One very cold winter morning, my fourteen-year old daughter had a seizure and was taken to the emergency room. Numerous tests were administered. The doctors that morning did not find anything physically wrong with my daughter based on the results of the tests.
Hours later, I took her to our general practitioner who also ran a series of tests. All of the tests came back negative. Our general practitioner made several referrals to specialists.. Their tests came back negative also. Our general practitioner was perplexed and decided to refer her to a psychiatrist.
I recall us sitting in the psychiatrist’s office being asked a series of questions. After several hours of interviewing my daughter and me, he concluded that the illness was probably physical and not emotional. On our drive home my daughter looked up at me with a smile and said to me that the psychiatrist needed counseling, not her. Light moments like that kept us with a sense of humor which helped us deal with the situation.
Before my daughter becoming ill, I was determined not to spoil her. She was our only child. My motto was “Do you need that”? After she became ill I went on a spending spree for her. One day I came home with a pair of navy blue shoes for her. She politely opened the box and looked up at me. She told me the shoes were really beautiful but that was the sixth pair of expensive shoes that I had bought her in a month. I knew I needed to get a grip on my emotions and I felt guilty that I was on such an emotional rollercoaster especially since I was a counselor by trade.
The following twelve months were very traumatic for my daughter. She became sicker and sicker and missed many days from school. She lost a lot of weight, her hair fell out, and her equilibrium was off which resulted in her falling often. She also experienced problems with her vision. The general practitioner suggested that my daughter return to the rheumatologist for another evaluation but instructed us to ask to see a different rheumatologist. This time the rheumatologist started her on medication, took blood and ran more tests. He gave her a 2-week follow-up appointment. At the follow-up he diagnosed her with Systemic Lupus Erythematosus . He also told her that when he saw her 2-weeks prior, he felt 99% the diagnosis would be Lupus.
The term Lupus was not completely foreign to me because a 6th grade student at the middle school where I worked as a school counselor had Systemic Lupus Erythematosus. She spent many hours in my office talking about the disease and the frustrations about having such a debilitating disease. She wore a wig because her hair fell out. Wearing a wig was very upsetting to her because she was teased often by other students. She left our school after a year and a half to live with her father.
A week after my daughter was diagnosed with Lupus, the student’s mother called me to tell me her daughter had lost her battle with the disease and died. The news was devastating. I remember going to the restroom and crying uncontrollably for the mother and for myself. The fear of losing my 14 year old set off a panic in me that I can’t describe.
The year prior to her diagnosis, when my daughter spent many days traveling to specialist after specialist, was one of the most difficult years of my life. I tried to schedule appointments early mornings or afternoons to minimize the time she miss school and the amount of time I miss from work. Being a counselor in a middle school was taxing even in normal circumstances. Often times after listening to students problems and answering calls from irate parents all I felt like doing was turning out the lights and curling up in a ball and going to sleep. Instead, I managed to present a warm and caring atmosphere for the students and the parents.
Each day looking at the changes in my daughter left me feeling helpless and a pain in my heart that medication couldn’t ease. The fear of not knowing what was wrong was worse than the fear of knowing. I lived that year in a fog. Several days on my way to work I would be so consumed with my daughter’s illness that I passed my exit to work. One day in particular, I drove approximately 10 miles pass the exit. When I realized that I had driven so far pass my exit, I pulled off on the shoulder and cried. It took several minutes for me to refocus and turn around and continue to work. Another day I went to the grocery store and purchased groceries. I left the groceries on the sidewalk to get my car. I got in the car drove home pull up in the driveway and couldn’t remember why I left the house. I sat in the car for what seemed forever with tears streaming down my face. Then I heard a soft whisper in my ear, “groceries my dear”.
Many days on the 45 minutes drive home from school, I stopped for coffee to drink to keep me from falling asleep behind the wheel. I fell asleep several times traveling home and I know it was only God’s grace that keep me from having a major accident.
I always felt that I was a person of strong faith. Even though my family’s faith was tested during that year, we didn’t lose hope and give up. We continued to pray daily and seek answers. One night during Bible study I felt that my family’s faith was being questioned. The discussion in class that night in essence was that if a person had enough faith, physical healing would take place. I left the complex that night and drove home in a fog. I didn’t remember stopping for red lights. All I remember was the tears rolling down my cheeks and a talk I had with God. I told God I could handle whatever the diagnosis was but I couldn’t handle not knowing. I walked in the house that night with a sense of peace that things would be alright. The next week my daughter had a diagnosis.
The rheumatologist that made the diagnosis was very knowledgeable. He encouraged us to attend workshops and conferences to learn as much as we could about the disease. He talked to us about living a productive life with lupus rather than succumbing to the disease.
After treatments, my daughter began to feel better and excelled in school. She graduated from high school and college with honors. She also earned a doctorate in Political Science. Currently, she leads a productive life and manages pain and the disease.
The Butterfly Lesson: My advice to parents of children or teens with lupus is . . .
1. Don’t be afraid of the disease. Embrace it and learn as much as possible by attending workshops, conferences, reading literature and visiting reputable internet sites such as the Lupus Foundation of America, the S.L.E. Lupus Foundation, or the Lupus Alliance of America.
2. Find a doctor that listens to your concerns and is knowledgeable about immune disorders including arthritis, lupus, chronic fatigue, fibromyalgia, etc.
3. Don’t assume that your child is a hypochondriac. Embrace her or him and offer positive ways of reducing some of the stressors in your child’s life.
4. Don’t embrace people that question your faith. Your level of faith is your personal journey with God.
5. Celebrate life to the fullest. This may include changing and rearranging some of the things in your family’s lives.
Marier (pictured right) and Katina (pictured left) Stapleton show off their Butterfly Style!
Marier Stapleton, in addition to being my mother, is a retired school counselor.