender place in his heart for Mitch, and I remember being so moved when I saw my friend give Mitch a loving hug. I could tell by the look on my son’s face that he felt special. Immediately I fought back the tears because my heart was filled with gratitude. I think everybody deserves to feel important and valued – and on this day Mitch felt all of that and so much more.
Bruce has a special gift of making people feel valued – but more importantly, he causes them to feel they are enough, just the way they are. Mitch sometimes wondered if he was enough … after all, he couldn't run and jump like other boys. In his little mind and heart, he sometimes wondered if he was worth less than others who could do things he couldn't. Mitch yearned to be like “regular kids.” On those occasions, I remember telling my son, with tears in my eyes, that I loved him no matter what. I reminded him that we are all mortal and flawed … and though imperfect I loved him perfectly. I didn't use the words, “you are enough” because I didn't know them at the time – but he knew my meaning, and it was the same.
I wonder how often people live out their lives wondering if they are enough … whether they measure up to some arbitrary or unreasonable set of ever-changing standards. Sometimes it helps to be reminded we are so much more than our mortal bodies and that we are just visitors in this place.
Without uttering a sound, Bruce speaks in ways more powerful than words … saying again and again, “You are enough.” Bruce has the gift of lift- and that’s just what he did for little Mitch on this day and many days before and after.
At the moment of this photo, my son’s fatal diagnosis was far from my mind. Mitch was healthy and seemed to be doing better than anyone expected. It was always the quiet prayer of my heart that somehow, some way, he would be spared. To my great sorrow and without mercy, Duchenne Muscular Dystrophy stripped my son of strength and eventually life.
I cannot look at this image and not sense a strong impression that there was so much more happening than I realized. Heaven’s hand, although invisible at the time, was deep in the tapestry of our lives. You see, this man was more than a friend to our family, he also played an important role in Mitchell’s Journey and became an instrument of God in ways I may never share publicly – for some things are too sacred to share. It will suffice to say, this good man and this little broken boy … my little boy … have some heavenly ties that both break my heart and sew it back together again.
I am grateful for those who, like Bruce, have the gift of lift. For they lend a helping hand to heavy hearts and souls that are lonely or sick. And on dark days when I'm discouraged and want to give up, when I struggle and wonder if I measure up, I think of my son, and then my Father and I hear a heavenly whisper, “You are enough.”
I thought I had grown accustom to the emotional whiplash that is felt when someone you love is on hospice. One moment you think the nightmare has ended and the next you are reminded it is only just beginning. So, as I sat with my tender son who leaned into my arm, I wondered quietly if the doctors had it all wrong … that perhaps we dodged a bullet. Suddenly my son moved and I saw the cables coming from his arm … cables that reminded me it wasn't a dream, but that I was living my worst nightmare. I didn't realize how nightmarish grief would soon become.
Baby Marlie, ever the faithful comforter, sat patiently and lovingly on Mitchell’s lap. She was always quick to kiss his little fingers ever so softly, which Mitchell loved so. Though my heart sank, I realized I was in the presence of two tender beings who were meant to be together – even if only in passing. One sick little boy about to die and travel to that place beyond the hills, far from mortal view; and a newborn puppy who had just arrived on a mission of mercy and comfort, a little friend who would stay behind after Mitch left us to comfort our hearts weary with grief.
These two little ones were unaware they were passing each other in opposite directions, but for a moment they gave each other comfort, and I thank God for that.
Though I have seen many tender mercies along Mitchell’s Journey, evidence of God’s love and care … a wondrous life filled with little lifts here and there … I cannot deny the immensity of the struggle. As we saw death approaching I knew it would be hard but I scarcely understood how hard it would actually be.
I remember, while in the depths of sorrow, kneeling at my bed in tears praying to God to free us from the struggle. I prayed mightily unto my Father and my words stretched far into the heavens begging for my son to be spared, and if not, that my son’s passing would be quick, if he were to suffer. I even begged God that I could take my son’s place – for I would gladly lay down my life so my little boy could live. Though the specifics of my prayers were not answered in the way I asked for them to be answered, I know my Father heard the intent of my heart and I know He felt after me and had compassion. I have come to understand His answers to my desperate pleas were wiser than anything my mortal mind could conjure up. Sometimes we must be reminded that He is God and we are not – and we must put our trust in that.
Ironically, my son’s death, as impossibly painful as it has been, has breathed new life into my soul. I have a sobriety about … everything; and losing Mitch has given me a deeper perspective on the purpose of life that I didn't have in my earlier years. Oh, I had book knowledge, but now I have experiential knowledge … and there’s a difference. Though I wish so badly to trade those lessons back for my son … I cannot have Mitch back – not in the way I want him. I pray that I don’t waste the life lessons my son has taught me at so high a price. For all that happens in this mortal place has a divine purpose in the grand scheme of heavenscape.
As I contemplate the struggle of grief and sorrow, of death and sickness and everything that hurts, I am reminded of the circumstances of a baby chick about to hatch: they must break through their shell on their own. Any attempt to chip away the shell for them, in an attempt to make their life easier, is not only counterproductive but often fatal. The very act of their struggle strengthens them so they can survive on the outside. In fact, the time it takes to break free is also vital for their bodies to adjust to their new life. Any effort on our part to hasten the hardship will rob them of their struggle, the struggle designed to make them stronger, and they often die.
Like those baby chicks who struggle to break through, I know at some point I will come out on the other side of this stronger. While I might be tempted to pray to God for an easy way out … that He might chip away the shell of hardship and sorrow and hasten the struggle, I know better. Instead I pray that He gives me strength equal to the task - for I know it is in the struggle we are made stronger. But what a struggle it is.
I am a weary traveler on a broken road. I don’t feel strong - in fact, I'm weaker than weak. I often collapse in sorrow and grief, and when I’m alone, I quietly weep. But like those baby chicks that are destined for a life on the other side of struggle, I will fight on. God willing, I will fight on.
If you ever need someone to paint your puppy like a panda, I just discovered I'm not your guy. Mitch loved pandas and he would have probably giggled at dad-fail #1,000,002.