Posts tagged Hospice
THE TROUBLE WITH TIME
The trouble with time is we always seem to think we’ll have enough of it.
— Christopher M. Jones | Mitchell's Journey

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 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 so kind and compassionate, yet strong and direct. She was immediately soothing to Natalie and me … parents who were 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 to 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 like I have never prayed before. “Take me!” I pleaded with my Father, “Please, take me instead. I would endure any suffering if it would spare 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 truly grow.

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. It seems that only when we stand to lose everything do we find which things really matter. My family matters more to me than anything – and I have discovered how and where I spend my time matters just as much. 

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MICROSCOPIC MOMENTS

Mitch was home on hospice for a few days and was anxious to play a new video game that had just been released. We wanted him to enjoy what little time he had left, so we paved the way for him to play. The thunder of crashing sounds and music filled the air. Mitch was audibly in awe of the game’s graphics and I could hear him down the hall saying, “Oooooh, that is so cool!” 

Suddenly there was silence.

“Oh … no. Not now. Please, not now.” I cried inside.

Panicked, I ran down the hall with the speed of an Olympian to see if Mitch was okay – after all, his cardiologist said he was at risk of instant death. He was sitting strangely quiet on the couch when I said in a worried tone, “Mitch, are you okay?” 

Mitch smiled softly and whispered, looking toward his hand, “Dad, look.” I then saw baby Marlie who had rested her head softly on his hand and began to sleep. Mitch didn’t move a muscle. 

In this very moment my heart burst with love and gratitude. I loved my son with all of my heart and was grateful he was entrusted to me. I loved this puppy for what she did for my dying boy’s heart and soul. I loved my father-in-law for becoming an instrument of love and mercy – for finding this puppy for my sick child before he passed away. And most of all, I loved my Father for the many tender mercies that were in my life – however undeserving I may have been. 

Though we were hurting deeply, we were also being helped by an influence unseen – and that is no small thing. Yes, Mitchell’s Journey is a story of love for a sick child … but it is also a story of Heavenly love. Somewhere in all my heartbreak, deep in the shadows of sorrow, I have discovered that Heavenly love anew. 

I lost track of the many winter nights when I wept and pled for my son – that somehow Heaven would make things right. Eventually an insight, like a flash of light, broke through; “Be patient, my child, death is not the end, and there is something I want you to learn about you.”

Slowly time passed – and I found myself in agony over moments lost. Days turned into weeks and months turned into years. Over time I have learned to walk again and see far past my tears.

It’s microscopic moments like this, between a baby dog and a sick little Mitch, that change the way I see. Instead of focusing on grief and hardship I’ve learned to appreciate our many, many tender mercies. If we’re not watchful, we could complain about the pain and sorrow all day – blinded by grief, unaware of the blessings and heavenly helps along the way. 

I look for microscopic moments to be grateful, because they all add up. And before I know it, those little blessings fill my empty cup.

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IN TIME

I can still hear the evening crickets on this nearly magical summer eve. Like a sunburn, I can feel the warmth of summer on my skin. Mitch pointed into the dark water as Wyatt listened intently. “See, those fish? They are a family.” Wyatt replied, “Do they like gummy worms?” Mitch furrowed his brow a moment and thought … then said, “Probably. But I think they like Doritos best.”

I chuckled at my little boys. I wanted to hug them that instant but refrained because this was their moment. My heart was overflowing with a kind of fatherly gratitude I had never experienced until that moment. I dreamt of becoming a father, but I never imagined a love so deep. Part of me wanted to freeze this moment in time and live in it forever; but I knew tomorrow would bring new blessings – so I welcomed the passage of time as both a blessing and opportunity for new discoveries. 

When Mitch first learned he was going to be a big brother, he was so excited. He wanted to usher his wee brother into a big world filled with wonder. With a heart filled with love, I often found Mitch kissing baby Wyatt’s hand while he slept. In time, not many years later, I would find Wyatt kissing Mitchell’s hand as he slept, barely breathing and slipping away. A brutal irony that pains me and heals me at the same time.

Just before Mitch was admitted to the hospital, I called my neighbor who was also my Bishop at the time (a religious leader in my church). I could hardly talk through my tears and broken voice as I said, “Will you please give my son a blessing?” Within minutes this inspired, selfless man came rushing over. As we lay our hands on my son’s head, tears streamed down my face. I quietly gasped for air (a few times it was audible) and fought to keep my composure as I heard this good man share words of comfort, blessing and heavenly insight. He fought back tears, too, as he shared inspired words our Father wanted Mitch to know. A few minutes after the blessing, Mitch said in a whisper to his brother Ethan (observing our tears), “It felt like it was raining.” Such were our tears.

