Claudia's Journey

"We must let go of the life we have planned, so as to accept the one that is waiting for us."

Who is Claudia?


About me: I'm a single mom who loves my church (The Church of Jesus Christ of Latter-day Saints), watching things grow in my garden, reading and music. I was diagnosed with ALS (Amyotrophic Lateral Sclerosis/Lou Gehrig's Disease) in 2005.  

About my kids: I have three children, all of whom have Fragile X Syndrome and autism spectrum disorder (ASD). The youngest, Christopher, still lives at home and is homeschooled.  He loves Gaither music, LDS Missionaries, World War II warbirds, firetrucks, helicopters and going to church (not necessarily in that order). My older son, Phillip, lives about 30 minutes away.  Phillip lives with his father and step-mother (he is unable to live on his own). He loves to eat out and help around the house when he?s not watching Wheel of Fortune or the Doodlebops. My daughter, Catherine, lives here in town. 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".

About my career: 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 rotor-wing flight medic. I was passionate about my work. Although I can no longer be employed, I maintain my nursing license. Medicine will always be a part of who I am. Along the way I became an advocate for special needs children and persons with disabilities. Although I don?t have to worry about IEP?s anymore, I know more about them than some professionals. I got ?on the job? training!

About my ALS: 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.

About my prognosis: 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.  

About my blessings: 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! I am grateful for a safe home, food to eat, a vehicle that allows me to be a part of the world outside my home, sunshine, rain, warmth in the winter, breezes in the summer, hugs, laughter, faith?.I am grateful for the restored gospel of Jesus Christ and for the LDS church. Our lives have been changed in profound yet simple ways by the gospel. I?d love to tell you more about how this has transformed our lives. Please send me an email!!!

 

 

 

 

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