A Life Beyond Reason_A Father's Memoir by Chris Gabbard
Author:Chris Gabbard [Gabbard, Chris]
Language: eng
Format: epub
Tags: Biography & Autobiography, Medical (Incl. Patients), People With Disabilities, Family & Relationships, Death; Grief; Bereavement
ISBN: 9780807060575
Google: yAGWDwAAQBAJ
Goodreads: 41796143
Publisher: Beacon Press
Published: 2019-05-28T00:00:00+00:00
In June 2005, August was suddenly and unexpectedly granted the Medicaid waiver. For many months Ilene had petitioned our elected representatives for help, attempting through letters, emails, and phone calls to find an official to pay heed to our situation. Finally a woman working in the office of State Senator Stephen Wise called back and, with the senatorâs help, she pulled strings with Floridaâs Agency for Persons with Disabilities and got our son off the wait list. After being granted the waiver, he became eligible for what in Florida is called Consumer Directed Care Plus, or CDC+. With it, we found that our out-of-pocket expenses remained exorbitant but that our financial hemorrhaging stopped. Subsequently, whenever Ilene contacted a state agency representative by phone, it was not uncommon for her to be addressed condescendingly. This was not true of the support coordinators and service providers interacting directly with families like ours at the local level; people who worked with us face-to-face generally were helpful. But the people in Tallahassee, the state capital, treated us differently. To them, Ilene was a mother whose child had a disability that must have stemmed from drug or alcohol abuse or some other bad behavior during pregnancy. Because of this supposed moral failing, she must have done something to cause August to be the way he was. His impairments provided them with an opportunity for mother shaming. To them, these problems disclosed her lack of love, willpower, and maternal dedication. Consequently, when she spoke with them, they always seemed to be on the verge of asking, âHave you stopped smoking crack yet?â Our encounters with the Tallahassee office of the Agency for Persons with Disabilities reminded me of a line from Aleksandr Solzhenitsynâs One Day in the Life of Ivan Denisovich: âHow can you expect a man who is warm to understand one who is cold?â
Then, in April 2009, everything in our familyâs domestic arrangement changed. August had grown big and heavy, and Ilene suffered a herniated disc in her neck brought about by lifting him. For several months she was laid up in bed. An articulating titanium disc had to be inserted into her vertebral column at neck level to replace the deteriorated one. Afterward, her doctor told her to not lift any weight beyond fifty pounds. Because August by then weighed more than seventy pounds, I had to assume all of his caregivingâhis daily dressing and hygiene and transportation to all doctor and therapy appointments, to his school each morning, and from the after-school facility each afternoon.
After Ilene went back to work full time, she took on the responsibility of making all the phone calls for Augustâs care and sorting through the mountains of bills. August generated a lot of paperwork from pharmacies, doctors, therapists, and our insurance company. She spent many hours on hold listening to canned music while waiting to speak with a representative of one company or another about problems with a medical bill, a medication error, or an insurance company claim.
Download
This site does not store any files on its server. We only index and link to content provided by other sites. Please contact the content providers to delete copyright contents if any and email us, we'll remove relevant links or contents immediately.
Harry Potter and the Goblet Of Fire by J.K. Rowling(3593)
Machine Learning at Scale with H2O by Gregory Keys | David Whiting(3527)
Never by Ken Follett(3503)
Unfinished: A Memoir by Priyanka Chopra Jonas(3188)
Fairy Tale by Stephen King(2906)
The Man Who Died Twice by Richard Osman(2791)
Will by Will Smith(2560)
Rationality by Steven Pinker(2139)
The Storyteller by Dave Grohl(2052)
The Dark Hours by Michael Connelly(2035)
The Dawn of Everything: A New History of Humanity by David Graeber & David Wengrow(2000)
Can't Hurt Me: Master Your Mind and Defy the Odds - Clean Edition by David Goggins(1989)
It Starts With Us (It Ends with Us #2) by Colleen Hoover(1977)
Friends, Lovers, and the Big Terrible Thing by Matthew Perry(1975)
The Stranger in the Lifeboat by Mitch Albom(1929)
Cloud Cuckoo Land by Anthony Doerr(1900)
The Becoming by Nora Roberts(1892)
New Morning Mercies: A Daily Gospel Devotional by Paul David Tripp(1806)
Einstein: His Life and Universe by Walter Isaacson(1775)
