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Our Life is…

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

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 →

Let’s Talk About the AHCA [and the BCRA].

  Hi. My name is Kyla. I live in Texas. I am married to a great guy who works in IT and we have three kids, two of whom have medical needs well beyond the typical ear infections and viruses of childhood.... Continue Reading →

Who Lives, Who Dies, Who Tells Your Story

Today is International Women's Day and it has prompted me to put down in writing something that has been circling in my brain so often lately. I am not a person who cries weekly at This Is Us  (it has only gotten... Continue Reading →

Testify

Yesterday I went to the Capitol in Austin to testify in front of the Senate Finance Committee about proposed cuts to CHIP and Medicaid. I left home about 8am and got home at 10:30pm, and much of the time in... Continue Reading →

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