A solo flight is a step toward independence for our daughter
Grace has already fought for a lot with LEMS, and will continue to battle
Written by |
Lambert-Eaton myasthenic syndrome stormed into our daughter’s life when Grace was just 15. Her friends were busy getting their driver’s permits, going to homecoming, and pursuing high school sports and various talents. They were going to parties and running on the beach.
The contrast of Grace’s life was staggering. Grace was so weak that we had to lift her out of bed in the morning. She could not attend school. Her arms were too weak to wash her own hair. She needed a wheelchair to get farther than three steps. Grace was losing what little independence she had while her friends continued to stretch their wings and fly.
For the bulk of her high school career, Grace relied on us for far more than her peers did on their parents. Learning to drive was out of the question. Her legs were too weak. She could no longer play the piano. We had to help her bathe, use the bathroom, and handle all other daily functions.
It took Grace four years to regain enough strength to start becoming more independent.
Eventually, she got a part-time job that accommodated her physical limitations. She no longer needed a wheelchair to get around. She enrolled in a local college and was able to attend classes in person. But she still had serious limitations due to LEMS.
As Grace got older, her Dad and I were very intentional about finding ways to give her independence. We knew we couldn’t push her physically, but we needed to push the boundaries of her independence to show her what was possible. We wanted to give her a taste of living beyond the walls of her parents’ authority and home.
Bravery instills confidence
Earlier this year, Grace’s younger sister flew to Texas to see our son and daughter-in-law. We didn’t think twice about putting Bethany on a plane by herself. But, as Bethany flew away for the weekend, we could see the yearning in Grace’s eyes. Here was one more thing she was missing out on. Sure, one of us could take her with us on a trip to Texas. But we could see she needed the opportunity to go by herself. She wanted that time alone with her brother and sister. And we wanted her to know she could do it.
We broached the subject of Grace traveling alone to Texas. We discussed her fears and concerns, but beneath it all, we could see a spark in her eyes. She wondered if this was really possible? Could she do it? We knew she needed to know she could.
On March 20, we took Grace to our little airport in Florida. We offered to arrange wheelchair service to make it easier for her, but she refused. Her direct flight would leave Florida and land at Dallas Love Field two hours later. Her brother would be waiting for her at baggage claim. And she was off!
The bravery it took for Grace to get on that plane alone is astounding to me. She walked the airports, flew across the country, and spent a fabulous weekend being spoiled and doted on by her brother and sister. She came back home a more confident young woman.
With LEMS, you have to fight for a lot. Grace has fought and is winning the battle. She will continue to fight for her independence, and we are committed to helping her achieve her goals. I am confident she will live a fully independent adult life.
Battle on, my friend. Don’t give up. Tomorrow may just be the day you fly.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.
Leave a comment
Fill in the required fields to post. Your email address will not be published.