Our baby girl was perfect, simply perfect.
The first clues of NF2 were subtle. She was a little late to talk inteligibly and required some speech therapy, but it was no big deal. When she started taking ballet with her friends at three, motivated mainly by the pink tutu, the first task was to hop on one foot. When she couldn’t do that, she practiced alone in her room for a week until she came out gleefully hopping on one foot for laps around the house. Looking back, I realize there was an NF2 tumor already working on her.
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| Me and my daughter, my hero Me looking on as Destin guards Anne - '87 After her 4th marathon- NYC '10 |
e. I said, “just a minute, let’s talk about that.” To follow up we scheduled a hearing test with an audiologist who at long last determined she was faking out the test, giving appropriate responses for the “bad” ear when she felt a vibration through the bone. This led to an MRI.
In the early nineties, I carried a pager rather than a cell phone. I remember where I was when I got the page, and the pay phone I used to call my wife, and the window I was looking out when we got the news that our perfect child had “neurofibromatosis type 2,” something I had never heard of.
Over the next week, I did what I do. I researched. Somehow I found Dr. MacCollin at Harvard and talked with her by phone. She told me there is wisdom in “watchful waiting,” and to always seek second and third opinions before any surgery. She said that the worst outcomes she saw were when doctors who knew litte about NF saw a tumor and felt that had to immediately cut it out right away. So we watched and waited.
It was nearly two years later, on a Saturday morning in the middle of the Atlanta Olympics. We had tickets for some of the events, though none of the really “hot tickets.” My little girl, a Brownie looking forward to third grade, came down to Saturday our family pancake breakfast with one side of her face distorted. At first I thought she was just goofing around. After a few minutes we realized that the tumor the doctors had been watching was affecting a facial motor nerve. On Monday morning I was on the phone to Dr. MacCollin at Harvard. She gave me a short list of surgeons who had enough familiarity with NF2 to consider, and I started calling. Someone from South America cancelled a scheduled surgery at House Ear Institute and within two weeks we were on a plane to see Dr. Brackman in Los Angeles.
In scheduling surgery I had a long talk with a nurse at House Ear. I asked her what to expect. She told me as kindly as she could of the sad outcomes they too often saw with NF2 patients. I recall laying across the bed, a hardened middle aged man, crying my heart out for my little girl, then pulling it together to put up a cheerful front for her. She later admitted that she was afraid she was going to die. So was her little brother who went to stay with cousins.
In LA, the doctors told us that they expected it would be necessary to sever her facial motor nerve, and that she would never smile again on that side of her face. Maybe in a few years she could hold her mouth straight. That night before surgery we prayed. I got on the phone with cousins across the country and we prayed together. In the morning, before surgery, I got a container of salad oil from the cafeteria and followed the directions in James 5. All through the day I prayed.
When she woke up in ICU, she was grinning from ear to ear and asking for a hot dog. The other ICU patients had unbearable nausea and couldn’t bear the thought of hot dogs.
The next decade was often an ordeal. She returned to her elementary school bloated by steroids with hair combed over the shaved side of her head. Mean kids ostracized her and friends didn’t know how to come to her aid. We kept seeking the best advice and moved her from one school to another seeking the best fit. By 7th and 8th grades she was at a very small school for kids with learning differences, where she began to thrive. However, she insisted on going to a “regular high school.” She chose a visual arts magnet program at a high school a few miles from home. At freshman orientation our chubby little girl asked what were the no-cut sports, and signed up for cross country, swim team and track. After driving her to the first morning of cross country practice at 6:30 AM, I sat in the car and watched as she struggled to run half a lap. Little did I suspect that she would become a marathoner and triathlete.
The summer before her senior year, her doctor said the tumors on her spinal cord and in her “good” ear had grown. It was time to get something done about them. He thought she could get past her senior season in cross country first. During the fall it appeared that her gait was thrown off by the spinal cord tumors. She ran several meets with stress fractures in both tibias and both fibulas before she finally had to stop. (At the end of the season she received a special award for courage.) In October we flew to Boston where Dr. MacCollin told her that someday she would become deaf though probably not right away. My little girls said, “yeah, maybe when I’m 80,” but had trouble hearing us talking to her at the art museum afterward. She wept silently on the flight home. Her hearing grew fuzzier over the next few weeks.
The day we flew back to Boston for surgery on her spinal cord tumors, her hearing blinked out. We were reduced, for the first time, to communicating by writing on a whiteboard. While Dr. Coumans was skillfully removing spinal cord tumors we were on the phone to House Ear Institute scheduling surgery to decompress the tumor pressing on the auditory nerve of what had been her “good” ear. As soon as she was released to travel we flew directly to LA. At that point she had 4% speech recognition. Decompression surgery was attempted right before Christmas. We would have Christmas in the hospital, so we flew her brother in from Atlanta and I bought a tacky metal Christmas tree for her hospital room. She got a staph infection in her back that scared us and the doctors to death. We remained in LA until after New Year’s Day and for the first time sought out theaters with captioned movies.
My daughter returned for her last semester of high school using a captionist in the one remaining academic course required for graduation and began taking ASL at a community college in the afternoons. She insisted on running before it was permitted, rebelled at restrictions on driving until we could get her checked out by a hospital program that clears people to drive after medical situations, and within a few weeks drove herself to a meeting of the Association of Late Deafened Adults. Her college choice quickly narrowed to Maryville in Tennessee, which has a deaf studies program and a spot for her on the cross country team. She began networking with other young folks with NF2 through the new technology of Facebook, and never slowed down.
The following fall, she had to be at Maryville for a cross country team meeting at the end of the day of my mom’s 80th birthday luncheon. I had just gotten up to talk to the assembled family and friends when my little deafened girl came up, gave me a hug and a kiss, and walked out to drive away to college. That was the second time I cried.
Through her freshman year of college, communication with doctors did not stop. We were advised that she could not wait til summer for surgery to remove the tumor in what had been her “good” ear and install an ABI, as there was severe risk of facial paralysis if she waited. During her spring break we visited RIT / NTID in Rochester, then she ran her first full marathon in Atlanta with a crew of girls from her dorm at Maryville turning up to cheer her on. Then we all flew to LA again for yet another operation, taking along our high school senior son and his then-girlfriend to spend their spring break exploring LA together. Little did we know that he would wind up spending several years in the LA area.
Some people who lose hearing at 18 crawl into a hole, but she never slowed down. As soon as her ABI was turned on, she went to DC for the summer for a crash course in ASL at Gallaudet, going for long runs all over the nation’s capital, and then transferred to RIT/NTID at Rochester. She never really moved back home after that. The next summer she worked at Blue Ridge YMCA Assembly in NC, the following summer at YMCA of the Rockies in Colorado, then at a camp in Pennsylvania, followed by a summer in school at Rochester. She never slowed down in her running, completing several marathons. On a Campus Crusade for Christ spring break trip, she connected with a great guy who was supposed to interpret for the deaf girl. He said she didn’t need help but they had fun. He proposed at the finish line of her first triathlon this summer, and a couple of months later they completed a Half Ironman Triathlon together. (How can anyone ride 56 miles on a bike with no balance nerves?) Drilling daily on speech recognition with her ABI, she now has over 90% speech recognition without seeing the speaker using the ABI alone, and we can have telephone conversations again.
My little girl who taught herself to hop on one foot despite lack of balance when she was three, and who drove herself to the Association of Late Deafened Adults when she was a newly deaf high school senior, has no “quit” in her.
She is my hero.
