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 →
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 →
Carole Amber is the author of the beautiful book, The Gift of the Ladybug, which she wrote to share her son TJ's story and communicate the experience of discovering that you are parenting a different kind of child than you... Continue Reading →
Mitochondrial Disease Awareness week is over, but at our house it is never really over and there are a few more things I wanted to share here that I posted about on Facebook last week. Mitochondrial Disease is an INVISIBLE... Continue Reading →
When K was born, she was seemingly healthy. With the exception of a couple of ER visits during her infancy, frequent illnesses, and slowness to reach milestones...we thought things were okay for most of her first year. By her first... Continue Reading →
I write one of these letters for K's new teacher every year so they know what they are getting into and then I pray they don't run for the hills! 😉 I try to be as open and honest as... Continue Reading →
Our Life is... 