Making It Happen
Another parent once gave my husband and me a phrase that has helped us through this life we didn't expect or choose, parenting a child with special needs: "The highs are higher and the lows are lower." Let me tell you about one of the highs.
My daughter Sarah has a rare progressive bone disease called fibrodysplasia ossificans progressiva, or FOP. FOP causes skeletal muscle to turn into bone, and it has progressively locked all of Sarah’s major joints so that she can barely move. She uses a power wheelchair and is dependent for all tasks of daily living.
Last spring, I learned that our patient support group, the International FOP Association, was sponsoring a three-day event for young adults with FOP in San Diego. We live 1100 miles away in Seattle. My husband couldn’t come and I couldn’t travel by plane with Sarah without his help.
Over the years we have made every effort to attend IFOPA-sponsored gatherings and have sometimes made them our summer vacation. Becoming friends with other “FOP’ers” and FOP families has given us friends--soul mates even-- who share the experience of living with FOP, support medical research, and pray for treatments and a cure. Attending an IFOPA event is like going to a family reunion. But traveling to San Diego? One thing I hate about family life with FOP is when we have to say “we can’t, it’s too hard”.
I thought, “It’s not in London, or Florida. It’s just two states away. We can’t not go!” So Sarah and I planned a road trip. We recruited Sarah’s younger sister to share the adventure and help with driving. We spent three long, hot days driving to San Diego. The young adults’ gathering was held at a fine downtown hotel and we joined twenty young people and their families from California, Colombia, Venezuela, Illinois, New Jersey, and Maine. We heard a hopeful update on the discoveries being made in FOP research, Sarah was examined in clinic, and we attended the small group meetings for FOP’ers, siblings, and parents. We reunited with old friends and made new ones, listened to their trials and triumphs, and shared our own. The FOP’ers got makeovers, twenty of us walked and wheeled through the neighborhood to eat Italian at Buca di Beppo’s, and we were taken across town in wheelchair vans to visit the San Diego Zoo.
At the end of the event, it was hard to say goodbye, but our adventure wasn’t over. To break up the long drive home and keep us from feeling let-down after being with our FOP friends, we spent a day visiting San Francisco and a day relaxing at Crater Lake National Park. Eleven days, six hotels, and 2900 miles later, we arrived home, tired, but safe and exhilarated. The three of us enjoyed this special time together, and we are proud of ourselves for not letting the difficulty of the task prevent us from doing what we really wanted to do.
