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Journal Entry: February 10, 2013

Today was a mixture of grief, peace, fear, and love. Mitchell was so happy to be home. It was almost dreamlike. There were no hourly stats being taken by a nurse. No more chaotic mess of cables wired to his body effectively chaining him to his bed. No monitors with alarms that signal the biological horror show that is playing out under the surface of his skin. Just smiles and 100% focus on family.

For the most part, Mitchell was comfortable today. He was able to play with one of his best friends. We made more Legos, cuddled, played UNO, built a base in Minecraft, had lots of conversations, played other video games, watched a movie, and just spent time together. At this very moment, I can hear his sweet little voice in my mind …. as if it were an audible sound. I love the sound of his voice … the way he thinks.

So we try to live each moment as though it were our last. We will only have now – for tomorrow will be different, it will be less. Certainly, less of something and more of another . . . but it will be less, nonetheless.

To me, it is strange to think that ~15 years ago there were 4 less people on the earth . . . and I was quite content without them. But now that I have them, I cannot imagine a day without them – not even a minute. There’s the saying: “Making the decision to have a child - it's momentous. It is to decide forever to have your heart walking around outside your body.” I always admired that quote – but now it has taken on a much deeper meaning.

Mitchell’s left eye became very blurry twice; once in the morning and a second time this evening. The second episode was more intense and lasted longer than the first. Our nurse informs us that his profusion is so low that organs will begin shutting down very soon. It looks like his vision may go soon. He is getting dark rings under his eyes. We’re also told it won’t go away and will get worse. Sometimes his chest pounds so hard it looks like there’s someone inside his rib cage trying to violently punch their way out. Those are scary times. Very scary.

The truth is, grief comes in massive waves … almost instantly …. and without consideration or apology. And between the agony of the inevitable and moments of calm, I sometimes feel a panicked rush ... the horrific feeling that I need to race to do something else for my sweet little boy. Oh ... how my heart wants to... I yearn to save him. My mind understands what’s happening and why. But my heart sometimes desperately searches for a way out … something we missed. Then, it occurred to me in a moment of profound spiritual peace … that perhaps in all my rush to save my boy, a greater purpose to all this suffering is at play … and in the end, he will be the one who saves me.

There is a transformation occurring. Something profound. His life, his sweetness, his goodness … it is changing me. And I want to be a better husband, father, friend, and human because of him. His short and tattered life has a divine purpose. And while painful now, all will be made whole in the end.

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NOTE ABOUT THIS ESSAY:

I’ve been getting messages from a lot of readers lately sharing their grief, wondering if they’re normal (if there is such a thing), and if the night will ever end. My heart goes out to everyone who suffers in whatever way they suffer. I wish I had the power to heal others – that is my heart’s deepest desire.

I thought I’d share a sacred journal entry exactly 8 years ago today. This was my grief. This was my son. I share this journal entry for those who sit on the edge of significant change. I stand with you in the sacred space of your suffering.

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Somehow, he knew. It was written in his eyes. With each passing day, Mitch seemed to sense his time was coming to an end.

A few days after Mitch was home on hospice, he asked his mom if he could have an early birthday. "My real birthday feels so far away. It just feels so far away…" he said in shallow breaths. That request was out of character for Mitch. He was a boy of routine and rigor; he followed rules carefully, always took his turn, and never asked for more than he had. However small his cup may have seemed compared to others, to Mitch, his cup was always running over. Mitch asking for an early birthday told us he was listening to something deep within – as if his soul was preparing for the great transition from this life to the next.

With tears running down her face, Natalie made a few calls, rallied a group of his best friends, and hosted a birthday party two days later. My sister, Diane, a tender and loving soul, came over and filled the room with balloons that hugged the ceiling and made everything seem light. I had never thought much about balloons until this day. Seeing the joy it brought my son changed all of that. To this day, I look at balloons with a child's eye.

Tiny Marlie sat faithfully on Mitchell's lap and was a great comfort to him. I thank my Father that He cared enough about my son (His son) provide little tender mercies such as that. Experiencing my son's death has been utter hell, yet I can see a lot of heaven's hand during that difficult time. I know we were not alone.

So, on this impromptu, sacred celebration of Mitchell's birth, I sat against the wall while all the neighborhood boys gathered around our son and played games. From years past, an old friend of mine had compassion and arranged to have a local sports mascot surprise Mitch. He didn't need to do that, yet he did, and his act of love and compassion was a gift within a gift. Mitch laughed and smiled, and for a moment, it felt dreamlike, as if everything was normal again.

Almost like shifting temperatures in the ocean, I could see in Mitchell's face a shifting tide of emotion; one moment, he was a little boy with his friends, and the next moment he was swept away to some place a great way off. A place that was unfamiliar to him, a place not as warm as the world he had grown to know. Mitch sensed things were changing, but he didn't know what.

Knowing Mitchell's tendency to over-worry, we would wait a little longer to tell our son. That was our gift to Mitch: to be a child for just one more day. He would soon confront the coldest of all realities and face his impending death with courage and more care for his mother's broken heart than his own.

Not many days later, Mitch would lay in his bed, struggling to breathe, saying, "I don't think I can survive." A few minutes later, Mitch closed his heavy eyes and drifted to sleep. Natalie wept silently wet our son's hands with her kisses and tears. Then, in a moment of profound triumph, this little child became more a man than I could ever hope to be when he awoke and told his mom he would be okay.

Looking back, I wonder if Mitch wasn't interested in getting gifts after all. Maybe that birthday was his gift to us. One last celebration of all that was our son. One last chance to tell him how much we cared.

I love my son. Of all the gifts I tried to give him, none compared to the gift he was to me. The gift he still is to me. Though this gift is heavy to carry, each day, it is making me stronger. Though my wounds are still tender to the touch, I am learning how to tend to wounds that medicine cannot entrust.

The more I examine my son's difficult journey, the more I recognize gifts within gifts. Someone once said, "it is less important what happens to us than what happens within us." I wonder if when we finally see what lies beyond death's great abyss, we may be surprised to understand pain and struggle was, in fact, a gift within a gift. Nothing of value comes easy. No, not a thing. I suppose it's as true on earth as it is of spiritual things.