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Hilarious, Joyful, Medically Complex. Food Allergies, Mito, CHD. Toddler, Tween, Teen. A new adventure every day.

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mitochondrial disease

A Wednesday Prayer

God of our Broken World and our Broken Bodies, Thank you for the breath of life, even and maybe especially breath that is breathed into us by non-sentient yet utterly life-supporting machines, giving peace we sorely lacked. Thank you for... Continue Reading →

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What Mitochondrial Disease Means

It means that every morning and many afternoons, I mix a cocktail of water, formula powder, Gatorade, and Miralax for my 13 year old that will be pumped into her stomach (or intestines, if her stomach isn't working). It means... Continue Reading →

What Is Dysautonomia?

To understand dysautonomia, first you have to understand what the "autonomic nervous system" is. The autonomic nervous system is the part of the nervous system that controls the internal organs (blood vessels, stomach, intestines, liver, kidneys, bladder, genitals, lungs, pupils,... Continue Reading →

Invisible Struggles

This is my daughter. She is a bright, hilarious kid who loves musical theatre, drawing, writing fan-fiction, online gaming, spending time with her friends, and texting/FaceTiming when she can't be with them. This is also my daughter. She needs a... Continue Reading →

A Tale of Two Diseases.

I am a mito mom and a heart mom. In many ways, being a mito mom prepared me well for being a heart mom; I knew how to speak medicalese, interact with doctors, survive a hospital stay, navigate scheduling, track ins and outs, stay on top of a med schedule, how to live one day at a time so fear does not consume you...so many things! The thing that surprised me was how comparatively easy (which is still NOT easy) it was, not because I was so prepared, but because the world UNDERSTANDS heart defects and they DO NOT understand mitochondrial diseases.

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