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Valentine’s Day has never been my favorite. To me, it’s just a commercialized event that pushes chocolates, flowers, and stuffed toys into the limelight. Yet, on Valentine’s Day in 2019, love took on a profound new meaning, making the irony hard to overlook.
On February 14, 2019, my husband was suddenly whisked away from our lives and urgently transported to a specialized hospital three hours from home, leaving behind our four young children. It was on that day that he received a shocking diagnosis of Guillain-Barré Syndrome, a rare autoimmune disorder.
We never anticipated such a drastic health crisis. We were a young, healthy family focused on parenting our three boys and our baby girl, who was just eight months old. Our lives revolved around school runs, feedings, extracurriculars, and bedtime stories. The pressure of being a mom weighed heavily on me as I struggled to find balance. More often than not, I would close my office door and turn on my breast pump, just to catch a breather.
Guillain-Barré Syndrome was foreign to me until that fateful diagnosis. I learned that it occurs when the immune system mistakenly attacks the nerves, leading to progressive paralysis and severe pain. The condition’s most alarming aspect is its potential to affect the chest and diaphragm muscles, which can threaten one’s ability to breathe.
After five agonizing days in the hospital, my husband found himself in the ICU, a quadriplegic reliant on a ventilator. He was unable to communicate and suffered excruciating pain. The doctor informed us that his paralysis could persist for weeks, months, or even longer. We were living through a nightmare.
Our children were safe at home with their grandparents, so I devoted myself to caregiving. My husband could not speak due to the ventilator, and I became his voice. He couldn’t move, so I did everything possible to make him comfortable. His autonomic system was failing, so I would pack him with ice when he was hot and cover 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.
Weeks passed, and my husband remained in a precarious state, hovering near death with no signs of recovery. I ultimately made the difficult choice to transfer him to a rehabilitation facility seven hours from home, a regional center known for excellence. It was time for me to return to our children and embrace my new role as a single mother in the midst of upheaval. They needed me, and I had to find a way to be strong for all of us.
One day during family counseling, my eight-year-old son expressed his hurt: “You should have called us more to tell us what was going on.” My heart sank. He had matured beyond his years. “You’re right, Jake. I should have respected your feelings more,” I stammered, struggling to find the words to explain how painful it was to not know if everything would be okay.
My husband remained on a ventilator for fifteen weeks before finally leaving the Long Term Acute Care hospital for intensive therapy. His hospitalization lasted nine months as he worked diligently to regain control over basic functions like breathing, eating, and moving. We took long drives every weekend to see him.
The journey was grueling, yet nearly a year later, he returned home—able to walk. It felt miraculous.
This experience transformed us all. I witnessed my children grappling with their emotions, showing unexpected wisdom as they navigated this crisis. I saw them grow not just in height but in emotional depth.
I transformed as well. When my husband was first taken to the ICU, I sobbed, “I don’t know who I am without him.” Through sheer necessity, I discovered my own strength. I had to become a leader for my family. I became our voice, advocating for my husband’s care while holding space for our children to process their feelings. I also had to think about the long-term implications of this illness on our future.
I documented this journey in my CaringBridge journal, a platform designed to share health experiences. Writing allowed me to maintain some privacy while being vulnerable. It helped me shape our narrative in a way that highlighted power, hope, and light. Initially, I wrote to update our loved ones about my husband’s progress, but I soon realized I was also exploring our wholeness.
Following my husband’s remarkable recovery, I continued to write as a means of catharsis, sorting through the emotional turmoil of our trauma. I wanted to capture our story for our children to reflect on in the future. My writing evolved into a memoir titled The Other Side of Us: A Memoir of Trauma, Truth, and Transformation. It reveals our journey from the Before to the After, encapsulating the vulnerability and honesty of caregiving amidst hardship.
While it wasn’t a joyful chapter, it reinforced my belief that growth and perspective often arise from discomfort—an integral part of joy.
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