- Posted February 23, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
Growing up, I was a very independent individual. I only depended on my parents to provide me money and guidance, a car that would get me from point A to point B, and at least eight hours sleep to be able to function effectively. I had hopes and dreams like any other person. I worked hard to accomplish those goals. I graduated from Marietta College with a Bachelor of Arts in Education with a 3.9 GPA and an intense desire to change the world when I landed my first job as an educator. I was open to the responsibility of children depending on me to meet their educational needs and support their character development. I added the responsibility of becoming a mother, where my own child would depend on me to bring her into this world and to show her how to become independent on her own someday. More than anything, I wanted to be a great mother, meeting every need that would arise with grace and confidence. Little did I know what this life would have in store for me would change with one diagnosis.
I gave birth to Jillian on May 4, 2010. As I was carrying my five-week-old daughter to her changing pad, I lost my balance and fell. Thankfully, I was able to carefully drop her in the recliner on my way down. I was mortified! I had no idea why I had fallen, and was more upset about the fact that I had no control of my body as I was crumbling to the floor. I knew, at that exact moment, that there was something terribly wrong. I went through of long list of medical professionals, until I was referred to a genetic specialist at the Ohio State University. After an extensive exam, the specialists there had an idea of what they were looking for. It could only be concluded through a series of genetic tests done at Baylor College of Medicine in Houston, TX. I was diagnosed with Friedreich’s Ataxia on April 25, 2011. I remember asking, “Why? I have a baby that depends on me!” I would research my diagnosis with despair and disappointment, creating timelines of when things would happen. I remember telling myself I could at least make it long enough to explain to my daughter what was happening to me before I would be restricted to a wheelchair; I would at least get to see her married before my life expectancy of 30 years would expire. My hopes and dreams as a mother were shattered. I did not want my daughter to see me deteriorate, but I knew that I would have to face this disease head-on and never give in!
For two months, I was consumed with what this disease would mean for me. My whole world came to a halt on July 7, 2011 when my daughter was taken to Children’s Hospital for a diagnosis of cancer. She was 14 months old and was diagnosed with a Wilms’ Tumor. Every thought of FA was pushed aside, as my daughter’s life was on the line. She was depending on me now, more than ever! Daddy had to be the one to remove her from the scary situations of scans, x-rays, ultrasounds, and all of the other torture she would endure. I felt helpless and completely worthless! I wanted so badly to be the one to hold her during her chemo treatments, the one to chase her down in the lobby as she would try to run away, and the one to carry her out of the clinic after a successful treatment. On December 22, 2011 we endured the torture of another surgery to biopsy spots on her lungs. The surgeon personally called us on December 23rd to give us our Christmas miracle! Cancer had not spread into her lungs! We spent Christmas in the hospital, and I watched my daughter fight through the pain and beat this monster! I forgot about the fact that I had to have someone walk me down the hall to the cold, sterile shower that every parent on the floor had to use. I forgot about my struggle to maneuver around places by holding the walls. I took the example from my eighteen-month-old child, and energized my fight on Friedreich’s Ataxia. I adopted a new motto as well, “One Day at a Time!”
One of the most crippling symptoms I suffer from now that I live with FA is my gradual loss of mobility. I could never carry my daughter out of the house or walk without holding on to someone or something in public. I could not go anywhere on my own, only to my job. I would only have to walk a few steps to get in the building, where I would depend on the walls and bookshelves for something to balance myself with. For a year, I only ventured into one half of our school building. I did not go to the gymnasium or lunch room as there was too much open space and nothing to hold on to, unless I moved a student down the hall with a chair on wheels. When my neurologist was ready to confine me to a wheelchair, I wanted to remain as mobile as possible so that I could continue to be a teacher. A walker for people with neurological conditions that was sturdy enough to be able to mobilize myself safely without relying on walls was a Godsend for me, as I was able to now visit parts of our school that I had not seen in over a year. Mobility is greatly improved with my walker, but not without a price. When my energy supply for the day is depleted, which is also something that FA steals from me, pushing a walker around is a struggle. Each step is a battle that I must win. There are times when the walker wages war on my feet, leaving toes tangled in wheels and cuts and bruises all over. I have battle scars daily, but that is the price that I must pay to stay upright.
Just like many others with a rare disease, I am dependent on research to help find a treatment, and possibly a cure for Friedreich’s Ataxia. Even more horrifying than being told that you have a rare disease, is being told that there is no treatment or cure. There was not even a glimpse of hope! I felt like I was being told that I would lose my ability to walk, speak, and swallow. My cardiologist even said the words, “It’s not if, but when” when she spoke of the hypertrophic cardiomyopathy that FA causes. This was the most terrifying, as this is what is responsible for many deaths in FA patients. There was no specific timeline, as all FA cases are different, but I prepared for the worst. My greatest devastation was thinking that my daughter would watch her mother deteriorate right before her eyes. My ray of hope came in January of 2013. FARA, Friedreich’s Ataxia Research Alliance, was enrolling participants into a clinical trial for a possible treatment! I jumped at even a chance to experience some improvement. I began an experimental drug in May, 2013. I was hesitant to continue the study after 6 months for many reasons, but the neurological improvements spoke volumes as a reason to remain in the study. I am now dependent on research that my neurologist at Children’s Hospital of Philadelphia, Dr. David Lynch, is heading for all FA fighters. I would love to do more to fundraise for FA, but have focused on the fight of childhood cancer. The mother of my fellow fighter told me as I expressed my desire to fundraise for FA, “You are a mom, and moms put their babies first.”
My greatest dependency has come at a heavy cost. I have become dependent on my family and friends. This was one of the hardest adjustments that I have learned to make. I took pride in taking care of myself, and FA has taken that away from me. On top of everything that this life has thrown my way, my daughter was diagnosed with Autism Spectrum Disorder in July, 2013. My mother takes care of my daughter and her needs as I go to work. I could apply for disability, but as long as my body is able, I will continue to teach. I could not survive on disability pay, as we struggle to pay for our home, our transportation, medical bills, and other daily necessities. My husband was running his own business, but had to quit for a more stable and dependable income. Every time we try to get ahead, another unplanned expense comes at us. Life is about making choices based on necessity now, not on luxuries. I pray every night for a cure for FA. I ask for this not for my own benefit, but for the benefit of my daughter. She has had her mother robbed from her. I pray that I could have the energy, the motivation, and the ability to interact with her so much more. Her Autism makes everything much more difficult for her, especially communication, so she depends on example to learn. I pray to be the very best example that I can be, with or without FA.
I have become dependent on a lot in the last three years, but nothing more than Faith, Hope, and Love. I have Faith in God that He will continue to watch over us and bless us. I have Hope that one day there will be a cure for Friedreich’s Ataxia, for childhood cancer, and for Autism, all of which has impacted my every thought and action. I am completely dependent on Love! I could not have lived through what I have endured the last three years without the love from family, friends, and community. Their constant support, encouragement, and prayers help me face this disease head-on. I have learned that I must find the positive in such a cruel and negative world in order to create my purpose and meaning in this life. I am only human, facing a fight that seems only superheroes could win, but I will always dream of the day that I can be, once again, independent.