Ian Brown’s son, Walker, was born with a vanishingly rare genetic disorder, Cardiofaciocutaenous Sydrome. Life raising a CFC-affected son is challenging to say the least.
Brown has written a series of essays for Canada’s The Globe and Mail entitled The Boy In the Moon, chronicling life with Walker. There’s video and pictures as well.
There’s a lot of stuff here, so it’s a time commitment, but in this season of goodwill, I urge you to read or watch at least some of it.
I’ve long felt that it’s inappropriate to judge one’s own suffering in relation to that of others, that such hierarchies of suffering do no one any good. Still, it’s important to maintain perspective, to understand that suffering isn’t all, that even in the deepest and darkest of nights, there are flashes of brilliance that make all the difference.
We’ll all continue to deal as best we can with our own individual Armageddons. Hopefully, stories like Walker’s will help us all meet our problems with grace and a sense of meaningfulness.
1 Comment
My daughter, Laura, is 41 years old. Through the years, doctors have diagnosed what she doesn’t have – but no clue to what she does have. A doctor in Denver, Colorado, gave me information about CFC several years ago and I have asked other doctors, through the years, if this could be what Laura has. They have all seemed reluctant to investigate that possibility.
Laura currently lives in a group home with six other women and is generally very happy, loving and caring, but she goes into unexplainable rages periodically which is so atypical of her usual behavior.
Just knowing what little I do about CFC and having reviewed the films on-line of other children is comforting as well as disturbing. I guess I will always regret that I didn’t push for further testing – although it may not have been available when she was a small child.
Thank you for this information.