Wednesday, March 19, 2008

ALS - Stealer of Dreams

Living My Dream
Around the time my ALS symptoms began in October 2004

Not many people get to say they've gotten to live their dream, but I did. Until being diagnosed with ALS in August 2005 I was a flight paramedic/RN. The saying goes, "Never confuse your career with your life." Never have those words rung more true.

My LIFE is one of a single mother of three children, all with disabilities. My youngest child, just 10 years old, still lives at home with me. When I wasn't in the helicopter, ER or ambulance, I was likely to be found at the regional children's hospital with my son, at therapy or in meetings with the school. Time at home consisted of arranging our world to meet the needs of my son's disabilites.

Christopher wearing "Mommy's" Flight suit

As a single parent of children with disabilities, life was always complicated but I have always felt that I was my children's first and best advocate. To be anything less would have felt like failure to me.

While working and raising three special-needs kids, I also squeezed in three college degrees, the last one completed 2 months after my diagnosis with ALS. I must admit that when I look back now, knowing that ALS would change the course of my life so drastically, maybe I wouldn't have gone back to school. After all, while I love learning, the ultimate goal was to improve my marketability and become more successful professionally.

I loved my job and I am honored to have been entrusted with caring for the "sickest of the sick". The best part of flying came when I completed a patient flight and realized that maybe, just maybe, I "made a difference for that one."

When I was diagnosed with ALS, my world was quite literally turned upside down. I went from flying in a helicopter to sitting in my wheelchair in front of the computer most of the day. My son's daily hands-on care is provided by a loving friend and I can often do nothing but sit and watch.

ALS has robbed my son of his advocate, it has robbed me of my career and has robbed society of someone who really did try to make a positive difference every single day. Yet, I am determined to make the best of the new chapter in my life that has been thrust upon me.

Please, help us find a way to stop this stealer-0f-dreams!


Elizabeth said...


You are a wonderful person. My son follows your dream and worry what will be ahead for him in 15-10 years. If he gets this or something similar, his dreams will be changed as well.

It will be becasue of people like you and my brother setting an example of how to live, rearrange for challenges and make each moment count. For all you did, now it is time for others to do for you while you teach them how to treat and care for a person with ALS or similar.

I say similar because in the last 10-15 years more has been learned and new disease found to not lump everyone into ALS. Research and awareness has been and needs to be the continued Banding together drives.


rknt50 said...

Your letter speaks volumes.

pattyf617 said...

Awesome letter Claudia.


denny_fl said...

Claudia, what an amazing spirit you are! You looked pretty good in that flight suit too! LoL... I sure appreciate your knowledgeable posts on lwals. If this letter doesn't get us attention, there's something wrong!