As Mitch inched closer to the abyss he became more emotional. Already physically weakened by the catastrophic muscle wasting of Duchenne Muscular Dystrophy, he was now suffering from low oxygen because his heart was barely working. The heart is a muscle, too. Simple tasks that were once easy for him to perform were now nearly impossible. He didn't understand why Legos were suddenly so perplexing. Even his fine motor skills were greatly reduced. Mitch would weep because he wanted to be a little boy and this invisible monster had not only taken away the strength of his muscles but now his heart, which affected his mind.
In this photo Mitch was trying to build a Lego set that was gifted to him by a Mitchell’s Journey follower. He was so excited to build it and was touched that so many people cared. When he couldn’t make sense of the instructions he began to weep. I immediately set my phone down and held my son in my arms and kissed him and told him Daddy would help him. Mitch eventually calmed down and asked, “Dad, why can't I build Legos anymore? They are so easy. I don’t understand.” I responded softly, “Oh, Mitch, your heart is so tired and in need of rest. And your mind needs your heart. Because your heart is tired, so is your mind.” Mitch closed his eyes and rested a while. I wish I could have held him in my arms forever.
Mitch was remarkable in his fight to survive. His hospice nurse was startled how his body fought valiantly compensate for organ failure. “Your son is a fighter”, she said, “one of the strongest I've ever seen.”
Fast forward a few weeks and I would be reeling in grief over the death of a little boy who was in many ways a best friend to me. Though I was his father, the little boy in me lost a dear friend, too. And that hurt. A lot.
Then, in May of 2014 I received an email from a woman on behalf of her adopted son, Marco, who was an MMA fighter. She said her entire family was touched by Mitchell’s story and wanted to help raise awareness in honor of my son. She asked for permission to put Mitchell’s Journey on his T-Shirts, fight shorts and banners. I gave them permission and sent her the logo files so the printers could do it right.
I wasn't sure what would come of it, but something inside me felt it was right. A few months later I would then watch as this good man stand in a ring surrounded by a crowd of cheering fans. Marco had a look of determination in his face that was sharp, fierce and focused. By his mannerisms it was clear he believed deeply in God and wanted little Mitch to know he was fighting in memory of him. At that point the outcome of the fight didn't matter to me … for Marco already won. The bell would ring and in less than 2 minutes the fight was over and Marco was victorious. He fell to his knees and thanked God for the wind behind his sails.
What happened next brought me to tears. Marco would then take the microphone, undefeated, holding his belt and thanked God, his team. He then asked 14,000 people to look up Mitchell’s Journey and learn about a little boy who died from DMD.
Tonight, an hour from now in fact, Marco fights again in honor of Mitchell’s Journey and other boys who have DMD. What these boys lack in physical strength, Marco has in spades. That he gives his talents and strengths to the benefit these boys … and in honor of my boy, my best little friend, humbles me to my core.
Unlike Mitch, Marco has all the muscle and strength anyone would ever need. But Marco also has a heart … and a most sincere one at that. Regardless of tonight’s outcome, Marco, you have already won. From the bottom of my heart, thank you for remembering my son.
One more thing ...
There is another group who fights just as fiercely and honorably as Marco. Pat Furlong and Parent Project Muscular Dystrophy ... they tried to save my son from heart failure. I honor them for their continued efforts to improve cardiac care in kids with DMD. Here is a link to their page in honor of Mitch: https://secure2.convio.net/ppmd/site/Donation2;jsessionid=897727A6001B3EB4FE400EF84444784A.app272a?4380.donation=root&idb=1525494756&DONATION_LEVEL_ID_SELECTED=1981&df_id=4380
Night had fallen, and so had our hopes for one more day. My weary, tattered son lay in his bed unable to move and barely breathing. Within the last 12 hours his heart had greatly enlarged which caused his chest to protrude; he looked deformed and it was disturbing to see. The candle of life was dim and flickering by the winds of change. I could feel the coldness of death lapping at my feet and I was terrified. Even though night had long since fallen, more than the sky was dark.
I had dozed off on the floor of Mitchell's room, next to my wife. Fatigue had taken hold of me ... I was so very tired. As I was beginning to drift into a deep sleep I awoke with a distinct impression to tuck my son in - something he asked me to do every night. "Hey Mitch ..." I said in a soft whisper, "I'm tucking you in, just as you like it. I love you son, so very much. Don't be afraid; remember what we taught you. Everything is going to be okay."
I'm told that hearing is the last thing to go for those who are dying. For reasons I have earlier posted I know my son heard me. Those were the last words Mitch heard in mortality. Within 30 minutes of that gentle whisper and kiss on his face, my precious little boy passed away. I hope he wasn't scared. I hope.
We've also been told that children who are about to pass away often wait for their parents to leave the room or they linger for permission to go because they don't want to hurt or disappoint. Knowing this, I wanted my weary son who so fought valiantly to live; this little boy of ours … who always wanted to make us happy … I wanted him to know that we loved him and that all would be well. No sooner had I drifted back to sleep Natalie had got up from the floor to administer Mitchell's medicine, which he was now receiving every two hours.
I'll never forget the sound of Natalie's voice. Her words pierced the silence of the room like a samurai sword through paper: .... "Chris." Suddenly, with the thunder of 1 million exploding suns, I awoke that instant only to see a mother's face that looked confused, scared and deeply bereft. I got up from the floor by Mitchell's bed and placed my hand on his chest. Nothing. Our precious son, our broken baby, was gone.
