I was a lucky kid growing up, and I knew it. Some might have felt bad for me because my parents were divorced, as were their parents. But all I saw was the abundance of love this afforded me. While many of my friends only…
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If you ever meet my 5-year-old daughter, Austen, who has Dravet syndrome, there are two things you will come to know about her. First, she loves animals. You can find evidence of this in the fact that our dog, Milo, is her…
Last weekend, something happened that hasn’t happened since I became a parent over 13 years ago: I had an entire weekend to myself. There were no kids events to go to, no errands to run, and no husband or kids yelling at me or…
Because I started home-schooling my kids late last July, we are quickly approaching the end of our school year. Throughout the year, I have been riddled with fear about my capability of home-schooling three children and giving Austen, my 5-year-old with Dravet syndrome,…
From the outside looking in, the lives our family must seem chaotic. OK, our lives are chaotic. But isn’t that true for all parents with multiple children? The only things that make our lives different are a couple of diagnoses, a few seizures, and several medications. Strangers…
Today something rare happened in our home. My husband woke up before me and quietly ushered our 5-year-old daughter, Austen, into the living room so I could sleep in. I had just started to drift back into dreamland when I heard the door open again. Only this time,…
As of March 25, my husband and I are as immune as can be to COVID-19, as we’re two weeks past our second dose of the vaccine. It’s been a little over a year since the pandemic started, and what a…
I have two daughters. Each time the doctor told me I was having a girl, my heart skipped a beat in excitement. I never had a sister, and the thought of having a tiny human looking up to me brought both a sense of anticipation and…
For the past five years, I have been with my daughter Austen during every doctor’s appointment, blood draw, and medical test and procedure. Every time she’s walked through the doors of the doctor’s office or hospital, she’s been holding my hand. Every time she’s cried over…
I am often asked why I write about my life so much. Or if I get tired of sharing the daily ins and outs of our family life. I guess I see where people are coming from. In a life with neurotypical children, writing about your…
Recent Posts
- FDA, developer align on pivotal study of Dravet syndrome gene therapy ETX101
- Storing memories to teach future generations about our journey
- Vaccines recommended in Dravet, but managing fever risk is key
- My oldest daughter will always be a special needs sibling
- Discontinued Soticlestat ‘narrowly missed’ trial goal, data show