I remember gently waking my daughter, who was deep asleep, to let her know her little brother had passed away. You know those rare moments in life that you remember with vivid detail? The smells, the color of light, the layout of a room, and precisely what you were doing at that very moment, something big happened … those details of life that seem to crystalize in your mind. Forever. I remember, as a young boy, exactly where I was when I heard the space shuttle Challenger explode. I don’t remember anything else that happened that year … not like I remember that moment. I just remember crying as a young boy because I knew people were hurting over such a loss.

Well, this night was one of those moments I will never forget. “Ash,” I said with a whisper. She arose instantly, as if her body and soul knew something terrible had happened, “I’m so sorry, but Mitch passed away.” No sooner had I uttered those words than her eyes gushed with tears as she fell back to her pillow and wept.

Laura-Ashley faithfully loved and served her little brother, and they had developed a deep bond between them. I marveled how she balanced softness with strength – a testament that we, being human, are quite capable of being both. On the one hand, she would speak ever-so tenderly with Mitch, and you could tell she listened with her heart as much as her ears. At the same time, she would carry her not-so-little brother on her back with ease. She was strong yet tender … a beautiful blend of attributes I long to possess.

I took this photo on the California coast while on our last summer adventure with Mitch. He loved the ocean and was fascinated by the power of waves. Mitch couldn’t play in the ocean by himself at this time in his life because even the tiniest wave would knock him helplessly over. Where smaller children could play in the splash and foam of the ocean’s edge, those same waters were more punishing for him. Even the smallest wave threatened to knock him over. Any prolonged exposure to even moderately deep water, causing him to adapt to the ebb and flow of the current, would tire his muscles quickly, and he would most certainly drown if left to his own strength.

Laura-Ashley, this beautifully kind sister, sensing little Mitch wanted to experience the ocean again, heaped her brother on her back and began walking into the water. Mitch laughed and squealed as the waves rolled by and tickled his feet. At this moment, it occurred to me in ways it hadn’t before that there’s something very special about a sister.

As I captured them playing, I remember being washed over by waves of love and gratitude for my daughter and son. Of all the world’s greatest riches, none compared to the treasure of this moment with my children. They were a gift to each other, and their love was awesome to see. Love, after all, is the substance of life and the fabric of eternity.

When I look at my own life experience, sisters and mothers seem to balance out fathers and brothers.

I don’t know what it is, exactly. I only know the world is richer because it is filled with loving sisters.

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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.

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As Mitch began to drift away, I'd look at him with deep sorrow in my heart. I desperately wanted to scoop him up in my arms and take him to someplace safe. A place like the children's books we often read to him – a place of hope and happiness, joy, and dreams. My little boy once glowing bright with laughter and childhood had become a dim candle about to flicker out. The light in his countenance had been growing dimmer by the day, and I was greatly pained therewith. When I took this photo, I had the distinct impression we were no longer counting the days, but the hours.

I remember cuddling next to my son just after I took this photo. I held him gently but firmly and said, "I am so sorry this is happening, son. You are so brave. I think sometimes God sends us the little ones like you to teach us grown-ups what it means to be truly grown up. And Mitch, when I grow up, I want to be just like you." Mitch squeezed my hand and smiled softly. I kissed his cheek and held him close to my chest as he drifted away, soft as a feather, into an afternoon nap.

While Mitch slept, I wept.

I wept so hard the bed was shaking, and I worried I would wake him. The grief I knew then was but a foretaste of the pain to come. For death was the easy part … the echoes of emptiness and longing were a more painful hell yet to come.

I learned long ago it isn't productive to raise my fist to the heavens and wonder why we suffer. Instead, I learned to turn my ear heavenward, to listen for secrets to the soul, and learn what I was meant to learn. Too often, people get hung up on asking the wrong questions – and therefore get no answers. They ask, "why would God do this?" When we hurt, it can be tempting to shake our fists at the Universe and bemoan our circumstance as though we're being singled out or treated unfairly. But the last time I checked, life isn't fair, and it rains on the just and unjust. Why should we be the only exception? The other day I learned over 150,000 people die each day. Countless others will suffer all manner of tragedies. In the few minutes it might take to shake our fist at the sky and complain about or own lives, hundreds of people will have passed from this life to the next, and a great many more will mourn their absence.

The world is filled with grief and suffering. Some sorrows we bring upon ourselves. Other suffering just happens, whether from an act of God or simply life in motion.

At least for me, I've come to discover suffering and sorrow are an important part of life's learnings. Any more, I worry less about the origins of my sorrows – for what difference would it make? Surely God isn't caught off guard or surprised by the events in our lives. Whether He's the author of some of our sorrows, as a divine teacher, or simply a patient tutor as we struggle with life in motion.

He could change the course of our sorrows if He wanted to. Perhaps the fact He often doesn't remove our sorrows is the most compelling message of all. I stopped asking "why me?" and began searching myself and ask, "Yes, it hurts, but am I listening?"

So, as I laid next to my dying son, weeping in the deepest of grief, I felt a pain beyond description, a pain that left my soul weary, bruised, and weak. I didn't want my little boy to go, for he was my tender son, and I loved him so. Though I prayed mightily for his safe return, the answer I received was, "No, my son, for there are things you must learn."

Thus began my journey with grief, down a bewildering path in search of spiritual relief. And though I still hear the deafening sound of death's terrible toll, I have come to understand our mortal bodies are but clothing to the soul.