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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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It was summer and the color of the evening sun had poured into the room like a glass of warm orange juice. Grandpa hiked his pant legs a little as he sat down to tell my small children some tall tales. My little ones sat around him (Mitch on the right), captivated and smiling as their grandfather lovingly wove a story of fiction, magic, and a little bit of nonsense.

Mitch tugged softly at my arm as he pointed to the glowing lint floating in the air as it crossed paths with the window. He said in a whisper, “Dad, it looks like space.” I put my arm around him as he began to lay his head into my chest. Time slowed to a near halt as we had one of those perfect moments you wish could last forever. There were no digital screens to look at, no earbuds drowning out the world, no text messages, RSS feeds and other suffocating distractions … nothing but each other, love and the lost art of storytelling.

I remember admiring my father-in-law [a man who is as kind-hearted as he is good] connect with my children in his own, unique way. I was grateful for this soft moment. As my children were swept away in story, my mind drifted to other things. I couldn't help but think of my son, a little boy who had done the world no harm yet was a victim to a deadly disease from which there was no escape. Although he appeared healthy, I knew that he was dying faster than the rest of us. And that broke my heart.

When I leaned down to kiss Mitchell’s forehead, he put his hand on the side of my face as if to keep me there and whispered, “I love you, dad.” My eyes welled as I whispered back, “I love you more.”

I then lifted my head and looked at a wise grandfather investing his time and loving attention with my children. I began to think about the passage of time and the natural order of life. It occurred to me that before we know it, age will catch up to this wonderful man and he will soon pass away. Whatever material possessions he may have accumulated will matter not one bit. Neither will popularity or prestige. The only thing he will take with him is what he has become. And the echo of his influence and choices will be the only lasting inheritance he will pass on to the generations that follow.

As I sat in this room surrounded by a family that I love deeply, I began to contemplate the echoes we make, the ripples our choices have on ourselves and others. They can build or destroy. They can be loud as thunder or soft as whispers. They can last generations or be silenced in less than one.

Author Peggy O’Mara said, “The way we talk to our children becomes their inner voice.” I found this to be true, at least for me. I hope that any inpatient or unkind word I may have ever said to my son was drowned out by how much and how often I tried to love him. And I hope that when my son was passing that he found comfort in his inner voice – that he looked forward with faith, not fear. That he knew he was loved by those of us here ... and the many that are over there.

As I peer into the abyss of death, unable to see with mortal eyes what exactly lies within, I can hear the echo of my son; his goodness, his love, his obedience, and faith. I hope that I carry his echo forward.

Losing my son (or anyone) is a painful reminder that suns set, seasons change, leaves fall, and so do our bodies. And if that's the case, I do well to remember that I only have a few minutes on this planet and I had better make the most of it. Of all the things we give and take, perhaps nothing is so important as the echoes we make.

I’ve experienced a lot of hard things in life – but nothing so hard as being a parent.  

On this night I took my kids to a restaurant; Natalie was at another function, so I was blessed with some one-on-one time with my kids.  At one point I said something that hurt my son’s feelings.  I don’t remember exactly what happened – I only remember he was sad.  When I realized I hurt his feelings my heart broke and I immediately fell to my knees, put my forehead against his and said, “Oh, Mitchie, I’m so sorry.  I didn’t mean to hurt your feelings.  Sometimes Daddy’s make mistakes – and they don’t mean to.  I love you, son.  How I love you…”

“We spend our lives trying to grow up and out of things - and while growth is necessary, if we’re not mindful, sometimes we leave the best parts of us behind. ”

— Christopher M. Jones | Mitchell's Journey

Perhaps nothing quite shows the nobility of children as their readiness to forgive and forget.  The irony of adulthood is that some hold grudges and try to inflict hurt on others.  But children … they are endlessly good.  No wonder it is said of them, “of such is the kingdom of heaven.”  Sadly, it is adults who bring hell on earth.  If only we could love and forgive as children do.  If only we could see the best in each other and forgive with loving hearts - oh, how the world might change.

So there I knelt at my son’s feet as; a painful fatherly confession was made, and a tender plea for his love and forgiveness was shared.  Mitch put his arms around my neck, and I hugged him tightly.  “I love you, little boy.  With all of my heart.”  Mitch whispered, “I love you too, Dad.”

Mitch was smiling again – and all was right with the world.  Later that night, Mitch and my other kids would snuggle in my arms on the couch as I read stories before bedtime – a tradition Natalie has upheld since our kids were infants.  Heaven seldom felt as close as it did that night.

I know I’m not the first parent to upset their child … and I certainly won’t be the last.  What I do know, is every time I stumbled I immediately tried to make it right.

I suppose the point of this post isn’t that I made mistakes and tried to recover; instead, I can’t help but think of the utter goodness of children and how much I have yet to learn from them.  I saw in my son this night a most pure and loving heart – something I will carry with me and forever try to be.

We spend our lives trying to grow up and out of things - and while growth is necessary, if we’re not mindful, sometimes we leave the best parts of us behind. 

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Originally posted in 2015

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I’ve experienced a lot of hard things in life – but nothing so hard as being a parent. 

On this night I took my kids to a restaurant; Natalie was at another function so I was blessed with some one-on-one time with my kids. At one point I said something that hurt my son’s feelings. I don’t remember exactly what happened – I only remember he was sad. When I realized I hurt his feelings my heart broke and I immediately fell to my knees, put my forehead against his and said, “Oh, Mitchie, I’m so sorry. I didn’t mean to hurt your feelings. Sometimes Daddy’s make mistakes – and they don’t mean to. I love you, son. How I love you…” 

Perhaps nothing quite shows the nobility of children as their readiness to forgive and forget. The irony of adulthood is that some hold grudges and try to inflict hurt on others. But children … they are endlessly good. No wonder it is said of them, “of such is the kingdom of heaven.” Sadly, it is adults who bring hell on earth. If only we could love and forgive like children do. If only we could see the best in each other and forgive with loving hearts - oh, how the world might change.

“We spend our lives trying to grow up and out of things - and while growth is necessary, if we’re not mindful, sometimes we leave the best parts of us behind.”

— Christopher M. Jones | Mitchell's Journey

So there I knelt at my son’s feet; a painful fatherly confession was made and a tender plea for his love and forgiveness was shared. Mitch put his arms around my neck and I hugged him tightly. “I love you, little boy. With all of my heart.” Mitch whispered, “I love you too, Dad.” 

Mitch was smiling again – and all was right with the world. Later that night, Mitch and my other kids would snuggle in my arms on the couch as I read stories before bedtime – a tradition Natalie has upheld since our kids were infants. Heaven seldom felt as close as it did that night.

I know I’m not the first parent to upset their child … and I certainly won’t be the last. What I do know, is every time I stumbled I immediately tried to make it right. 

I suppose the point of this post isn’t that I made mistakes and tried to recover; instead, I can’t help but think of the utter goodness of children and how much I have yet to learn from them. I saw in my son this night a most pure and loving heart – something I will carry with me and forever try to be.

We spend our lives trying to grow up and out of things - and while growth is necessary, if we’re not mindful, sometimes we leave the best parts of us behind.