Early Years, Fun Stuff, Lifestyle

Tiny Superheroes

A few weeks ago I was browsing Instagram and stumbled across the TinySuperheroes feed and immediately got that excited feeling I get when I see every day people doing beautiful things for warrior children. There was picture after picture of cute and adorable kids all in superhero capes and their enormous smiles said it all. As… Continue reading Tiny Superheroes

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Early Years, Fun Stuff

Beads of Courage and Bravery Buddies

As much as I try to shine a positive light on living with cystinosis and strive to treat Elsie like any other little girl, there is no denying that cystinosis can be heavy. She has a lot of responsibility pressing on her little shoulders and a lot of unpleasant experiences to endure. I've spent more than… Continue reading Beads of Courage and Bravery Buddies

Fun Stuff, Lifestyle

Listen To Your Mother

I am so super excited to announce that I will be reading a special essay on my somewhat unique perspective of motherhood at the very first Canadian production of Listen To Your Mother! The inaugural Listen To Your Mother Vancouver show will be taking place on Saturday April 30th at 7:30pm at St James Community Square in Kitsilano… Continue reading Listen To Your Mother

Early Years, Lifestyle

Advice I Have For Parents New To Cystinosis

Shortly after Elsie was diagnosed with cystinosis I was lying awake in bed one night, my mind full of thoughts and me desperately trying to silence them, when an idea popped into my head. Maybe I should start a blog. I felt scared, alone and broken and hated the idea of anyone else feeling this… Continue reading Advice I Have For Parents New To Cystinosis

Lifestyle

We Should All Care About Rare

Last year I read this post from Taylor's Tale: Why I'm Still Fighting Rare Disease and was shocked by the staggering numbers of patients and issues involved with rare diseases. I have been wanting to do my own research and post something similar ever since and with Rare Disease Day coming up on February 29th… Continue reading We Should All Care About Rare