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
It took about four days after goniotomy surgery for Ruby to get back to being her usual happy-go-lucky self. She slept most of day one, napped and fussed a lot of day two, and started cracking a few "I'm still not feeling great but can't help myself" smiles on day three. By day four she… Continue reading Step by Step
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?
About a month ago Ryan, Ruby, and I went to Mt. Sinai for genetic counselling. This is a common step after an Aniridia diagnosis, because in some cases, Aniridia appears as part of a larger syndrome called WAGR. WAGR syndrome* is caused by a mutation on chromosome 11 -- several genes in this area are deleted. If we… Continue reading Genetic Results
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