“I met husband in November of 2008. He was out at a bar with his buddies having a little hoorah before admitting himself into the hospital for a typical 2-week tune-up. He had Cystic Fibrosis. I didn’t find that out right away. I kind of went head first, like I do with anything in my life. We were talking a little more than two weeks before he told me about his genetic disease. To be honest, I had already suspected it, but to hear it from his mouth made it real.
I had researched prior to the discussion, knew what I was up against, and did not for even a single second, want to turn around and run. I just accepted that this would be our life. I can’t really even describe it. His parents asked him if he had told me… my parents questioned my motives, my friends were hesitant, but never me. I just didn’t care. I saw something in him and I wanted to be a part of it. I signed up for 5k’s to honor lung diseases because besides the daily breathing treatments and following him around to make sure his meds were taken when they needed to be, it was the only way I knew how to support him.
By early 2011, his lung function was failing enough that he was considered for a double lung transplant. In July, he was placed on the list and four months and four days later, we received the call. His transplant went textbook and his recovery was even more fascinating. His breathing was soon at 100% again.
We got engaged in July that next year, traveled across the country and we enjoyed the little things, like making him take the trash out and carry all the groceries in. We enjoyed a two-year engagement and just a few days before our June 2014 wedding, he started to experience shortness of breath. On our wedding day, by the end of the night, he was drained. The morning after, he slept in late because he was so exhausted.
We moved our sunny beach honeymoon to Chicago because we feared we would be too far from home should anything happen. By September, they were discussing a second double lung transplant and by October, we had moved back to my parents, so we could be closer to the hospital to receive some treatments that were supposed to prolong the lung rejection he was experiencing.
On December 26th, 2014 at 5:30 a.m. while visiting his family for Christmas, I was woken up to his father yelling for me to come down stairs. Jesse had slept on the couch because he couldn’t go upstairs at that point. He had gone to go to the bathroom and was so gassed that he couldn’t catch his breath. He had gotten his dad’s attention yelling in between gasps. His heart was racing, he was shaking, he was sweating profusely but he was freezing cold. He was leaning up against the sink and I could see the fear in his eyes looking back at me from the mirror the second I approached him. We had this code phrase I’d use whenever this sort of thing happened. I’d ask him, ‘Do you think you can get out of it?’ He’d always be able to tell me, ‘Yes’ and I trusted him, and we hadn’t had any issues up until this point. I asked him, and his response was, ‘No.’
I fought back every tear that was trying to escape my terrified eyes. I had to stay strong for him. He didn’t want an ambulance, and eventually we were able to get him to a computer chair to wheel him back into the living room. I called the transplant team, and within a few hours we were at the hospital. We were escorted immediately to a room in the back of the ICU floor, he was given an IV of morphine just as fast. I remember after getting him a cold rag for his forehead, his family leaving me in the room and his step mom and me exchanging glances. I remember thinking in that moment… Here we are. This is going to be a journey. I fell asleep on a cot right next to his bed and tried to get a little bit of sleep.
We were in the hospital for 20 some days. My job was absolutely amazing through all of this. I was already working from home, so I was able to log in every day from my laptop and work by his side. We found out he had a fungal infection and pneumonia. The prognosis was not good, but I held out hope. The news was never sugar coated, but man, did I hold out hope. We toggled between ICU and respiratory unit, before ending on ICU. I specifically remember the moment he wasn’t going to make it. The night nurse had checked his CO2 level, and when I asked her what the number was, I saw her face in the faint darkness in the room and when the numbers left her mouth, I knew it was over. I remember my shriek. I remember her hand over my back. She leaned over me and she knew that I knew. The next morning, I made some phone calls and two days later, on January 21st at almost noon surrounded by his parents, siblings, nephew, and family, his body was at peace.
My little brother was my saving grace. He had flown in from Alaska to be with me during and afterwards. He reminded me to shower, literally held me up when I couldn’t myself. He drove me where I needed to go, and didn’t leave my side for almost two months. He was, by far, the glue that held me together. He was my rock. I struggled. I feared what life was after Jesse. I was scared of the unknown.
I didn’t know who I was or how to take care of myself. I saw a grief counselor and by the end of 2015, I felt a little more like myself.
Fast forward to 2016. I ended up back in my hometown and had quickly fallen for an old high school flame. We were together one night in early December when my phone rang. It was my little brother’s girlfriend notifying me that the Piper Cherokee he was piloting had not made it to Anchorage. They were beginning a search, but to not worry too much. There could be a lot of possibilities on what happened. Hours passed. Phone calls with little updates came. I went to be with my parents and my mom and I had lay awake all night long waiting, and waiting, and waiting. The search continued in the morning and throughout the day and at 7 p.m. the next night, the phone call came. Some of his belongings, as well as belongings from the family that was with him, had been found in the lake located near take off. I swear to God I can feel my heart crack even typing those words. Our lives were shattered. I fell into my flame’s arms and melted. Life was never going to be the same.
My flame became my rock. I clung to that rock as strong as I could. The night before Kyle’s celebration of life, I took a pregnancy test. It was positive. That was the ONLY thing that kept me together that next day. It felt like a complete surprise, until we went for our first ultrasound. She took measurement after measurement, and when everything was set in stone, the screen flashed, and the due date appeared. July 27th. My heart literally skipped a beat. Jesse’s birthday. He knew my little brother was joining him in Heaven and he sent little miss Piper Kyle to get me through. She’s the love of my life. She is my whole heart and my entire life revolves around putting a smile on her face. My daughter is the best thing that has ever happened to me.
Grief changes you, friends. It controls you, it scares you, and it brings you peace. It’s a really, really messed up process. You feel like you’re in the middle of a hurricane and you’re being whipped uncontrollably in every which direction. Your thoughts race, anxiety literally consumes you, and sometimes, no matter how bad you want it, you physically cannot climb out of bed. No one prepares you for this. The world is too big and not big enough all at the same time. You have to grieve the way it makes sense to you… even when no one else will understand.
For me, my biggest struggle is letting go. Sometimes what you cling to isn’t able to hold you up anymore and you have to support yourself. Piper has given me purpose. She’s given me a reason to strive to be the best I can be. Her sweet little face reminds me that life is worth living. Living open, feeling deep, and remaining vulnerable.”
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