When I was in grade one, I wore costumes to school. One day I'd be a ballerina, the next, Michael Jackson. I LOVED playing dressing up. I don't remember the last day I wore a costume to class, but it happened, as expected. Somewhere between kindergarten and high school, I learned that people don't do… Continue reading Fitting In while Standing Out
She's great! Over the past month or so, she was sedated again to check her eye pressure, had house visits from her new vision coach Janet, and went for another ultrasound with our nephrology team. On top of that, her little personality is developing more and more each day. She's very happy and content, smiling and laughing… Continue reading How’s Ruby?
Normal is a word I don't really like to use, but it's hard to avoid. What is normal, anyway? The best definition I've heard is "a setting on your washing machine". Normal is an agreed upon narrative that we often aspire to, but that doesn't really exist. It makes us feel safe -- like we're on the right… Continue reading Our Normal
Today was the first day I was asked that question -- "Oh! Those glasses are so cute!!! Are they real?" This frequently asked question upsets a lot of parents of kids with glasses. Why would we put glasses on a baby who doesn't need them? I think the underlying frustration lies in the fact that some… Continue reading Are Those Glasses Real?
Our village is full of the coolest, most supportive individuals. We have the best parents, sisters, aunts, uncles, cousins and grandparents. We cherish our friends near and far, those we see every week and those we don't talk to or see for months. You all hold a special place in our hearts. Roo, Sar and I… Continue reading Our Village
When we talk about Ruby's Aniridia, there are times the conversation drifts to what Ruby can and can't do -- and, most of those times, the focus seems to drift to can't. The same seems to be true when I think about other kids with disabilities -- the focus staying on the DISability, not the ability. The way Ruby's… Continue reading Can She?
The word expectation gets overused on a daily basis, whether we're managing customer expectations, family expectations or living up to our own (sometimes unreasonable) personal expectations. I'm one, like many, who attempts to adhere to my own overly high standards. Generating a respectable income, managing family finances, cooking*, cleaning all while juggling first time parenting and squeezing… Continue reading Expectations