Writing a profile about your child is hard. What do you say? How do you share all the little things that make your child unique and balance that with the medical difficulties that she faces? Our daughter, Miranda, was born premature and spent six (agonizing for us) weeks in the NICU. She is now 12 years old. She loves stuffed animals. She started talking at 11 months old and hasn’t stopped since. She excels in Science and enjoys swimming. Oh, and she has Neurofibromatosis Type 1 diagnosed at two years of age.
At her 9-month checkup Miranda’s pediatrician told us to “keep an eye” on a dark patch of skin on her thigh and to let him know if she developed any more spots. It might be nothing, he said, but it could be an early sign of Neurofibromatosis. We went home and instantly regretted Googling it. By 18 months, she had developed more freckles and by the age of two we had scheduled her first neurology visit. Between the café au lait spots and the Lisch nodules, we were told that Miranda most likely had NF1.
So how did our lives change? In many ways it didn’t. We were raising a spunky and highly verbal toddler who threw tantrums and didn’t like green veggies. We took her to the park where she would swing for hours if we let her. We taught her to ride a bike with training wheels. At the same time we learned to scrutinize every bump or pain – we still keep a pain log just to track things. Did she fall at the playground or was that bruise from something else? When she complained of a sore knee in Kindergarten, Miranda underwent an MRI that uncovered a plexiform neurofibroma running the length of her sciatic nerve. Life changed more at that point.
Elementary school brought its own set of challenges. Miranda had attentional difficulties and struggled socially with her peers. She started occupational therapy and physical therapy in first grade. We also began working with the school administration and counselors on a 504 plan, which was particularly frustrating as NF is not well known or understood in an educational setting, in spite of how common it is. Miranda underwent psychological testing at Children’s Hospital in part to help us better understand how NF1 was affecting her, and in part, as a tool to show the school district the kind of classroom support that she desperately needed. The 504 plan eventually transitioned to an IEP, but it is still a challenge to get teachers and school administrators to look past the highly verbal, outgoing, and enthusiastic young girl and recognize the classroom obstacles that she faces.
We have asked Miranda before how it makes her feel to have NF1. She has replied that it’s okay. If she didn’t have NF1, she wouldn’t be the same person. She wouldn’t be able to visit Children’s Therapy Services. She wouldn’t be involved in Club NF. She wouldn’t have met Dr. Gutmann. As her parents, this is both a heartbreaking and uplifting answer. We have no idea what the future holds for her health. However, we are hopeful that continued research eventually will result in new treatments. Importantly, no matter what NF1 brings to our family, we will stand beside her. We will teach her how to take care of herself and help her live the life she is meant to live. Even when that means limiting screen time and teaching her that curse words are not an appropriate way to respond when her sister is annoying her. After all, she is still a 12 year old girl who just happens to have NF1.
– Written by Steve & Deb Ehrstein