Early Years, Fun Stuff, Lifestyle

The Day of Hope Family Conference 2017

About a week and a half ago Elsie and I attended the Cystinosis Research Foundation's Day of Hope family conference and it was amazing! It's a yearly conference that the CRF holds in Newport Beach where families, doctors and researchers come together and get to know one another, share their wisdom, and learn about all of… Continue reading The Day of Hope Family Conference 2017

Early Years, Lifestyle

Take Care of Yourself as Well!

I've been thinking about writing a post like this for a long time now, but have never felt like I've truly embraced it. Right when Elsie was diagnosed I knew that I would have to keep myself healthy and happy if I wanted to really take care of her properly. You hear all the time about how… Continue reading Take Care of Yourself as Well!

Early Years

When It’s More Than Just Picky Eating

I recently wrote an essay for Tribe Magazine titled,"The Heartbreak of a Picky Eater." In it I talk about how difficult it is to have a child that refuses to eat no matter how hard you try, and feeling judged by others for their skinny appearance. But what I didn't talk about is when it's more than… Continue reading When It’s More Than Just Picky Eating

Early Years, Fun Stuff, Lifestyle

My Listen To Your Mother Experience

This post originally appeared on The Mighty I never had an interest in public speaking, in fact I avoided it as much as humanly possible. It always made me think of those times in high school when I had to present a project to the class. My heart beat so fast I could barely breathe… Continue reading My Listen To Your Mother Experience

Early Years, Lifestyle

Tips For Keeping Your Child Cool in the Heat

A lot of people with cystinosis struggle with thermoregulation; the ability to regulate body temperature. The cause of this is not entirely known. As with most symptoms related to cystinosis, some people experience them and others don't. A lot of parents have noted that their child doesn't seem able to sweat, while others state that… Continue reading Tips For Keeping Your Child Cool in the Heat

Early Years, Fun Stuff

Help Layla’s Wish Come True

On Sunday July 10th, The Children's Wish Foundation is hosting the 5th Annual Princess and Pirates Tea Party, right here in the Lower Mainland! The Princess & Pirates Tea Party raises funds for wish granting and is also an opportunity for children to welcome a little magic into their lives and let their creativity run wild! It includes a… Continue reading Help Layla’s Wish Come True

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