“I was 19 years old when I received the news that changed the course of my entire life. ‘Your test results are back. You have gastroparesis. It’s a chronic illness…there isn’t a cure.’
Just a month earlier I had been working full time and going to the gym every evening. I was young and in love, happy and healthy as could be, when I got hit with what I assumed was the stomach flu. A week passed, then a month, and I was still sick. I knew something was wrong, but I wasn’t expecting it to be this.
Gastroparesis: literally translated as ‘stomach paralysis’. The primary symptoms are chronic vomiting, nausea, abdominal pain, and malnutrition.
I sobbed as I called my mom and boyfriend to tell them the news.
Just a few years earlier, I had watched my mom battle and beat breast cancer with so much grace and courage, so I was determined to follow in her footsteps and fight this with everything I had.
I learned there was only one doctor in town who treated gastroparesis, so I scheduled an appointment and vowed to try and go about my life as usual in the meantime.
But as much as I didn’t want to accept it, I was getting sicker. I could barely make it through the work day. The ER became my second home, as the daily vomiting and constant nausea caused severe dehydration and required frequent IV fluids. When I finally got in to see the new doctor, reality hit hard.
He recommended three things: surgery to implant a gastric stimulator, which would hopefully lessen the paralysis and reduce the amount of vomiting and nausea, a PICC line, so I could administer IV fluids and meds at home, and finally, quitting my job so I could focus on getting my health under control. I was completely devastated. I didn’t want to do any of it.
With the encouragement of my mom and my boyfriend, I swallowed my pride and scheduled the appointment to have the PICC line placed and set a date for surgery.
Over the next couple of months, I adjusted to my new normal. I had a great support system and the PICC line improved my quality of life significantly.
And then, with absolutely no warning, I came home one night to the apartment my boyfriend and I shared to find that everything that belonged to him was missing. He had terminated our lease and emptied our joint bank account. All of my calls and texts trying to make sense of what was happening went unanswered. He was just gone.
To this day, I still don’t have an explanation. I never saw him again.
I had less than a month to find a new place to live, no savings, and I was having surgery in a week. I didn’t think I could go on without him.
And yet I did.
The next month was a blur. My mom was my absolute rock during that time. She put her own life on hold to be there for me. She was there through the horrible heartache, the painful surgery and hospital stay, the process of finding a new place to live with hardly any notice, and everything in between.
The surgery was incredibly difficult. What was supposed to be a one-night stay turned into almost a week. As I recovered, my mom helped me move into a new apartment. With her support, along with that of a few friends, I began picking up the pieces of my life and putting myself back together.
Weeks passed, then months. In the midst of all the pain and ruin, I had found a strength within myself that I never knew was possible. Slowly but surely, mentally, I was healing.
Physically, I was not. I had become underweight and severely malnourished. After exhausting all other options, I had an NJ (nasal jejunal) feeding tube placed.
And then I met Jonathan. Falling in love was the last thing on my mind, and yet, when I least expected it, it happened.
The night we met, I spent hours telling him my entire life story as he sat and listened. Any normal person would have probably turned and run right then and there. But he didn’t. None of my issues bothered him. None of my past made him uncomfortable. Even with the central line in my arm and the tube taped to my face, he looked at me like I was the most beautiful woman in the world.
When I asked him why none of it bother him, he said, ‘I don’t even see those things. I just see you.’
We spent every day together after that. The circumstances were far from perfect, but we loved each other, for better or for worse; even when I became sicker than ever and was back to spending half of my life in the hospital. The gastric stimulator had begun to malfunction and I needed surgery to remove it.
My PICC line stopped working and had to be removed. I had surgery to implant a mediport (similar to the PICC but more invasive) and the tube and my nose was replaced with a G/J (gastric/jejunal) tube surgically placed in my abdomen.
Jonathan and I had spent far more time together in hospitals than on dates. I continued to lose weight and my labs significantly worsened. My mom and I researched any and all treatment options we hadn’t already tried, and as a last ditch effort, we traveled across the country to see a team of some of the top gastroparesis specialists in the US. As kind and caring as they were, most of what they said was more of the same. I had tried all of the medications, the procedures, the natural remedies. There wasn’t anything else they could do.
I asked point blank, ‘am I going to die from this?’
He somberly answered, ‘I don’t know.’
I returned home completely defeated. I was at my lowest weight ever, on more medications than I could count, and extremely depressed. There were complications with my new feeding tube and I needed three more surgeries. I felt like a burden to my mom and Jonathan. I knew they loved me, but after all that had happened before, I was so afraid I’d lose them too. I’d almost lost hope altogether.
But just a few weeks later, I woke up one morning feeling ‘different’. I really can’t explain it, because it didn’t make any sense. But something in me, some part that defies logic, knew.
Hours later, I sat shaking with a pregnancy test in my hands. I hadn’t had a period in over a year. My body was barely functioning. But against all odds, two pink lines appeared.
I went to the hospital and it was confirmed via blood test. I was pregnant.
The doctor was extremely harsh. ‘Your body is in no position to sustain a pregnancy. If you don’t miscarry on your own, you need to terminate. You can’t survive this and neither can a fetus.’ Obviously I knew the odds were against us, but I didn’t care.
I made an appointment with a new doctor, a wonderful woman whom I will always be thankful for. She supported my decision to continue the pregnancy and promised to do her best to give both of us a fighting chance.
‘Let’s take a look at this little fighter,’ she said.
I watched the screen as she moved the ultrasound wand. I had always wanted to be a mother, but could it really be possible? After all of these years fighting so hard and often unsuccessfully for my own health, could my body truly provide for another life?
That’s when I heard it. The heartbeat.
‘That’s your baby,’ she said. That’s your baby.
Tears streamed down my face as she printed the grainy black and white photo and placed it in my hands, handing me real, tangible hope.
8 months, two subchorionic hemorrhages, a diagnosis of polyhydramnios, 20 + weekly ultrasounds and NST monitoring, multiple preterm labor scares, and a complicated 15-hour labor later, I was being wheeled to the operating room, getting ready to meet my son. Against all odds, my body had rallied. Gastroparesis and all, I had carried this baby to full term.
My mom kissed my forehead as they pushed me down the hallway. ‘I’m so proud of you,’ she said.
As I laid on the operating table with Jonathan holding my hand, I heard my doctor say, ‘he’s almost here.’ She had kept her promise.
And then I heard him. His sweet newborn cry. It was the most beautiful sound I could have ever imagined; the sound of my child. I looked at Jonathan and we both cried tears from feelings words cannot describe. I told him over and over again, ‘I love you. I love you so much.’ I had given him life, but he had saved mine.
Today, Bentley is a happy and thriving 3-year-old. He is truly a miracle in every sense of the word. I am still fighting my battle with gastroparesis, as I always will, but my life is so much more than I could have ever imagined it would be. I am now a mother of two children, and not one day goes by in which that doesn’t amaze me. This month, Jonathan and I will celebrate our 5th anniversary, on the same day our daughter turns one.
Every single day, I am so thankful I chose to fight when I felt like giving up.”
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This story was submitted to Love What Matters by Courtney Spear of San Antonio, Texas. You can follow her journey here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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