The Grief of Caregivers: A Religious Perspective

In a request to those who like to write, an author asked anyone who felt they could write about grief to do so. She gave ticklers like, “What have you learned about grieving?” And, “What do you want others to know about grief?” Putting this question into the context of our families’ seven years with a child who is medically complex, I explored my own thoughts on the subject.

Grief is a wicked, yet constant companion in our lives. In retrospect, I am wondering if all marriage vows should include the line, “Amidst grief and joy, from this day on,” instead of, “In sickness and in health.” The latter connotes we either live in sickness or in health, when really, we live in a continuum of sickness and health and grief and joy and pain and fear and love, and on and on. I wonder if more marriages would succeed if two people understood from the beginning that life isn’t just happy or sad!

Picturing Grief

After seeing my kids off to school this morning, I walked downstairs, put a load of laundry in the washer, and settled on the floor to start folding my previously ignored baskets of clean laundry. Flipping on Netflix in hopes of finding some inane entertainment while sitting in bondage to a mountain of both clean and dirty clothes, I discovered a documentary called Facing Darkness. Facing Darkness is a sobering peek into the devastation of the Ebola outbreak in North Africa, just a few years ago. My heart was breaking over the news streams of thousands of deaths, and the lack of initiative in other nations to assist in the eradication of the disease.

As I watched the film, I realized that I sort of recognized one of the men in the documentary as someone from high school. After a quick post to my fellow Kenyan high school classmates on Facebook, I was assured it was the same person. Though he would not be one to remember me, thanks to my wallflower days, I did remember him.

While my friend was reliving the horrors of those years in Liberia in words, I was watching his face, his eyes, his body language to try to learn about how he was handling his grief and his memories. All together those things screamed of deep-seated wounds, fears, and a grieving process still in its infancy.

Most of us have experienced a myriad of circumstances leading to grief from early on in our lives. No one is immune. How one deals with the grief is another matter. As a culture we do not talk about our grief. We don’t ask, “So what grief are you dealing with today?” Instead, it’s, “How are you today?” And we say, “Good.” We leave the conversation there. Neither party paving the way to a more connective conversation.

I have yet to figure out how we are really meant to relate our grief to others, if at all. I take mine to the Lord, and only Him. But there’s an ugly monster that lives within me named Grief, and I see myself being wafted about by monster Grief at the least opportune times.

When Children See Our Grief

One of those times monster Grief reared up and manifested was in the middle of the night a few years ago. My son was still supposed to be wearing his night orthotic brace for scoliosis. But it’s tight, awkward, and wickedly painful on his skinny, little body.

Miraculously he had fallen asleep with it on, but woke up screaming bloody hell a few hours later, begging me to take it off. I slid off my bed and onto his pile of mattresses on the floor, a few feet from my bed, and collapsed next to him. I began shaking in sobs. Sobs so big I couldn’t get a hold of myself. I couldn’t stop the overflow of traumatic memories from countless days, weeks, and hours of watching him struggle in his hospital bed. I cried for his past, and I cried for his future. I cried from exhaustion. I cried from anger. I cried from the horrific feeling of helplessness I felt every moment since his birth.

And in the depth of my pain, my son Rhyse burst out in an emotional wail, tears streaming down his face etched with a deep compassion well beyond his five-year-old mind. He grabbed me by the head (as he still does to this day) and squeezed tight, and said through watery sobs, “Mommy, please don’t cry. Mommy, please stop crying. I don’t want you to cry.” His voice, the look on his face, and his incredibly serious tone will forever be a portrait of both love and grief painted in the front of my mind. My five-year-old didn’t want his grief to be mine.

Handling Grief

I can’t say that I am through the grieving process yet, even after seven years. And some days I feel like I am still on step one. I still want to take away Rhyse’s genetic mutation, and declare him plain old “typical.” No matter the stage of grief I may or may not be in, I am sure of one thing: we are going to grieve in this life, but not in the next. But in a supernatural way Jesus knew how to take our grief upon himself, and challenge us to remember as such. My journey with grief is not to stare at the past, but to stare at the cross, and moment by moment learn to unleash my grief from my own grasp.

If ever I needed a picture of Jesus’ love and grief felt for us it was in that moment, in those tears that ran down a little redhead’s face, holding my face in his hands. “He was wounded for our transgressions, bruised for our iniquities.” (Isaiah 53:5) Maybe, just maybe, Jesus really does understand our grief, our losses, our pain. If it weren’t for a supernatural, loving God, incapable of malice or neglect, grief would kill us. I am not overcome, because He overcame.

Heather Cole’s blog can be found at http://medicallycomplexfamilies.blogspot.com/. Heather and her husband Jon, daughters Leah and Maggey, and son Rhyse (Noonan Syndrome PTNP11) live in Allendale, Michigan. Jon works as a purchasing agent, and Heather is a stay-at-home mom. After hitting the age of forty they decided it was safe to say, “we’re done.” Less than a year later Rhyse was born! Absolute joy immediately turned into absolute trauma, agony, and a myriad of emotions. Heather instantly fell in love with her little man—emphasis on little—and yet the journey beyond mere survival lasted over two years. Now, at four years old, the diagnoses continue to stack up, and yet that little stinker butt has a zest for life and all things fun and silly and sneaky! He’s passionate about anything on wheels, especially emergency vehicles and has all his tons of toy vehicles memorized to the minutest detail. He has shown himself an overcomer, never ceasing to challenge Heather to be one too.