For August’s story, go to A Life Beyond Reason
Oct. 15, 2013:
August Chazan-Gabbard passed away this morning at about 2:20 am at Wolfson Hospital in Jacksonville. He was fourteen.
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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Thank you so much for sharing all these sweet memories of August, There truly are no words to explain how all of the students at Mt. Herman have touched my life and will continue to live in my heart forever. This is a beautiful tribute to August and he will always be remembered for the wonderful young person I had the joy of knowing. My thoughts and prayers are with you.
Dear Chris, Ilene and Clio,
I am so saddened to learn of August’s passing. As I look at all the pictures posted, I see that he remained the beautiful, sweet and joyful boy that I remember as an infant and toddler. I still recall how much he enjoyed playing with shiny beads. August will always be lovingly remembered by those that knew him and will forever remain in our hearts.
Your expression of love and devotion to Augie is an inspiration to me. I am a better person for knowing you and your family. I had the misfortune of seeing Augie during his most difficult times. I hope that I was supportive to your family along your earthly journey and that I was supportive as you struggled to make difficult decisions. Augie is a unique and special spirit. I hope that our paths cross again. Thank you for allowing to be a part of your life. I am a better for it. I pray that I had a postive impact on Augie’s and your life as well.
Chris, I’m an RN who took care of Auggie a few times. Unfortunately, the nature of my role meant I only encountered him when he wasn’t feeling well, and I never saw him at his best. But I always looked at the pictures posted around his room and smiled, imagining him as his usual self. I just wanted to comment here to tell you that, despite the limited number of encounters I had with you, my life was enriched by meeting Auggie, and by seeing the love between father and son. Please know that my heart shares a small portion of your immense loss, and that my thoughts are with your family.
Dear Ilene, Chris, and Clio,
Thank you for sharing August with us through this blog. I hope you will find peace in all the loving memories of your son. Our hearts go out to your family, big hugs and many prayers.
My heart aches with you all at this time. You are very special people who have shown so much love and care to a special son and brother, August. I know he will be missed but his sweet smile and laughter will be a memory forever. Love and prayers.
My condolences on the loss of August. There is nothing like losing a child, even as you have given him to the rest of us.
I have been so inspired by August and his wonderful family. All are truly very special people who faced daily challenges we can’t imagine and handled them with grace and love. The neighborhood will miss seeing August’s smile as he toured the neighborhood enjoying the duck pond and the sights. August was so blessed to have such a wonderful family and yet each time I have read about him I realize he blessed his family with a ton of love and courage!
We sent all of our love and support to you Chris, Ilene and Clio. August was a lucky boy to land in such a family. May you find comfort in the sweet memories of your too short time together. Maggie has lost a kindred spirit. We all have.
I wish I could have met you. The way your father spoke of you in my English class is of such tenderness and love. When your name is mentioned, his face lights up. He spoke of the smiles that you would share with him first thing in the morning and how that always made his day. He also said despite the challenges you faced, that you always had such joy and happiness. I think we can all learn from your character. Now that you are freed of the bondage of human life, I hope that you laugh, run and be a free spirit as often as possible, just don’t forget to check in with us from time to time. Even those of us who never got to know you.
“The moon is up
And over one tree hill
We see the sun go down
In your eyes
You run like a river
On like a sea
You run like a river
Runs to the sea”
Hewson, Evans, Mullen, and Clayton. “One Tree Hill.” Rec. July 1986. One Tree Hill. U2. Brian Erno, 1988. Metro Lyrics. Universal Music Publishing Group. Web. 16 Oct. 2013.
I don’t know if you’ll remember me, but I was a student of yours at UNF a few years ago. I heard of the passing of your son and wanted to send my deepest sympathies to you, your wife, and your daughter.
I remember you bringing August to class on several occasions, one time lecturing on Christopher Marlowe with August perched in your lap. I truly enjoyed his presence in our classes, and learned much more about family than I did literature on those days.
I wish your family peace, comfort, and fond memories of your son.
With deepest sympathies,
August will always have a special place in my heart. I was so blessed to have him as a student. I will always remember his smile and laugh. He will be missed here at Mt. Herman. My love and prayers are with your family.
August will always have a special place in my heart. I was blessed to have him as a student. He will be missed here at Mt. Herman. Our love and prayers are with you all.
Thinking of all of you with love and gentle hugs.
Dear Ilene and family,
I am so sorry to hear about August’s passing. I wish I could have met him. Your family is such and inspiration and a wonderful expression of love and support. I am touched by your lives and devotion to August. Peace and blessings to all of you.
My utmost respect and praise for the courage and strength that you demonstrate as a mother. I have followed you from afar and commend the life that you have given to your family. You are a true matriarch. Rest in Peace, August.
Sleep well August……. No more pain, no more suffering, just an eternity of peace!
I’m so very sorry to hear about Auggie’s passing. I wish I had known him, and I am grateful to Chris for sharing so much of his life with us over the years. Remarkable child, remarkable family.
Chris, you don’t know me but I am Kelly Malone’s husband. I have followed this blog and your remarkable son. We are so filled with sorrow over your loss and wish you all peace at this hard time.
i am sending all of my love and lighting a candle for august tonight. love you all.
Auggie will be missed at MtHerman! Now he’s free. Know that all who were touched by this giant have a richer life! Thank you for sharing your precious son with us. Our thoughts and prayers are with you all.
I remember holding August when he was two and Chris and Ilene had just moved to Florida. Thank you for including me — and all of us who are far away — in the story of August’s life. He was such a fighter and such a hero. And he has the most amazing parents — and clearly from the photos — a supportive little sister. The loss of this young man will be great. It is important to remember how many lives he touched.
I am so sorry to hear of the passing of Auggie, He was such a sweet, happy boy of whom I had the pleasure to know if only so briefly. I will always remember his laughter when his daddy picked him up from DLC in the afternoon. I knew that was his favorite part of the day.
I’ll never forget his beautiful smile and wonderful laugh. Our hearts and prayers are with your family.
All of us at Mt. Herman ESC whose lives you were a part of will miss you so sweet August.
That beautiful smile and determination will always be remembered. Enjoy playing with all of the other little angels. Prayers to you Ilene, Chris and Clio.
I will so miss you my sweet Auggie. You brought such great joy to my days at Mt Herman! Finally you are free to run, jump and play.
Darling neighbors, our hearts are so full of this young man’s beauty and courage! You are much on our minds and heavy on our hearts right now. We will miss the sight of him taking walks in the neighborhood — he brightened our spirits! Love, Julie and Bill Mason
My heart aches even as an absent friend. I never met you, August, but I knew you because of two people who loved you with the same endlessness as the places you can go to now. Dude, fly. There is nothing to stop you. To infinity and beyond! Just as you are loved by your mom and dad and somehow, in the awesome and encircling wake of their love, by me too.
I’m so sorry. Sending love to all of you.
August was a gentle and joyful spirit and will be sorely missed. I enjoyed visiting with him on many occasions. He was blessed to have such a loving and supportive family. All of the Wolfson family is very sad today today upon hearing the news of his passing. Auggie touched many lives in his own way.His spirit will remain a part of ours forever.