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 →
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 →
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 →
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.
I posted this yesterday and it struck me that "normal" people don't know what half of this stuff means! So I've provided some explanations below. I hope it helps you understand K a little bit better. Lesions: K had lesions... Continue Reading →
K has been struggling quite a bit lately and we are feeling a bit helpless. She reports symptoms to me so often and all I can really say is, "Okay, I'll make a note of it." and send her to... Continue Reading →
I need to write an update about K, but I keep starting and deleting it. Things are kind of exhausting right now and detailing it feels exhausting, too. If you haven't known us a long time, you probably don't know... Continue Reading →
Many new people have entered our lives during the medically-stable period in K's life. I know that a lot of the things I say or things that happen can be confusing for people who don't have a frame of reference... Continue Reading →
Humans are capable of amazing things. One of those amazing things is the ability to adjust to just about any set of circumstances in time, and because of this I've found that eventually most things become normal for us no matter how... Continue Reading →
Our Life is... 