I'm a single mom diagnosed with ALS (Amyotrophic Lateral Sclerosis/Lou Gehrig's Disease) I have three children, all of whom have Fragile X Syndrome and autism spectrum disorder (ASD), one of whom, Christopher, still lives at home with me. Christopher is homeschooled. It is such a joy to be able to spend one-on-one time with him! His health is stable now that he is home and he is free from the anxiety caused by the frequent bomb threats and other violence in his former school. He loves to learn and I love watching him work so dilligently! He loves the Gaither Gospel Hour, has a special affinity for B-17's, the Founding Fathers and anything related to emergency services.
My older son, Phillip (“Phil”) lives about 30 minutes away. Phillip lives with his father and step-mother (he is unable to live on his own). He enjoys Scooby Doo and helping with chores around the house. My daughter, Catherine, lives here in town although we don't see her as often as we'd like. She is a creative writer (poetry is her favorite), an instructor at the local community college, and a lover of Jane Austen and "Dr. Who".
For nearly two decades I served my community in emergency services. I was a volunteer firefighter and EMT, a paid-reserve firefighter, paramedic, Emergency Department RN and flight medic (helicopter). It wasn't just a job. It was part of who I was.
Special Needs Advocate
My second full-time job was advocating for my children. Along the way I learned a lot about the ins and outs of IDEA, ADA and other special education and disability issues. It was natural that I become an advocate for others in similar situations.
I began having slurred speech in October 2004. In August 2005 I was diagnosed with ALS. I went from being "gregarious" and "articulate" to being presumed-to-be mentally impaired. My voice is weak and sometimes I can barely speak above a whisper. I’m frequently very short of breath. I use a wheelchair full-time. I'm in nearly constant pain from my increasing spasticity. I sleep using a breathing machine. 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. I treasure the time I have to spend with my children now. 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 am grateful to God for Amy, Our Angel Caregiver, who lives with us. Without her, I don't know how we would survive! God has truly blessed us by calling her into our lives. She is AMAZING!
Life is often hard, but always blessed. It is amazing to think about how coming to the end of my physical, financial, emotional and relational resources helped me learn to truly rely on God!