- Posted February 14, 2014 by
north branford, Connecticut
This iReport is part of an assignment:
Living with a rare disease?
living life through my daughters rare disease
Nineteen years ago a doctor saying the words “Friedreich’s Ataxia” changed my life forever. I was not diagnosed with this rare disease; however, I would have given anything to have been the one diagnosed with it rather than my then 8-year-old spunky, active daughter. A couple years later, my younger daughter was also given the same grim diagnosis at the age of six.
My name is Mary and I am the proud mom of two beautiful young women. I am as proud of my girls as any typical mom, although life has been anything but typical.
I remember with such happiness my first few years as a mom, when our lives were filled with all the same fun and excitement I enjoyed as a child. Each of the girls was unique: Sam a tomboy playing every sport she could, Alex focused on one thing, dancing. She would dance from morning to night.
We enjoyed this wonderful taste of a normal life. I think back and revel in the simple pleasures we enjoyed, running together, picking fresh vegetables from the garden, sitting by our brook and hanging our feet over the bridge.
Both girls are now 27 and 23 and our lives did take a different path since that day 19 years ago when the first diagnosis came. It isn’t what any of us had planned, but over time we have embraced it. However, society hasn’t always embraced our existence in the same optimistic way. Friedreich’s Ataxia is a rare progressive neurological disease, and my daughters, now young women, live each day in a wheelchair. Their speech is slurred, and they face physical challenges and require aides to help them with daily life.
Together, we have been active for an organization, The Friedreich’s Ataxia Research Alliance working to find a cure, and they have participated in many drug trials to help people who will later be diagnosed with this disease. This is where we find hope, and putting our energies where there is hope keeps us going.
It has not been easy to sit by and watch as they missed out on all the fun things that a typical life brings: simple things like driving a car, going to dances, hanging out with girl friends, going on first dates and weekend getaways. People tell me that there is no reason they should miss out on these life moments but the truth is other kids in these typical activities never included them. They coped with the disappointment, of course, and grew stronger. They have wonderful senses of humor and are creative and loving, and perhaps because of this strength, we have formed a very strong bond as a family. I can say that we are a family like no other. I do wonder some times what it might be like for one day or even one hour to move through a day without this disease but then I stop myself. I stop because the reality is that this is our life. And acceptance is part of what makes our life a success.
At the end of each day, as I lay in bed, I give thanks for my ability to find gratitude in our lives. I am grateful for being able to overcome any anger or bitterness at watching my daughters struggle each day with this disease and I move forward for my daughters with dignity and grace. Most of all, I hope that as a family, we can somehow be a small part of making a difference in the world by teaching by example the importance of practicing kindness, accepting all people and treating each other with dignity.
Maybe just maybe this journey of ours will one day help to make the world a kinder and gentler place. Wouldn’t that have made our existence so worth it!