How I Found My ‘Courage to Care’
Some people are natural-born performers, leaders, artists, lawyers, doctors, or teachers. I like to say I was born to be a caregiver.
Some of my first memories are watching over my younger sister and cousins while we were growing up. I like to think that caregiving is something that runs through my veins, as deep as my blood.
When I was growing up, my family experienced its share of health challenges. We spent a lot of time in hospital waiting rooms, waiting for word about my grandmother or other loved ones.
My dad has a chronic autoimmune illness, so I was taught to take care of myself, listen to my body, and seek medical help when something feels off. He would always say that if something doesn’t feel right, it probably isn’t. I believe that the health lessons I learned from my sweet grandma and my dad have helped me in life and allowed me to become the person and caregiver I am today.
Staying strong and setting an example
My role as a caregiver began when I was 16, and my first daughter was born while I was a junior in high school. I was terrified when I found out I was pregnant, and I promised I’d do everything I could to be a good mom and love and provide for my baby. Being a single teen mom was one of the most challenging periods of my life. I was so proud of myself for graduating with my class in 2000 and holding down a full-time job.
My son was born when I was 21. I was now the provider for two little humans whose lives depended entirely on me.
I was busy trying to figure out life as a single parent when my youngest daughter, Bella, was born in 2008. I was not in a healthy relationship, and eight days after Bella was born, I became a single parent again. But even on my hardest and most stressful days, I remained positive and optimistic about our future. I was determined to be a strong example for my two daughters and son.
In 2013, I reconnected with my now husband, who through love, hard work, and commitment has become our rock, and the balance we needed in our family.
The day that changed everything
We were busy loving and living life as a family when everything changed on Aug. 27, 2017. I had taken the day off to run some errands before the kids got out of school. I woke Bella up to get her ready for school, and she told me she wasn’t feeling well. I thought that maybe she just wanted to stay home and spend the day with me, so I let her take the day off.
As we ran errands together, Bella complained that her stomach hurt. I thought maybe it was just a bug. We arrived at my first stop and waited for my appointment. While we waited, Bella became lethargic and nauseous, and then vomited. When my appointment was over, we went home so she could rest.
Over the next few days, Bella’s condition deteriorated. I was worried about what was happening. She had vomited many times, and I was concerned she was becoming dehydrated. My husband took her to a doctor, and later, I took her to a local hospital, where she was given fluids and sent home.
Then, I took Bella to an urgent care branch of the Children’s Hospital Colorado, where bloodwork determined that she had pancreatitis. Doctors decided to send Bella to the main hospital, where she could be monitored for a few days. They assured me that hospital staff would make Bella comfortable and keep an eye on her. I agreed, and she was transferred by ambulance with me by her side.
The next few weeks after that were a blur of doctors, nurses, tests, sleepless nights, stress, tears, and moments of both sadness and joy. The Mayo Clinic and the University of Colorado Hospital got involved. At one point, Bella was intubated because she would try to vomit but had the hiccups, which literally choked her.
Finally, on Sept. 6, 2017, we found out what was happening with her. Bella was diagnosed with neuromyelitis optica (NMO), a rare autoimmune disease. It was so rare that doctors instructed me to research the illness so that we would know what we were facing. I found out later that at the time Bella was diagnosed, she was the youngest patient in Colorado with the disease.
All roads lead here
Bella was in the hospital for six weeks, and in October, we finally walked out of the hospital the same way we had walked in: hand in hand. I promised Bella that I would fight this fight with her, and that she would never be alone.
A part of me feels that all of the experiences I’ve had in my life before Bella’s illness have helped me become the caregiver I am today. I want to be an example not only for my kids, but also for other patients and caregivers facing similar illnesses or other challenges in life.
I have dedicated my life to being a good person and showing kindness to everyone I encounter, even if it’s just with a smile. Because of Bella and her fight with NMO, I have found the courage to be her voice so that her only worry is being an active, healthy, vibrant, and adventurous teenager.
The courage to keep going despite adversity and challenges is inside each of us. It is my hope that this column, “Courage to Care,” will help you find the courage to fight on, too.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).