The story really begins in July of 2016.
Days prior we had a Fourth of July celebration with our friends. Food, firecrackers, fierce Texas heat. We swam, and drank, and roasted s’mores on the fire pit. The kids had popsicles. The men had cigars and tended to the bar-b-que. I hid my six-week postpartum body behind a mumu, making Shawn the designated pool parent. It was your typical holiday weekend, your typical holiday day. No one saw the storm coming, nor should we have.
Then the Saturday morning tsunami hit. The day our world stopped and decided to rotate in a totally different direction. I was still in that newborn, post-delivery haze: night feedings, peri-pads, staples sore in my stomach. It had been a rough go since Eli’s birth. An allergic reaction to the cleansing agent used for my c-section caused my entire body to break out in hives. I was on multiple medications and steroids to calm my symptoms, already feeling anxious (and now itchy) in my new role as mother of two. It was the best of times—it was about to be the worst of times.
My husband’s an early bird, but that morning he slept in until an impressive six AM. That’s when I heard the thud. The sound of a two-hundred-plus pound body hitting the nightstand next to our bed, which shattered his spine. I was so disoriented from being awoken abruptly I wasn’t really there, but it didn’t take me long to realize neither was Shawn. He was conscious, but not sensical—gripping the mattress as he tried to hoist his body back into the comfort of our bed. I made an effort to help him and eventually we succeeded.
From there, things are a bit blurred. He wanted ice for his back; I wanted to get him to a hospital. Immediately. This isn’t my area of expertise, but as a nurse I knew enough to be concerned. A healthy, thirty-one-year old, athletic man doesn’t just drop.
My girlfriend came over and watched the kids as I convinced Shawn to go to a free-standing ER. She helped me load him into the car, pain streaking down his face as he grimaced with every step, off-loading his weight onto our shoulders.
I left with nothing but my purse and wouldn’t return for weeks.
I dropped Shawn at the entrance to the facility and parked the car. They had already wheeled him in and hooked him up before I got inside. I walked in on a conversation where Shawn was casually telling the doctor, “I fell and hurt my back—” a version of the story he believed to be true. I interjected with the actual details of the day: he didn’t fall, he fainted. Big difference.
The doctor was lovely and one of the sole reasons I believe my husband is still alive today. He pushed for tests that some would’ve deemed unnecessary, and as those results came back skewed, he organized a transfer to a larger hospital. When they gave him the brush off—believing there’s no way this could be happening to a man like my husband—he pushed for him to be admitted anyhow. This doctor, this stranger, not only spoke up for us, but continued to follow up in the weeks and months to come—sitting on the phone with me for hours on end, fielding my many questions and concerns. You may be able to put a price tag on care, but you can never put one on caring.
We didn’t stay at the hospital he referred us to for long. It was a major medical facility, but they weren’t equipped for what they saw, or rather the severity of what they saw, so off we went to our final pit-stop where we would soon learn that (among other things) Shawn’s heart was three times as thick as it should be. It was an over-worked, tired, prone to stopping heart—and that is exactly what happened that Saturday. It said it was done. And sure enough it would’ve been if Shawn didn’t hit that fateful piece of furniture. The jolt from his spine separating saved his life. A few inches to the right and I’d be a widow right now.
The condition has a fancy name, hypertrophic cardiomyopathy, and although already rare, we discovered Shawn had an even rarer version of it—something you only see in textbooks. Doctors flocked in from all over Dallas to lay eyes on the man with the never-before-seen heart. They couldn’t believe it and didn’t want to miss a chance to study him in real life.
None of us believed it.
Shawn was diagnosed through too many details to recount. Let’s just say: his body was opened, and explored, and put back together again. Injected, and implanted with an internal cardiac device. There were physicians, and nurses, and physical therapists. An occupational therapist was assigned for his broken (yes, broken) back, and taught him things like how to walk again and pick up his socks with a metal instrument my two-year-old coined, “The Picker.” We had to order specialty toilets, bedside commodes, bathing equipment. I fed him, and cleaned him, and tried to learn my way around heart disease. I pocketed too many physician’s cards, forgetting all their names and their complicated titles. I was confined to tiny hospital couches for weeks, dosing myself with Benadryl at night to try and sleep through the nurse rotations and vital sign checks. I ate if someone brought me something, and if they didn’t, I didn’t. I wouldn’t leave because I thought I’d miss something pertinent, and I needed all the information I could gather to try and save my husband.
I remember his co-workers coming to visit, trying to crack jokes, and my friend meeting me in the lobby, suggesting I sit in the front seat of her SUV for a change of scenery. So I did, and I bawled. I missed my babies and my old life—even though I knew that life was gone now. One nurse picked up on my panic—the circling idea that if my husband never left this hospital he may never really know his son—so one afternoon she let me sneak Eli in through the back door of the ICU. Shawn was too weak to hold him, so we just placed the baby on his chest amongst all the wires and cords.
But eventually Shawn made strides, he strengthened, and we were able to return home. The plan was that we were going to ride his current heart out as long as we could, because the transplant he would eventually require to continue living would only last 15-20 years. And we were thirty-one. Not good enough.
So the hope was that the medications and internal device they placed in his chest would shock him back into life if (and when) his heart stopped again—which it would indeed do months later when he flat-lined for the second time.
But before we get into all of that—the second heart stop, the physical ailment I developed from all the anxiety and caretaking, the mental break—the doctors discharged us with one more tidbit of information we would need to digest. A fact that would bring us to tears, and primal, animalistic screams, and bargaining with God, and fear beyond anything I had ever experienced before—a fear I wouldn’t wish on my worst enemy:
This condition was genetic.
My children each had a 50% chance of having it.
They either had my gene—or Shawn’s.
And it would be over one year of living with this life-altering unknown before we would finally find out an answer to that.