On February 23rd, 2018, my husband’s family lost a beloved son. Erick’s death was not surprising or unexpected; he had been born with a rare combination of two genetic illnesses – Addison’s Disease and Adrenoleukodystrophy. Doctors had been preparing my husband’s family for Erick’s death for the last 20 years. The fact that Erick made it to his 39th is astonishing. The fact that Erick’s suffering is now over is a blessing.
Erick had two memorial services: one on February 28th, in Smyrna, TN, and one on March 1st in Lawrenceburg, TN. I met my husband’s childhood friends and his extended family. I met dozens of friends and colleagues of my in-laws. Laughter was shared, and tears were shed.
I heard many stories about Erick. I didn’t get the chance to know Erick other than through his diseases. I could only imagine what he was like through the memories of his family and friends.
The Erick I met could not communicate in any way – he had no vocal capabilities, nor could he blink once for yes or twice for no. There was debate about what Erick could understand, if he could even understand anything at all, once the disease fully ensnared him. I know his mother and his primary nurse believed he was still in there somewhere.
Last summer, I got to know Erick as well as I could when my husband and I stayed at his parents’ house for a week so they could take a well-deserved vacation.
During that week, I cleaned Erick’s face in the morning and emptied his urine bag. I administered medicines through his feeding tube, which connected directly to his stomach. I put a breathing device on Erick to help him clear his lungs. Every 2.5 hours I turned him, at least until my husband woke up and took over or the nurse arrived and provided far better care than I ever could.
The state of Tennessee provided Erick with 32 hours of nursing care per week. For my husband and I, that meant we could still see each other during the day and go out and about in Nashville while we were taking care of Erick that week.
My in-laws were expected to work full-time jobs and then care for Erick full-time before and after work. As Erick needed 24-hour supervision, this provision made it impossible for my in-laws to have a typical American life. They devoted nearly every hour of their lives for the last 12 years to taking care of their son. For the last 20 years, they watched him suffer and there was nothing they could do medically do about it.
When I consider Annie Dillard’s profound saying, “How we spend our days is how we spend our lives,” I think about the kind of love that my husband’s parents have for Erick to spend every day in service to their dying son.
They refused to put him in a home and they refused to give up on caring for him. They sacrificed themselves in ways I can’t even imagine. I suppose that is what you do for someone you love because what is the alternative?
I am not a caregiver. Yes, I care for people and animals and the beauty of creation that is God’s gift to all of us. But it is not my vocation.
My vocation is writing and playing with as many animals as I can. I say this because I’ve been thinking of how I can best memorialize Erick, a man I’ll only really know through the love of my husband and his family. I have no stories of my own about Erick while he was alive, yet his story means something to me.
While I was in Nashville with my husband’s family, the time came for my agent to submit one of my picture book manuscripts, Sundays with Pop-Pop, to publishing houses. The timing wasn’t ideal, but she had a fire inside her for getting the manuscript out and I am eager for my first book contract. In retrospect, I do feel regret for closeting myself in their office to perfect the draft while there was so much grieving around me. I will hopefully not make that mistake again.
But I now know how I will honor Erick and the love his family has for him. Sundays with Pop-Pop is a story of love and loss. It celebrates the special relationships we have in our lives, whether they are biological, a beloved family pet, or a concerned member of our community.
Erick is, and always will be loved. When Sundays with Pop-Pop is published – and I truly believe it is when, not if – I will dedicate the story to Erick. He deserves it.
Thank you for reading my blog. And if you are so inclined, please send thoughts and prayers of peace to my husband and his family.