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Category: Life Culture

A Culture of Life When Life is at its End

March 29, 2023

(Lead photo credit: Erica Mace)

For the last several months, I have followed the story of a sweet friend of mine who has had to face the impossible. Her young son Hyrum was diagnosed with a terminal illness, and Erica had to endure overwhelming sorrow as she watched his life slip away.

Erica did all she could for her son. She advocated for him every step of the way – involving him in a clinical trial and researching everything that could potentially improve his life. But, unfortunately, the cancer that they found was guaranteed to be terminal, and they soon had to put him on hospice care.

Photo credit: Erica Mace

Erica, a very talented writer, shared her experience with friends and family through an online blog. She simultaneously processed her grief and kept loved ones updated by sharing her words. It is impossible to read her words and not be touched by her son’s life. 

As Hyrum neared the end of his life, she shared the following:

As I watch him, I’ve been deeply struck by his tenacity. Hyrum’s been so limited for so long. His body doesn’t get full use- he can’t swim like he so loves to do or eat his favorite foods. No walking, talking, swallowing, no moving his right hand… At this point, all he can really do with his body is hurt, grunt softly, listen a little, sleep occasionally, give a small thumbs up, and just… be in it. Honestly. That’s really it. What joy is there in that??

But he CLINGS to it. He loves it. It is worth so much to him that he will take the hurt and restlessness to have it 10 days more. He literally just lays there! But he will not let it go. He actively chooses to BE for every small moment that his body lets him stay.

What a beautiful lesson we can learn from someone so young! Despite his circumstances, this sweet boy recognized what a gift life is! Even with extreme limitations put upon him, he knew that his life was precious and his body sacred. His family soaked up every minute they had with him and allowed themselves to fully appreciate him and his life.

Later in that same post, Erica shared the following powerful words:

…Even if it can’t do much, a body does a lot. It offers me relationships- the family that birthed me and the people in my space. Proximity is bonding, and a body gives me that. It ages and instructs the soul. It feels. It hears. It sees. It has the power to touch and change and shape and build and be. It offers me a NOW that’s real beyond what I believe. The mind exists untethered by a time or state or place. It drifts between sad and happy, there and here, then and now. It self-creates and self-destructs and builds the world it seeks. 

Our bodies? They are in the now. One place. One time. One world- the one we share, with all its truths, complex, beyond control. The gift of now… It offers me sensation, social bonds. It offers an oasis in which wandering minds can dwell. It offers a reality that’s bigger than my own, and if I choose to learn from it, it shapes my very soul.

How could I treat that casually?! My anchor to the world? My window to experience? My root in human love? When I think of my body, I should appreciate its follies and engage with all its gifts. It merits careful care, active respect, and intentional experience. Truthfully, I ought to be thanking God every day that I even have one at all.

So as excruciating as it is to watch my son struggle and stiffen and fade, I guess I see his wisdom. A few more days of living is a gift worth dying for. The least that I can do is let him live it, help him be. I’ll sit with him. I’ll watch him hurt. I’ll learn what he can teach.

Photo credit: Erica Mace

Sweet Hyrum passed away a few weeks ago. Those who heard his story embrace the lessons he taught. He showed us that life is worth clinging to. That even while he was dying, he was living – as his mother phrased it, “He [drew] every ounce of life from each new day.” He understood the gift that life is, seeing the sanctity of it in a humbling and inspiring way.

Sorrow and pain like Erica’s is overwhelming, but Hyrum’s life gave and continues to give others hope. His very existence taught of love, endurance, and happiness. Hopefully we can all be lifted by such unbearable circumstances. May we see our lives as the gifts they are and draw life from each new day, loving and serving those around us and holding tight to our loved ones. 

Hyrum’s obituary can be read here. To learn more about Hyrum’s story, please see Erica’s blog, which can be found here