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Our Life is…

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

About That Healthcare Executive Order…

So here we are after MONTHS of fighting for our literal lives and beating back multiple assaults on our access to healthcare, and the President has sidestepped the appropriate legislative channels and signed an executive order that will hugely destabilize our healthcare markets

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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.

An (updated) Visual Guide to K: What Does It All Mean?

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 →

Help!

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 →

Dear Senators,

I am writing to you as a mother who fears for her child's life at this moment in time, because you have the power to help preserve that life. My child is on a Home and Community Based Services (HCBS)... Continue Reading →

The Monster Returns…

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 →

Viruses, ketones, and K. Oh my!

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 →

Back in the Ocean

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 →

I know Jesus said to help the needy, but…

If you've ever read the Gospels, you probably have noticed that Jesus was BIG on helping those who have needs (physical, financial, spiritual, ect.). If you've read the Bible in general, you'd know that there are clear instructions to put... Continue Reading →

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