By Laura Reagan-Porras
It was a Monday, and I was in the pediatrician’s waiting room alone without my daughter. I was there to just pick up her blood work report from the previous week–or so I thought. I was asked to wait. I thought initially that the office staff was overwhelmed because of the crop of Monday sniffles in the waiting room. (Parents know Monday is the worst day to go to the doctor’s office.) So, I waited some more. About a half hour into the wait, I asked the staff if I could just have the paperwork. I was told the doctor wants to see you. If I were a cartoon character there would have been a bubble above my head that read, “x&@#$!” I knew immediately something was wrong!
About 15 minutes later, I was called back to a treatment room with the doctor and told that my daughter had a positive ANA, (anti-nuclear antibody). My daughter’s symptoms were joint pain and swelling with major fatigue that was getting worse with time, not better. The previous week, the doctor drew blood to check the white cell count of my beautiful, fifteen year-old. He later told us that he was testing for leukemia. Thankfully, the levels were normal. After dodging the cancer bullet, I breathed a sigh of relief and thought we were in the clear. But the positive ANA confirmed what I already suspected. My daughter was developing a chronic auto immune problem which may or may not develop into something more serious like systemic lupus erythematosus (SLE). It will take some time to nail down a definitive diagnosis, but I am grateful that we were referred to a pediatric rheumatologist, and my daughter is in treatment.
Her medical needs have a big impact on her ability to perform in school. It became obvious that we needed to make some decisions. My daughter is a sophomore at a very rigorous, academically advanced magnet school in our area. Looking back on it now, I can see that she had been struggling with fatigue all year, and her grades were suffering. The school is a 45-minute bus ride from our home. The daily bus rides there and back were taxing in and of themselves. Believing I already knew the answer, I asked her, “What do you want to do about school?” There are processes in place, given a medical excuse, that would allow her to be homebound and have a visiting teacher come to the house daily or weekly, depending on the need. Before she answered I told her that it was her high school career, and I would advocate with the school to do whatever it took to get her through this. To my surprise, my mother’s intuition about her desire to stay and fight the system if necessary was completely wrong.
She acknowledged that it would be hard to leave her friends, but she was knew she could no longer push herself as hard as she had been. I knew then she really felt bad physically. I talked to a teacher friend who helped me find an online high school system that would allow her to work at her own pace. We enrolled her. She is disciplined about her work online. She is working an academic plan one day at a time, one course at a time. The pediatrician advised us not to let her give in to how she felt, to push through, even a rigorous school curricula. I knew how she handled this first major hurdle would hold the keys to empowerment. Would she trust her own judgment or would she wander the disheartening and ultimately physically draining road of self-doubt? I remember saying to her, “Sometimes, you have to surrender to win.”
My husband is a chess coach. He teaches the importance of a strategic retreat. My daughter and I both felt the decision to leave traditional high school and do online high school was a strategic retreat to regroup, heal and grow. By supporting her choice, I hoped she would begin to experiment with the skills she would need to advocate for herself regarding her medical care, career choices and dreams. Adolescence is the perfect time to practice those skills in preparation for adulthood. If online high school didn’t work, I was sure we could re-negotiate another traditional high school schedule, (likely within our local district). I felt there were no mistakes in the decision-making process, only experiments and learning opportunities.
My brilliant daughter has blossomed in this challenging situation. She has remained disciplined with her studies and is advancing through the online curriculum. She uses her weekends and Facebook to stay connected to her friends. She attends church when she feels well enough. She continues to ride her horse, which is her passion, when she can. She has managed to hold on to this passion, horsemanship and equestrian sports, despite her health challenges. I suspect it will be key to her recovery. She has also used this time to plan her future in animal behavior, which means a college degree in psychology. She is also researching colleges. I am so proud of the way she is handling this health obstacle and all its implications. I am even proud of myself. I am proud I got out of her way, affirmed her choices and supported her growing trust in her own decision making.
Laura Reagan-Porras is a child advocate, sociologist and parenting journalist. She is the mother of two empowered daughters.
