I'm a single mom diagnosed with ALS (Lou Gehrig's Disease) and a primary immune deficiency. I have three children, all of whom have Fragile X Syndrome and autistic spectrum disorder (ASD), one of whom still lives at home with me and who has struggled with his own set of physical challenges in the course of his life. He is home schooled due to his own issues with immunity. It is a joy to work with him! He's inquisitive and loves to learn new things.
My older son, Phillip (“Phil”) comes as often as he can (he went to live with his father in August 2006). My daughter, Catherine (“Cat”) finished her Master's Degree and is now adjunct faculty at Ivy Tech in the English Department. She lives here in town, so we see her more than we did when she was in Terre Haute! Christopher is so happy to have her around more, but he misses Phillip tremendously!
I have always had a passion for helping others and that passion led me to Emergency Services. I always said "I don't wish bad things to happen to people, but if they do, I want to be there!" I was one of those persons who runs in when everyone else is running out. As a First Responder I had found my calling! Many days, after working all night (12-hour nights in the emergency department or 24-hour shifts on the ambulance/fire department/helicopter), I spent all the next day at the local children's hospital for doctor's appointments or therapies, or at school in 'case conferences'. It was a busy life but one I loved.
Special Needs Advocate
While working (and volunteering) as a First Responder, I had another full-time job: advocating for my children. I learned as much as I could about Fragile X Syndrome and autism and I became a resource person for families with newly-diagnosed children. I learned the "ins and outs" of IDEA, Article 7, ADA, IEPs, Section 504 and a whole slew of other acronyms that I never wanted to learn. I made literally hundreds of friends from all over the world online via the Fragile X Listserv.
I began having slurred speech in October 2004. In August 2005 I was diagnosed with ALS. Prior to my diagnosis, my life revolved around my kids and my job as a flight paramedic/RN. My ALS progression has been slow and I was able to continue flying and working in the ER through 2006.
Once considered “articulate,” my speech is slurred to the point where waiters and sales clerks assume I’m mentally impaired and speak to any adult accompanying me preferentially. My voice is weak and sometimes I can barely speak above a whisper. I’m frequently very short of breath. I am confined to a power wheelchair, although I can still stand to transfer. I have muscular fasciculations (little "twitches") all over my body and I have joint pain, muscle pain and increasing spasticity. I use an AVAPS (non-invasive ventilator) each night to allow my diaphragm to "rest". All my symptoms are progressive and eventually, while mentally alert and with intact sensation, I will become totally paralyzed. At that point, the choice becomes "life on a ventilator" or death.
My ALS progression is VERY slow. Most people with ALS only live 3-5 years from diagnosis. My slow progression is a blessing…..and a curse. The blessing is obvious: more time to spend with my children and friends. The curse is a little harder to see, unless you have seen someone progress through the stages of ALS. I will pass through the stages of loosing functioning in slow-motion. With the loss of functioning comes an increased need for resources that I simply don’t have…financially and logistically. I treasure the time I have to spend with my children now and trust my Heavenly Father to meet my needs. He has been very faithful! It is amazing how one's priorities shift when faced with a terminal illness. "Stuff" just isn't that important anymore!
My Life Now
I spend time each day watching TV with Christopher. This is one of the few activities that are left that we are able to do together. He loves anything on GaitherTV (Bill and Gloria Gaither have their own ROKU channel). In the summer we are able to get out and spend as much time as we can at the local airport watching planes. Christopher loves warbirds, especially, and a B-17 and B-25 both have visited the airport in the past few years. It is so fun to see the world through his eyes! In the winter I'm unable to go outside because the cold causes my spastic muscles to cramp, so I'm indoors from about November to March (last year, October to April!). It is during those months that I have the opportunity to spend time with Christopher, work on digital scrapbooking and read. If someone had told me that I'd be homebound 6 months of the year and NOT go bonkers, I wouldn't have believed them...but it's not so bad. It's all about what I make of it!
I am grateful to God for Amy, a friend and caregiver, who lives with us. Without her, I don't' know how we would survive! She is AMAZING!
Life is often hard, but always blessed. I am so grateful to be surrounded by the love and care of the Muncie 1st Ward of the Church of Jesus Christ of Latter-day Saints who are truly my family in every way.