For August’s story, go to A Life Beyond Reason
Oct. 15, 2013:
Living with cerebral palsy (he was a spastic quadriplegic), cortical visual impairment, and severe cognitive impairment, he also was developing dystonia. Only late-yesterday afternoon—when it appeared that August had stabilized, and his parents were preparing to bring him home from the hospital—did they discover from Dr. Louise Spierre the name for his body’s mysterious arching.
This irregular twisting posture had been coming on over the last several years. Dystonia accounts for his inability to transfer from J- to G-tube feeding (see earlier post August in September). In the last week the dystonia was quite pronounced, no doubt made worse by the stomach flu he had had the previous weekend. The dystonia’s source was a different damaged part of his brain than the injured section causing cerebral palsy. Hence, the baclofen pump, which manages the spasticity of cerebral palsy, had nothing to do with with the dystonia.
Late last night he took a sudden and dramatic turn for the worse, and this was due to complications from dystonia.
The extreme extension distorted his neck, making it difficult for him to swallow and manage his secretions. Evidently, in the late evening while laying in his hospital bed, he aspirated secretions and immediately had extreme difficulty breathing. Because his parents had him on A.N.D. (Allow Natural Death) status, he was given 100% oxygen through a mask over his nose, but no further measures were administered besides the pain-relief of morphine. His mother Ilene and father Chris were with him, and he passed away relatively quickly.
In 2011, a widely read essay about August appeared in Papa PhD: Essays on Fatherhood (Rutgers Univ. Press) and was reprinted as “A Life Beyond Reason” in The Chronicle of Higher Education and other publications. The essay argued that, despite his impairments, August was living a life full of joy and that his was a life worth living.
In lieu of flowers, please send donations to DLC Nurse & Learn, 4101-1 College Street, Jacksonville, Florida, 32205 (904) 387-0370, where August attended preschool and after school for nearly 13 years. There he was loved by all his classmates and teachers and will be dearly missed.
He also will be missed by his classmates and teachers at the Mt. Herman Exceptional Student Center, especially by his buddy, Brandon Callahan, son of Sarah Brown.
He is survived by his eleven-year-old sister, Clio.
3655 San Jose Blvd.
Jacksonville, Fl 32207
His present loving caregivers should be acknowledged: Katrina Johnson, Amber Boetel, and Jordon Lee, as well as the many who have worked with him in the past: Tara Montavani Stamm, Jenna Lee, Kathyn Grifo, Ashley Koerick, Amanda Vinson Grubbs, Jamie Berube Cornman, Jenna Strongin, Stevie Coburn Thomas, Rory Niccolaides, Christina Niccolaides, Sarah Cortez, and Meridith Fruchtenicht.
August loved music, especially when it came through the earbuds of his iPod. Here two of his favorites, “Bananaphone,” sung by its composer, Raffi, and “All Around the Kitchen,” sung and performed by Dan Zanes and his band.
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