Somehow another week slipped by. I have so many posts in my head, but for whatever reason, I am having a hard time getting them written and posted. It's not writer's block so much as it is writer's fatigue, or perhaps just laziness.
Fortunately, other writers are not suffering from the same malaise. Chris Gabbard has written a memoir about his son August who lived a life similar to Maggie's. August passed away at age 14 just a few months before Maggie. Chris, a college professor, wrote the book in a series of letter to his daughter, August's younger sister Clio, explaining all aspects of August's life. It is basically a series of love letters to and about his children written by a college professor. Hence, it is both wonderfully personal and scholarly at the same time. The first chapter/letter is available on line. It gives an overview of the entire book and leaves us wanting to turn the page and read more. You can read the first chapter here:
Chris sent it to me the other day asking if I minded that Maggie was mentioned in the dedication.
Honored is more like it.
Chris never met Maggie; in fact Chris and I never met until recently. I knew Chris' wife Ilene when August was little and they lived in San Francisco, but I never met Chris until last summer. I have corresponded with him for a few years now because of our similar circumstances. (You may remember posts about his earlier article A Life Beyond Reason, Maggie World: A life Beyond Reason)
Though no two experiences are the same, I know from my own life how very honest and true this memoir is. There were parts that made me teary and parts where I was vigorously nodding my head as I read. The part about weary parents being pulled into the disability rights movement was especially powerful to me:
The point is not that medicine should stop trying to save people. Rather, the point is that society has to rethink what it means to be dependent. Because your brother’s situation made this relatively new, society-wide development apparent to us, your mother and I embraced a political struggle we had never thought much about or wanted to join, namely, the disability rights movement. We had no choice. When we went home from Loma Prieta with a significantly impaired baby, we had little idea what lay before us. We wondered if our son would live, and, if he did, how he would get by, and we of course wondered as well how our family would cope. Looking for assurance and a place of comfort, we found that the campaigners for disability rights never questioned whether your brother’s life was worth living. For them, it simply was. Because of this, we felt most at home among them. As a matter of necessity, their struggle became ours.
Chris Gabbard writes so very eloquently about all of the aspects of raising a child with disabilities. He takes the whole subject to a lofty new level. And it inspires me to get back to writing.
Read the letter. It is long and delicious.
Here's the link again Twelve Things, Letter One.