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Thursday, May 1, 2014
Some publications are memoirs, some are narratives, some are fiction. It is rare that a book of poetry resonates with my soul. To touch the deepest parts of my self, the poetry of Eric Fischer, probes the issues of very extreme caregiving, of life with a severely disabled son who lives with Ohtahara Syndrome, of introspective views of other very medically compromised children, of living a worthy life and of death, a topic we all avoid.
Eric Fischer, whom I consider a dear friend, lives in Israel with his son Segev. Caring for Segev, who is a very severely disabled 16 year old, has shaped his life and his view of reality and of the potential of human existence, the sheer pure dignity of life in the world of disability.
This book of poetry which spans nearly 20 years of writing and reflection probes darkness, doubt, living a worthy life and death. There is an absence of the superficial and the overwhelming presence of the depths of human experience and understanding.
For all people, for parents who care intensely for severely disabled and medically fragile children, for those who face the death of their children at any moment, for those who confront the passage of parents, for those who struggle with these battles alone...this book of poetry is a MUST read for you. You will be able to see the world of disability from a purer perspective and understand the human spirit confronting the unimaginable. You MUST read this book of poetry...and read it slowly, read it as a daily meditation in your life. You will leave having learned and experienced.
It is an honor to call Eric a friend. It has been an honor to read his collection of poetry and meditate on each piece. It is a honor to reread the collection. Of course, the book lives and embodies spirit and any profits contribute to Segev's care. Please buy a copy of the book using the above link.
Eric also blogs at: iamabrokenmanyoucantbreakme.blogspot.com/...another place to visit and absorb a real story of living a worthy life.
Tuesday, January 21, 2014
|Adam, January 21, 2014|
At the Falmouth Hospital ICU, alone with my love, my life purpose. Adam developed bronchial pneumonia quite suddenly. After admission, his chest was heaving so unnaturally, terror racked his face...every breathe is a struggle to live. He was in fear, I was in fear. Fear is a poor word, terror better describes the feeling. Terror is accompanied by tears, many tears, tears shed alone.
His infection compounded by his cellular memory of drowning is more than the human spirit should endure. But, he is a warrior, a fighter with his mother and father by his side every minute. The pulmonologist placed him on a vent and intubated him to allow for healing and rest. Waiting to grow a culture to determine the right antibiotic. He's given five antibiotics and they need to reduce them.
Sharon and I live in his room, sleep in his room, not from worry, but so that he never feels aloneness...the greatest fear that anyone can experience. He will be ok
My greatest desire is to be surrounded by physical presence of support so that I can be strong although weakness is to be accepted and overcome. Family, except for my seven month pregnant loving daughter and her husband, have never offered to give us relief and sit with Adam I have had the love of hundreds Facebook friends, all of who have severely disabled kids sending healing energy and light. I am wrapped in this love of my community. A few neighbors brought food and compassion...without asking "what can I do?"...they just did because it was right.
My belief is never to ask terrified, exhausted parents "what can I do?" Just do it. Come here, family, and wrap us in the tenderness of your strength. And, a phone call or an excuse, is woefully insufficient...just do what is good and worthy. Come and wrap us with your love through your presence...show Adam your love in his time of terror and fight. It requires time and courage, but all of our time is limited and courage springs from deep within...all of us want to live worthy lives, good lives...it is the meaning of life: never allowing our disabled kids to feel fear, to feel alone but only to feel love which sustains life. This is not a time for regret, but a time to learn to be the best we can.
Adam told his clairvoyant many years ago, at a time when we performed ritual to have him keep his spirit in his body, that "Love means being here, even when you don't have to..."; I spoke the same words at Aimee's wedding. Be here!
To my Facebook community and many of you I have not met personally, I love you...you have taken time to express words of love, hope, presence, tenderness and with you I no longer feel alone. We will survive and so will our warrior son....My joy, my daughter Aimee had offered to do anything...to take Ollie, who can be a pain in the ass; to sit overnight with Adam in ICU, despite she is a corporate tax manager in the midst of a busy season and seven months pregnant. It take no skill to recognize true love. She has learned that "Love means being here, even when you don't have to." It such a simple formula to life a worthy life...it's all that is necessary to live a worthy life.
Sorry for rambling, but the brain simply rambles...
Because of indifference, one dies before one actually dies.