Ian Brown is a feature writer for Toronto's The Globe and Mail newspaper, and the father of a child with special needs. He was interviewed on NPR recently.
Brown has spent years trying to learn about his son's condition, a rare genetic mutation that affects only 300 people in the world. He writes about his journey raising Walker — and his mission to find the answers to both medical and philosophical questions — in his new memoir, The Boy in the Moon.
"The hard part is trying to answer the questions Walker raises in my mind every time I pick him up," he writes. "What is the value of a life like his — a life lived in the twilight and often in pain? What is the cost of his life to those around him?"
Ian Brown is brutally honest about life with a disabled child and takes a dim view of some parents in the same position who choose to paint a distorted picture of their own experiences:
"You see it in political life every day. You often hear from these people something that drives me mad. It's one of the reasons I didn't want to write a book like this, and one of the reasons it took me so long to write the book was because I didn't want to write a 'misery memoir.' These misery memoirs, in addition to being badly written, you get the same sentimentality all the time: these are very special children, given to very special parents, by a very special God. The God thing is not often there, but it's often tacked on. And I think to myself, if Walker is God's idea of a gift, then God needs to read Emily Post. Because a jar of jam or a bottle of wine would have been fine, thank you very much."
I wonder if Ian Brown could be referring to the ridiculous letter "God" wrote to Sarah Palin's family and friends, featured in Going Rogue:
I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be the happy and healthy, and I've answered them because I only want the best for you!
I heard your heart when you hinted that another boy would fit best into the Palin family, to round it out and complete that starting five line-up. Though another girl would be so nice, you didn't think you could ask for what you really wanted, but I knew so I gave you a boy.
Then, I put the idea in your hearts that his name should be "Trig," because it's so fitting, with two Norse meanings: "True and "Brave Victory" ...
Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for. At first the news seemed unreal and sad and confusing. But I gave Trig's mom and dad lots of time to think about it because they needed to understand that everything will be OK. ...
This new person in your life can help everyone put things in perspective and bind {you} together and get everyone focused on what really matters. The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect."...
Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal mom's heart just like Track, Bristol, Willow, and Piper did. And Trig will be the cuddly, innocent dependent little brother that his siblings have been waiting for... in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.
Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed-up world you live in down there on earth. Trig is no different, except he has an extra chromosome. Doctors call it "Down syndrome," and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! ...
Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are caring and are interested in this new little Alaskan. ... Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. ...
Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.
I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "my ways are not your ways, my thoughts are not your thoughts... for as heavens are higher than earth, my ways are higher than yours!"
I wrote that all down for you in the Good Book! Look it up! You claim that you believe me - now it's time to live out that belief!
Trig can't wait to meet you. I'm giving you ONLY THE BEST!
Love, Trig's Creator, Your Heavenly Father
*****
Available on Amazon
[The comments on the article linked above became very heated. An exchange between a woman who calls abortion "murder" and the mother of an 18-year-old disabled daughter is particularly interesting.]
H/T to Ferry Fey, who posted the link to the article.
