I’ve never been particularly fond of Valentine’s Day. To me, it has always seemed like a commercialized excuse to sell chocolates, flowers, and plush toys. So, when love took on a stark and profound meaning on February 14, 2019, I couldn’t help but find the situation ironic.
That fateful day, my husband was unexpectedly transported by helicopter to a specialized medical facility three hours away from our home and our four young children. It was the day he received an alarming diagnosis: a rare autoimmune condition known as Guillain-Barré Syndrome.
None of us could have anticipated this sudden health crisis. We were a young, healthy family, engrossed in raising our three boys and caring for our eight-month-old daughter. Our lives were a whirlwind of school drop-offs, meals, extracurricular activities, and bedtime stories. I struggled with mom-guilt, trying to find balance in the chaos. Some days, my best option was simply to close my office door and tend to my responsibilities.
Before my husband’s diagnosis, I had never heard of Guillain-Barré Syndrome. I quickly learned that it occurs when the immune system mistakenly attacks the body’s own nerves, leading to progressive paralysis and significant pain. The most alarming aspect of this illness is the potential for paralysis to affect the chest and diaphragm, which can severely compromise breathing.
After five agonizing days in the hospital, my husband was in the ICU, paralyzed and reliant on a ventilator. He was unable to speak and endured excruciating pain. The doctors informed me that his case was exceptionally severe, with paralysis that could last for weeks, months, or even longer. We felt as though we were trapped in a nightmare.
Our children were safe at home with their grandparents, allowing me to focus entirely on caregiving. My husband was unable to communicate, so I became his voice. He could not move, so I did everything I could to keep him comfortable. With his autonomic system failing to regulate properly, I packed him with ice when he overheated and covered him with blankets when he was cold. When he lost the ability to blink, leaving his eyes wide open, I gently taped his eyelids shut.
Six weeks into his hospitalization, my husband was still fighting for his life, with no signs of recovery. I made the heart-wrenching decision to transfer him to a rehabilitation center seven hours away, a facility renowned for its care. It was time for me to return to our children and embrace my new role as a single mother amid this crisis. They needed me, and I had to gather my strength to be everything they required.
During family counseling, my eight-year-old son expressed his hurt: “You should have called us more to tell us what was going on.” His words struck me deeply. My little boy had matured beyond his years, grappling with feelings of abandonment. “You’re right, Jason. I should have included you more,” I replied, my voice trembling. How could I explain that it was too painful to assure him everything would be alright?
My husband remained on a ventilator for fifteen weeks before he transitioned from the Long-Term Acute Care hospital to intensive physical and occupational therapy. His hospitalization stretched on for nine months as he fought to regain control over his body—learning to breathe, use the bathroom, blink, swallow, and move again. We made the long drive to visit him every weekend.
It was an incredible struggle, but nearly a year later, he returned home able to walk—a true miracle. This experience transformed us all. I witnessed my children cope and grow, displaying profound wisdom as we navigated this challenging journey. They matured not just physically but emotionally as well.
I experienced growth too. When my husband was first rushed to the ICU, I cried out, “I don’t know who I am without him.” Through necessity, I discovered a strength I didn’t know I possessed. I became our family’s advocate, ensuring my husband received the care he needed while also providing emotional support for our children.
I documented my thoughts and experiences in a CaringBridge journal—a platform designed to share health journeys. Journaling became a private outlet for my emotions, while sharing our story publicly allowed me to maintain a sense of control over the narrative. I aimed to frame our situation with hope and resilience. Initially, I wrote to keep friends and family updated on my husband’s progress, but I soon realized the deeper purpose of my writing: to explore our wholeness.
After my husband’s miraculous recovery, I continued to write, using it as a way to process the whirlwind of trauma and emotion. I wanted to capture our experiences for our children to reflect upon in the future. My writing evolved into a memoir entitled The Other Side of Us: A Journey of Trauma, Truth, and Transformation, which chronicles our transition from before the illness to after. This caregiver’s narrative is filled with vulnerability, honesty, and the unexpected truths uncovered in hardship.
Though it was not a happy chapter in our lives, it taught me that profound growth and perspective often emerge from uncomfortable experiences, highlighting the intricate connections between joy and struggle.
If you’re interested in further exploration of similar topics, check out this related blog post. For those considering home insemination, Cryobaby is an excellent authority on the subject, and for broader insights on fertility treatments, WebMD offers valuable resources.
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- Guillain-Barré Syndrome symptoms
- Coping with a partner’s illness
- Caregiving support
- Emotional health during crises
In summary, the unexpected journey through my husband’s illness tested our family’s strength and resilience. It transformed us, leading to a deeper understanding of love, support, and the power of vulnerability.
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