We could scarcely believe our eyes. Lying on Mitchell's bed was the form of a little boy we raised since birth and loved with all of our hearts. His body was still warm and it seemed as if we could just shake him a little as if to wake him from a deep sleep and that all would be well. But Mitch had fallen into a sleep from whence there is no return.
As each hour passed we could feel his arms and legs get colder. Soon, only the center of his chest was warm and it was cooling quickly. Then his body started to change. At about 3:45 AM I called the funeral home to pick him up and they were at our home within an hour. I asked them to hurry because I wasn't sure I could watch my son's body continue down the path it was heading.
Processing the death of your child is something of a bi-polar experience taken to the greatest extremes. One moment you feel peace then suddenly you confront feelings of horror – the likes of which you've never known.
With all the lip service we give our religious beliefs, there is nothing so exacting as to see your child die and then to peer into the dark abyss of death. I have been taught that: "Faith, to be faith, must go into the unknown ... must walk to the edge of the light, then a few steps into the darkness." My son's journey, Mitchell's Journey, has forced my wife and I to step into the darkness … a darkness that is as heavy as it is pitch.
Yet, I've discovered something in all this darkness. Once I allowed my spiritual eyes to adjust and look upward, I started to see the stars. Against the backdrop of all that is black and frightening I can see little flecks of light, tender mercies that were always there but I didn't have eyes to see them. And the accumulation of these tender mercies present themselves like heavenly constellations so I can find my way. If I look down or to the side, all I see is darkness. Like ancient navigators who looked to the heavens for bearing I can see the fingerprint of God in all that has happened and I now have a sense of direction. I know we're not alone.
To be clear, it is still nightfall and my heart is heavy with a sinking sorrow. There are days that are blacker than black and the waves of grief threaten to pull me under. But when I look to the heavens I can see.
I can see
Not long after our son passed away a compassionate follower of Mitchell’s Journey asked me for a sample of Mitchell’s handwriting. She had been following our story and felt compelled to give my dear wife something to comfort her weary heart. This is what she made - exactly as Mitch wrote it on paper just a few months prior. This kind woman, now friend, carefully mailed it to me so we could surprise Natalie for Mother’s Day. I offered to pay her for her kindness but she insisted on giving it to my wife as a gift from her heart.
When Natalie looked upon this for the first time her eyes filled with tears because she recognized Mitchie’s handwriting.
This little memento is an echo of Mitchell’s love for his mother. I’m forever grateful for this kind woman, this Good Samaritan, who felt after my grief-stricken wife on the edge of a broken road. Katelynne didn't need to do or say anything, but she did anyway … and her little act of love did a lot.
This is her Facebook page: https://www.facebook.com/SugarplumsJewelry
When Natalie wears this necklace, she often looks at it as if to look upon her son, or at least a breadcrumb he left behind … evidence this little boy lived and loved his mommy.
I’m grateful for this Good Samaritan who took the time to stop; who reached out with a little love and helped my wife a lot.
After little Mitch realized his hand was going to be okay his mother picked him up and held him as only a mother knows to hold her child. To a young one, there is a certain comfort that comes from blankets and Sippy Cups, but then there’s the comfort that comes from a mother; and no blanket on earth can replace the warm embrace of a loving mother.
Though not an envious man, I am sometimes sorely tempted, when I see the tender bond between mother and child. Though my heart loves deeply, I recognize there is a sacred place for a mother’s love. I wish I had a piece of that because it is beautiful beyond measure. Instead, I’ll take what I can get while sitting on the sidelines and consider myself blessed.
So there I stood, in my dorky way, trying to comfort my son. I didn't stand a chance against the blanket and Sippy Cup, let alone his mommy’s embrace. I made funny faces and danced like a fool for him and he started to chuckle. His smile, this very smile you see here, and eyes shrunk-wrapped in tears melted my heart. Though I offered a little sideshow entertainment for my boy, the real performance was already underway by his mother.
I think, on some level, I’m beginning to understand Kate Bush’s lyrics “I stand outside this woman’s work … this woman’s world. Ooh, its hard on the man, now his part is over, now starts the craft of the Father.” There is a sacredness to motherhood … something far beyond my reach. Though I do my best to be a good dad and husband, I am beginning to realize I am a small player on a much grander stage. However much I do my part, it is minor by comparison.
Neal Maxwell wrote, “When the real history of mankind is fully disclosed, will it feature the echoes of gunfire or the shaping sound of lullabies? The great armistices made by military men or the peacemaking of women in homes and in neighborhoods? Will what happened in cradles and kitchens prove to be more controlling than what happened in congresses? When the surf of the centuries has made the great pyramids so much sand, the everlasting family will still be standing…”
When we started our family we had no idea what we were doing. We still don’t on some level because each phase of child-rearing, at least for us, is undiscovered country. Yet we’re learning things each day that we try to apply in the things we do and say. I wish I could wield the parenting power my wife seems to shoulder so gracefully. Such is the power of motherhood, I suppose. I’m just an ordinary dad with more weaknesses than most. So I’ll just try to pave the way, moving obstacles where I can and make life a little easier for her each day.
Our journey of grief, like everyone who hurts, is painfully unique. It’s a delicate balance of looking forward to sights unseen, while giving myself permission to hurt because I’m still a human being. That’s the thing nobody told me … healing hurts.
Though I’m still hurting, I’m also healing … and that is a wonderful, wonderful feeling.