View fullsize

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.

---

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.

View fullsize

Fall was almost in full swing when Natalie and I took our kids to a nearby park. We decided to visit one of the older parks, where the trees were mature, and blankets of earthy leaves covered the ground.

Mitch was known to do a funny, signature skip and hop when he was happy. I’ll share a video of that soon. Because his muscles were growing weaker each day, his happy skip became more uncoordinated and labored as time went on. That never stopped him from doing it, however. In fact, as his body grew weaker, his sense of happiness seemed to grow stronger. I always enjoyed watching him at the park; sometimes, in the distance, Mitch would have a conversation with himself, then suddenly it was as though he was struck by a bolt of joy and he began skipping out of the blue.

On this occasion, when Mitch tried to skip, his legs gave out, and he fell. Ethan, his older brother, quickly reached down to see if Mitch was okay and offered to help him up. My heart swelled with gratitude for my family and the lessons of love and service my children continually taught me. At that moment, I was overcome with an impression that despite the hardship our family was facing, Heaven was using that experience to help shape us – not just Mitch, but all of us.

Over the last few years, I’ve watched my surviving children cope with grief in their own, unique way. It has been a difficult and sometimes dark, treacherous journey. I don’t write about those experiences because I respect my children’s privacy – but I will say, it hasn’t been easy. Sometimes the grief journey was made more difficult by outsiders meddling, other times our grief was made complicated by inexperienced psychologists, forever shutting the door of a young mind in need of that kind of help.

In my book, which will be completed soon, I share some of the challenges we faced and what we learned because of it. I hope it helps others who navigate their journey with loss as we share a kind of “if we could do [certain things] over, we’d do this differently” observations.

I wish weren’t so, but our troubles after Mitch passed were just beginning, and we had to navigate a labyrinth of issues that were as complex as they were bewildering. During that difficult time, I remembered F. Scott Fitzgerald's observation on the difference between trouble and discouragement, “Trouble has no necessary connection with discouragement. Discouragement has a germ of its own, as different from trouble as arthritis is different from a stiff joint.”

I am certainly not immune to discouragement – and sometimes trouble stirs those feelings up. But when I remember Mitch, who never let his troubles make him feel discouraged, I’m reminded to step back and recognize that trouble is only temporary. Discouragement, if not managed, can become a chronic condition.

As I consider this tender moment between little brothers – I’m reminded that no matter my troubles, I can step back and find gratitude for something. In fact, I can find gratitude for many things. Anymore, I’m beginning to see that it’s not trouble that weighs us down … it’s discouragement.

I can’t do much about trouble, but I can find ways to rise above it and be grateful for life.

Without warning, an enormous clap of thunder exploded, and my boys and I jumped with fear. A dark storm was brewing, and the afternoon sky had become almost dark as night. The campfire we were just about to start would have to wait until the downpour passed. From the looks of it, it seemed the storm was going to linger a while as the cool mountain wind almost ushered us into our tent for protection.

Mitch squirmed into his sleeping back and wiggled around as if to snuggle deeply into the mound of soft things that surrounded him. I chuckled a little because I did the same thing when I was a boy, and at that moment, I remembered how fun it was to be young. I looked upon my boys with a touch of envy. Mitch pulled his hands behind his head, his face bearing a light mustache from chocolate milk, and began to smile softly. "We're safe and sound, right, Dad?" Mitch said with a mixture of confidence and concern. "You bet, Mitch. This is going to be a crazy camping adventure." Mitch smiled and said, "I know you'll keep us from floating away."

Within minutes, we could hear the occasional pitter-patter of raindrops on the tent. A few minutes later, a burst of raindrops assaulted the side of the tent as the wind began to pick up speed. Soon, we were in the middle of a torrential downpour. I worried if our tent was rated for an hurricane-like storm. Mitch nudged my arm and said, "Doesn't this remind you of Winnie the Pooh and the Blustery Day?" Mitch giggled as I peered nervously out the window, keeping an eye out for a flash flood.

We knew there might be bad weather, so our backup plan was to have a den party in the tent. So, I pulled out a portable DVD player, broke out some snacks, and pulled up our covers as the boys and I watched a movie under the thinly veiled safety of our tent.

