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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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One of my favorite memories with our young kids was sitting on the porch on a hot summer evening eating popsicles and enjoying the approaching sound of crickets. I can still smell their freshly shampooed hair and feel the softness of their pajamas – just out of the dryer. When I look at this photo, I’m reminded of Gretchen Rubin’s observation of raising a family, “The days are long, but the years are short.” Oh, how the years slip by.

One hot summer evening, Mitch tapped my shoulder and said, “Dad, get some Windex and come check this out. Something weird is happening.” Mitch held my hand as he led me toward a light along the edge of our driveway.

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When we were about 10 feet from the light, Mitch whispered, “Shhh, Dad, … listen.” We could hear a faint buzzing noise, and the closer we got to the light, the louder the sound became.

Mitch pointed to the silhouette of a hornet busy building a home in the warm embrace of the light. “I think he’s building a house in there, Dad,” Mitch said with the tone of a detective. Mitch also knew that a generous spray of Windex on a bee sting helps take the pain away. Always prepared, he was a good little Scout.

“Should we dig it out?” I asked. Mitch furrowed his brow as if to weigh the options. “Let’s investigate.” He said. Mitch put his hands on his knees as he bent over as he looked more closely. “I don’t want to hurt them, but I’m afraid they’ll sting me.” Mitch was right – hornets can’t be domesticated, and all the benevolence in the world won’t change that. So, we carefully placed a net around the light and gently removed the growing nest. “Dad, will you put the nest in the secret forest? That way, they can make a home up there.”

With that, I ran to the top of our yard and gently placed the hornets’ nest at the foot of two large boulders – far from where the kids would ever play. The next morning Mitch asked if I’d check on the nest; all the hornets were gone. “Oh well, at least I’m safe now.”

At an early age, Mitch gained a healthy respect for the things that would hurt him. Because his muscles were weak, he was always prone to trip and fall; he lacked the coordination and strength to break his fall – so pain was often his companion. I was ever moved by Mitchell’s compassion toward insects and every living thing. He knew their nature – and while he didn’t want to hurt them, but he was wise enough to keep his distance.

Since losing Mitch, I’ve tried to emulate his kind-hearted way of being. Yet, we’ve encountered some hornets on our grief journey. Though difficult at times, I had to remind myself that “hurt people, hurt people.” Remembering that truth doesn’t make their sting hurt less – it only reminds me that sometimes the healthiest thing we can do for our mental health is to remove the hornets from our lives. Like Mitch, I didn’t want to hurt them – but I had to create safe distance so we could do the work of healing. Thankfully, there haven’t been many of them.

Even though we removed the aggressive hornets, we’ve experienced the sting of indifference from people close to us: the impatience that we haven’t ‘moved on’ (as though we could magically stop loving our child), the Monday-morning quarterbacks, the pious pontiffs, and the well-meaning but misinformed. As if grief isn’t tricky enough.

What Mitchell’s life has taught me is that strength comes through struggle – and we’re often better because of it. Perspective has become my Windex – and when I feel a sting from someone fumbling or someone mean, I apply it generously. At least for me, that’s the only way to be.

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Toward the end, I couldn’t kiss my boy enough. And when Mitch started to sleep a lot, I cuddled with him so he would never wake and be scared he was alone. There were times I wept so hard I shook the bed and woke him a little. I didn’t want to scare him – but in the quiet of my heart, I was terrified to lose him.

By this time, Mitch knew he was dying. At one point, he said, “I don’t think I can survive.” Those are some heavy words for a little boy to carry. When Mitch said that, I quietly turned my head as tears streamed down my face like Niagara Falls. I pleaded with God that I could take it all away – that I could die so my son could live. To my sorrow, life was not so kind.

I’ve spent the last several years examining grief. To this day, I still can’t conjure the words to describe the permanent trauma of watching your child slip through your fingers like a baby made of sand. I’ve tried to describe it in the past, but words are inadequate, much like trying to describe color to someone blind since birth.

I’ve discovered that grief is amorphous – and there are many faces of grief. Each face is my teacher. Here are five among many:

GRIEF THE DRUNKARD

Sometimes grief comes barging in the home of your heart, drunk and belligerent—an uninvited houseguest who always has keys to the back door. However much you try to change the lock, grief knows the locksmith. This kind of grief is difficult to manage because you can’t make sense of or negotiate with it. Instead, you learn to sit with it, help it calm down, and let its slurry sorrow burn off. The sooner you listen to what it has to say; the sooner sorrow turns sober.

GRIEF THE SERGEANT

Other times, grief is a demanding drill sergeant – bent on working your already weary heart to the ground. Sometimes the sergeant bursts onto the stage of your mind and heart while you’re in a meeting – it doesn’t care who you are or what you’re doing … it only demands your attention. Quietly, you lift grief through an emotional obstacle course as your knees and heart buckle. I’ve learned to listen to the sergeant and “do the work” – though painful; it always makes me stronger.

GRIEF THE GHOST OF REGRET

Regret is inevitable – and being human, we all carry regret. That thing we didn’t say but wish we did, the opportunity to spend time but didn’t, and a-million-and-one dumb decisions that lead to some form of regret. This face of grief isn’t just haunting; it’s horrifying—all those missed opportunities are gone forever. However, I’ve learned to sit with this ghost and find ways to turn regret into resolve. Resolve to do better and to be better. Then, that ghost fades away – and I’m all the better because of it, for I’ve learned to live a better way.

GRIEF THE PRETENDER

Sometimes grief acts like a pretender. I’ve seen others hide behind the veneer of their faith – as if being sad is a sin or a betrayal of sacred beliefs. They flex their muscles and try to seem strong, even super-human. “It’s been a month, and it’s time to move on. I must show everyone that I’m righteous and strong.” That only teaches ourselves and others to hide under a thin sheet of inauthenticity. Grief, the Pretender, is an imposter, a shadow pretending to be light. Sorrow is not only human but also our birthright. I would sooner trust a broken soul than a perfect one – for one is true, and the other is not. Losing someone we love hurts, and it hurts a lot.

GRIEF THE DIVINE TEACHER

Of the many faces of grief, this one is my tender teacher – for it has the power to turn vinegar into water – but it is the most solemn work of all. It asks deeper, more searching questions. This face of grief isn’t at all interested in “why me” or “why Mitch?” but instead turns the mirror inward. It asks the hard questions like, “Why not?” or “What makes you an exception to human suffering?”

I then bow my head in reverence of everyone who suffers. In this reflection, I have learned to look at my own soul and ask, “Yes, it hurts, but what am I to learn from this?”

Grief is a magic mirror, really, and though it appears to wear different masks – each of them are part of a greater whole. And if I’m listening, this divine face of grief shapes my heart and contours my soul.