On my way home from my evening Army Reserve committment (Tuesday nights 7-10pm) I listened to a replay of the day’s episode of CBC Q: Jian was interviewing Ian Brown about his book The Boy in the Moon. Brown and his wife, Johanna Schneller, are both Globe & Mail reporters and have a boy – Walker – who has a very rare genetic syndrome (cardio-facio-cutaneous syndrome, or CFC). Brown’s book is an autobiographical account of their experiences.
Listening to Brown talk, I was reminded of Jean Vanier’s Becoming Human. I read that book several years ago – and I will have to reread it. But perhaps first I will read Brown’s book.
The Globe & Mail has an extensive Special Report on Brown & Family – material that is likely reflected in The Boy in the Moon. I haven’t finished going through it.
I am afraid that J & I will have a child with some sort of special needs. Actually, I’m only afraid of some sort of mental/intellectual deficiency. I can handle blindness or deafness. But facing the possibily of raising a child with whom I could never reason, with whom I could never explain complex things, that scares me.
Brown understands this. He has faced this. He faced utter exhaustion and worry for years on end. He spoke about contemplating ending it all.
In the Globe report, he writes: “What is the value of a life like his — a life lived in the twilight…” – and I’ve asked myself, abstractly, the same question.
He also spoke about the greater understanding of existence, of humanity, that he gained from loving his son and spending time with him.
Having read Brown’s writing before, having seen Johanna on TV years back, this story became even more interesting. In some ways, I’m sure, they are a couple like J & I.
There is no witty conclusion in this blog post. No coming-to-terms-with. I am still afraid.