I didn't sleep well that night. Aside from a few breaks in the early evening, the rain never really let up. So, I laid in the tent in a trance-like state – somewhere between sleep and wakefulness … sitting up every hour to make sure the boys were dry. By morning the kids were rested, and I was hammered.

Of all the moments in life, the ones I remember with great fondness and nostalgia aren't the time's things went perfectly. Instead, the moments I treasure most are when we struggled and found our way through a hard time. Don't get me wrong; perfect times are just that … perfect. I love and appreciate them for what they are; honey is honey. But the taste of lemonade is never so sweet as when you must work to make it so. Perhaps that's why hard times often end up becoming our best times, in the end.

This photo of Mitch reminds me that even in our difficulties, we can make the best of what we've got – and somehow, someway, we'll look back and be glad we lived the life we lived. In every struggle, there's a price to be paid; but in the end, that's what makes the sweetest lemonade.

The look of panic on my sweet wife’s face is forever etched into my mind. The time we feared most had come. Mitchell’s urine bore evidence of catastrophic organ failure, his vitals were on a steady decline and we didn’t know if we had days, hours or minutes left with our son.

“The trouble with time is we always seem to think we’ll have enough of it. I don’t know why we’re built that way ... that mostly in times of trouble when we stand to lose everything, do we re-discover everything that really matters.”

— Christopher M. Jones | Mitchell's Journey

The drugs we administered to Mitch were both a blessing and a curse; a blessing because they kept him from suffering from the pain of organ failure and a curse because they kept his mind foggy and distant. We were blessed with the greatest hospice nurse to ever walk this earth. She was exactly what we needed during this dark time … a tender mercy for which I will thank Heaven the remainder of my days. She was there to guide and council us every step of the way – but because she didn’t live with us, we were left to face the majority of our time alone with our boy. That scared us.

Prior to hospice, all we knew was children’s Tylenol and sunscreen … then suddenly we were administering morphine and other powerful drugs to our child. All we wanted was to go back to the days of macaroni and cheese and band-aids, scraped knees, and children’s books. But that was not our lot in life.

I’ll never forget our first encounter with our hospice nurse. She was kind, compassionate, strong, and direct. In a way, most unexpected, she was soothing to Natalie and me … parents who felt very much like children, fragile and frightened. This hospice nurse reminded us of what our DNR (Do Not Resuscitate) form meant. She told us that if Mitch was is in trouble that we were not to call the ambulance, perform CPR, or any procedure that would prevent death. Now that he was home on hospice, her job was to help our son’s transition of death happen comfortably. After this good nurse left that first day, I remember going to my bedroom, closing the door and falling to my knees. I wept and wept. I prayed as I have never prayed before. “Take me!” I plead with my Father, “Please, take me instead. I would endure any suffering if it spared my son.”

After a period of deep, tearful grief, I found myself back on my feet again. With feeble knees, I tried to bear the burdens of my family on my shoulders – but I soon realized I could not take away my family’s suffering. I could only walk with them and love them and do all I could to support them. Though I wished to carry it all, I realized that was not the purpose of life and that we must all experience joys and sorrows on our own if our souls are to grow truly.

Though I tried to be strong for my family, this good woman, my dear wife, was the strongest among us. I will always honor her for her strength and wisdom during this impossible time. I stood then, and continue to stand today, deep in her shadow.

So, there we sat on the edge of the abyss, our son hanging by a pebble and slipping into the darkness. I sat on the edge of his bed in tears, wondering how I could have been a better husband and father. I made plenty of mistakes, and those mistakes weighed on my soul for a season. I wasn’t so upset with the occasions I might have been more patient with my children – for I knew we all make those mistakes, and I always made things right with my kids. Instead, I began to contemplate the time I wasted pursuing lesser, trivial things. I wanted to go back in time and invest that squandered time into my family. It wasn’t a lot – but enough to hurt. Enough to cause a little regret.

The trouble with time is we always seem to think we’ll have enough of it. I don't know why we're built that way ... that mostly in times of trouble when we stand to lose everything, do we re-discover everything that really matters.