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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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Tiny Mitch reached up to grab a door handle that stood just above his head. He had an almost tangible curiosity about him this day – so much so, he would have seemed mischievous if he wasn’t so innocent. With a soft tug, his chubby hand and tiny little fingers began to pull downward. If you were listening carefully, you could hear the old springs in the handle ping and pong as rusty mechanics started to move.

To an adult, this was just an ordinary doorknob. To this little boy, that golden handle was a gateway to endless curiosities just beyond the finger-smudged glass.

Tiny Mitch didn’t realize I was following him, so I kept my distance and zoomed in with my lens. By this time in his life, he was so used to the sounds of my camera, he had no idea I was shadowing him. I followed him because I wanted to keep my tiny boy safe from harm … but I was also curious to get a glimpse into his little mind and heart. “I wonder what he does when no one is looking …”, I thought to myself.

As the door opened, Mitch walked outside … and, like a good little boy, he closed the door behind him to keep the cold Wyoming wind from stealing away the warmth of the cabin. Then Mitch crawled backward from the edge of the old wood patio, down a few stairs, and began to tromp on grass browned by an early winter’s chill. I waited patiently until his back turned, then I opened the door quietly and stepped outside. A kitty approached him, and Mitch began to talk to it in ways only a 2-year-old can know. Softly he hugged his furry friend and kissed its head. I smiled at Mitchie’s goodness and wanted some of that to rub off on me. After a few minutes of furry love, Mitch began to walk toward a bush that was home to a little bird’s nest, or so it seemed. He got on his tippy toes as he pulled a branch down only to see an abandoned nest. Mitch smiled softly, then turned to explore a pile of wood. He talked to himself and hummed nursery songs. At this moment, my heart broke open and poured out more love than it could possibly hold. I never knew how much love a heart could hold until that moment.

What I learned about little Mitch that day was how much he loved to be alive, even as a toddler. I also discovered anew how much little things matter. He found joy in the smallest of things. There wasn’t a flower he walked by that he didn’t lean in to smell softly. Not a furry pet he didn’t want to love, or a sunset admire. Mitch not only taught me how to love him, but how to love everything and everyone.

Later that night, I knelt in a prayer of gratitude for the gift of little ones. I thought I had known love before I had a child. But, I soon discovered a love so deep that it changed me from the inside out. Completely. Even still, when I think I’ve reached the furthest depths of love for my children, I find that it continues to deepen with each passing day. How deep that love will go, I cannot say. I only know my love is deeper than it was yesterday.

If ever I am discouraged about a personal failure or disappointment, this image gives me hope. It reminds me that, in the grand scheme of things, we’re all toddlers reaching to open doors and make new discoveries. And though we may be imperfect, our Father sees us reach and try, and we are loved. That is no small thing.

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HELP ME NOT FALL
"Dad, will you hold my hand? Will you help me not fall?" Mitch said with a sweet, soft voice. I reached out to hold his hand as Mitch leaned down and reached into the crystal clear waters that flowed from a natural hot spring. "It's like a bath! Do you think I could swim in it?" Mitch was fascinated that nature could produce such bathy warm water, for until this moment, he only knew the icy streams that came from snowmelt.

We were at a father's & son's campout, and I was so excited to spend time with my boys. We played Frisbee on the grass and cooked our famous tin foil dinners and were the envy of every camper who could smell the magical meal cooking slowly in the glowing embers. Mitch loved my special recipe.

Later that evening, we would find ourselves huddled in our family tent, listening to a torrential downpour, exhilarated by the constant clash of thunder that boomed right above our heads. Mitch snuggled into me with his sleeping bag as I wrapped my arm around him and held him tight. Little Wyatt sat on my other side, lovingly held by my other arm. Ethan bravely sat with a smile and listened to the rain pound the walls of our tent, ready to pack up on a moment's notice were we to flood.

We made it through the night dry and un-drenched. I am grateful for those moments with my family. If I have a regret in life, it is that I didn't have enough of them. I did my best, but I wish I would have done more.

I often think back on this moment when Mitch asked for help to do something other children could have done with ease. His muscles were weak, and his balance always precarious. The slightest bump from someone could send him crashing to the ground. Often, Mitchie's plea was, "Help me not fall." Every time he said that I was reminded of everything I ever for granted.

Those words "help me not fall" will echo in my mind forever. As his father, I didn't want Mitch to fall and hurt himself; yet at the same time, I didn't want to rob my son the opportunity to do things on his own. Therein lies the delicate parental balance … to help enough to enable growth but not enough to rob it.

When I look back on my life then and now, it doesn't take much to recognize my spiritual Father is doing the same thing with me. His hand is often out of view, and if I'm not mindful, I go about my busy life, unaware of His helping hand.

Yet, every time I kneel and ask my Father to "help me not fall," I get a distinct impression that He is not only there … but that He has always been there – helping me just enough to enable growth, but never enough to rob it.

At least on some level, being a Father myself, I think I understand now; and I wouldn't have it any other way.

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.