Posts tagged medically complex
Haunted

In the earliest days of our Google dumpster dives researching Adelaide’s symptoms one word kept coming up: neurodegenerative. According to the dictionary it means: resulting in or characterized by degeneration of the nervous system, especially the neurons in the brain. The most well known neurodegenerative diseases are Parkinson’s and Alzheimer’s: conditions that typically affect adults, and mature adults at that. So why was this word coming up in searches for information about our daughter?

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Mama bear

This stunning photo was taken by our dear friend and photographer, Megan Allen, as part of "a day in the life of Adelaide" photo series she shot for us last month. From the meds, to the syringes they're in, to our nurse delivering them, we rely on our insurance to cover all you see in this photo so that we can give Adelaide, and our family, the best quality of life possible. What would a full repeal of the ACA actually mean for our family? For millions of others? Please read this week's blog to understand why this mama bear is roaring and has no intention of stopping.

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Chatty Addy

As Adelaide grows more alert she is starting to communicate with us again. After months of near silence from her, I feel like a new mom getting to know my baby... except she's three and a legit medical mystery. During a recent hair drying sesh she let us know she was still herself by giving us some classic Miss A side eye... she's just much, much, louder.

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Seizing Life

Happy new year! Much like Adelaide’s birthday, a new year brings a mixed bag of feelings. Sure, I try and remain hopeful that this will be the year of a medical breakthrough for her but also just as prominent is the honest understanding that significant time with a special needs kiddo is going to come with serious challenges, stress and heartbreak. At times like this it is also important to remind myself that I can’t tie my personal feelings of success, productivity or fulfillment to Adelaide’s health. Which means my barometer for success and satisfaction has to come from somewhere else in my life. So, when CURE came to me last fall asking if I would host a podcast they were launching it did not take much consideration before I responded with a resounding, “YES!”

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How's Adelaide doing?

Three words, grammatically so simple, but connotatively so complicated. I mean, its weird, right, if someone doesn’t ask that when they see me? Don’t get me wrong, I am beyond grateful for everyone’s care and concern but the question is daunting. So much goes into calculating the answer: how much does the person really want to know? How well do they know the situation? What was the last update they received? What can I emotionally handle in response? And most importantly, how much time do we have? 

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