Parent's POV

Our Normal

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

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Parent's POV

Our Village

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

Ruby Update

Genetic Results

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

Parent's POV

Expectations

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