By Sara Orris
My daughter has Neurofibromatosis Type 1. I find it easier to simply say my daughter has NF. It seems less frightening that way somehow. NF is a genetic disorder that causes tumors to grow on her nerves and can cause many other issues including scoliosis. The disorder manifests itself differently in every affected person and my daughter’s case is thankfully mild. We received a diagnosis when she was five and coasted along for five years. Yes, I took the literature offered by the genetics clinic, did a web search (which terrified me), and decided I could not worry about something that did not seem to be happening to my child. She was growing, thriving, learning—we did not see any of the horrible symptoms described by those websites and parent support sites. Then the beginning signs of puberty appeared and, as is typical with children with NF, they came early. All of a sudden she was tall and developing quickly into a young woman.
At her 10-year physical the pediatrician checked her back and we were shocked by a large protruding hump near her shoulder blades that her chiropractor had not seen at a regular adjustment just a month prior. Six months later Natalie was scheduled for surgery to correct severe scoliosis that, if not corrected, could cause her ribs to “float” into her lungs or heart, debilitating pain, and other horrible side effects. The surgeon described the worst case scenario for us to prepare for. This would a ten to twelve hour surgery; she would be in the ICU for two nights and the hospital for another five to seven. Once she was home she would need around the clock care while she regained her ability to stand and walk without pain. She would be out of school for six weeks.
I called the insurance company. They would cover the surgery and hospitalization but she needed to first meet her $1500 deductible and, even then, we would have to pay 20% of the surgeon’s bills. Then I checked my teacher’s union contract and spoke with the union president regarding my options. They were slim. I could use five “critical illness” days to care for her. I would then need to apply for FMLA and while I would not lose my position I would not be paid. Five? She would be in the hospital for more than that! Five? If someone has a “critical illness” I think by definition it would require being ill for more than five days. Five! After some tears I decided that I had no other option. My daughter needed me. I needed to be with her. She loves my husband but she needed me. This was a traumatic, terrifying life event for a little girl and I was going to be there with her–even if it meant missing a mortgage payment…or two. I petitioned the superintendent and asked for some rule-bending. If I got two doctor notes could I take five days for her hospitalization and five for her recovery? His answer was no and I knew I needed to respect his adherence to a contract. We struggled and figured it out and I returned to work at a point when my daughter still needed me but her grandmother was a suitable substitute. I was exhausted and emotionally spent and I did not give my job my all and that upset me even further. But I had no other choice—the medical bills were already arriving in the mail.
I hope the CT Campaign for Family Leave can help working mothers like me find a way to care for a child with a chronic disease. Children with NF or other chronic illnesses are already fighting a long, terrifying battle. They need their mothers by their sides focusing on nothing but their care—not how they will pay the growing pile of bills.