There were many times while Mitch was home on hospice, as he slept, that I wet his hands and neck with my tears. I prayed mightily to my Father for a way out – I begged that He would take me instead. But a way out would not come and soon I would lose my little son. In time, I would find myself in a hell I was afraid to imagine. Yet there I was, in the darkness and heavy in sorrow. I wrote of grief, “There are days … sometimes agonizing moments … the gravity of grief is so great it feels like I’m walking on Jupiter. It’s a place where your chest feels so heavy even breathing is difficult. I have come to learn that once you lose a child you leave earth’s gravity forever. You may visit earth from time-to-time, but Jupiter is where your heart is. And from what I can tell, we will live the remainder of our lives in the gravity well of grief.” (see essay, Walking on Jupiter, June 3, 2013) 

In time, after much weeping and soul-searching, I would find myself leaving the Jupiter of which I spoke. The gravity of grief no longer had the power to take my breath or steal my joy – at least not all the time. This journey from Jupiter was welcomed by my weary soul – for I wondered if the prison of such sorrow was a life sentence. Thankfully, it was not. I still cry for my boy. I wept while writing this very piece. But I feel more love, peace and gratitude now than I have ever felt sorrow – and that’s a lot. 

This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me. 

In time, I will see.

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WHEN THERE IS NONE TO TAKE

Little Mitch was less than 24 hours from being admitted to the ER. We would then learn he only had days left to live. After a rigorous battle in the cardiac intensive care unit, we took Mitch home to live out the remainder of his days where he was comfortable and surrounded by everything and everyone he loved. No time in my life has been more sacred than that time with my son. We were blessed to have him 3 short weeks … which were also the longest weeks of my life. My knees are still bruised.

I’ll never forget how little Mitch leaned into his mother’s embrace in search of comfort. As his parents, we were desperate to rescue him. He was in a great deal of pain as organs in his body reacted violently to his failing heart. It is a tender, terrible irony that a little boy who had such a loving heart would die from heart failure. Natalie held our boy in her arms, also in search of comfort. But there was none to take.

Over the next few weeks we would watch our once vibrant son wither away. I wanted to have that one last conversation with Mitch. I wanted to tell him for the last time how much I loved him and how proud of I was of him. I did tell him such things while he was home … but I wanted just one more. I wanted to tell him that when I grow up, I want to be just like him. I still do.

In 2012, the Thanksgiving prior to Mitchell’s passing we were at my in-laws at a family function. Everyone took a turn to share the one thing they were grateful for. Most parents shared their gratitude for their family and for God. Children shared their gratitude for toys, family and friends. When it came time for Mitch, he simply said, “I’m just thankful to be alive.” I recorded him saying that with my iPhone. I remember that it took a maximum effort to not burst into tears at that very moment.

Another bitter irony that a child who intrinsically valued life would have it taken from him so young.

Comfort and spiritual assurance came and went like a heavenly tide under the dim light of tender mercies. After my son passed away the sky, which was already pitch as night, drew darker still. There were times I sought after heavenly answers and peace … and I received nothing. It would take repeated efforts to reach heavenward before certain answers came. Looking back, I can see that my struggle to find answers and peace [peace, where there was none to take] … that very struggle taught me things I needed to know. I discovered things I would have never learned had answers and peace come at my beck and call, as though God were some kind of cosmic butler. He is no such thing. But He is a parent and a master teacher who understands nothing of value comes easily. Sometimes the answers we seek are discovered in the struggle itself. 

I often hear or read statements like “choose happiness” as though it were possible to blithely lay down our troubles like heavy, unnecessary luggage and simply move on. No sentiment could be more naive or insensitive to those who are trying to find their way through the wilderness of grief and trouble.

How are we to find peace where there seems none to take? It isn't choosing happiness, first.

At least for me, I have discovered that when I first seek meaning and purpose, happiness eventually follows. More than happiness, actually; I experience deep joy and a calming sense of understanding. Yet, when I seek happiness first, I forever hunger for that which cannot satisfy. 

Little Mitch taught me to first seek meaning and purpose, then peace will follow. Understanding will fill those places that seem so empty and hollow.

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