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Our Life is…

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

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lifewithk

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 →

Thirteen

K is thirteen today. Can you believe that?! It seems almost impossible, but she grew up so much while she was 12, it also seems exactly right. Her 13th trip around the sun was full of immense challenges and hardship,... Continue Reading →

Sleeping Beauty and Her Winter Knight

I took K and two of her friends to see Sleeping Beauty and Her Winter Knight at TUTS last night and it was SO fun! I was really surprised by how much I enjoyed it. Before we get to that,... Continue Reading →

Some days surprise you…

This morning sucked. We had Josie's cardiology appointment which always causes someĀ  stress even though I know she *should* continue to be fine. On top of that, my map app miscalculated our leave time when I checked it last night... 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 →

It Devours! Book Signing with K

Tonight, I took K to see Jeffrey Cranor and Joseph Fink at a book signing of It Devours! at Murder By The Book in Houston. She looooooves Welcome to Nightvale, so it was a very big deal that she was... 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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