This past week our family suffered a tragic loss. Our rabbit, Susie Stew, whom we had adopted roughly 15 months earlier, passed away in her sleep. Between the time our neighbors had her (at least the entire three years we lived next to them) and the time we had her,…
Columns
I’m trying something new this summer: A slow, intentional way of life. I dream of mornings that aren’t rushed or chaotic, and evenings when I’m able to get the kids bathed and in bed without either of us breaking down in tears or shouting. I’m not delusional. I know my…
‘I’m Sorry, She Has Autism’
Autism is a secondary diagnosis for my 6-year-old daughter, Austen. Her primary diagnosis is Dravet syndrome, which causes her to have intractable epilepsy, weak muscle tone, and many other symptoms. I’m not sure if her autism is a stand-alone diagnosis, and if she would have it whether or…
A few weeks ago, my daughter Austen turned 6 years old. It was an exciting day that she had been looking forward to for months. She wanted a unicorn birthday party, complete with a unicorn cake, unicorn decor, and…
Happy 6th Birthday, Austen!
Something crazy is happening this week. Somehow my daughter Austen, the baby who must have only been born yesterday, is turning 6 years old. I can’t let myself believe it, yet I must. This little girl has been a surprise from the moment I found…
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…
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…
Recent Posts
- First look at ETX101 suggests early benefits for children with Dravet
- Grief comes in waves and reminds me of the start of a long journey
- Stoke readies to meet with FDA on 4 years of zorevunersen study data
- Continuing family traditions helps keep my daughter’s memory alive
- FDA awards RMAT designation to Dravet syndrome gene therapy
- A return to homeschooling reminds me how high my daughter soared
- COULD IMPROVED SEIZURE CONTROL HELP YOUR LOVED ONE DO MORE OF WHAT THEY LOVE?
- Zorevunersen shows long-lasting seizure control in Dravet patients
- A hospital visit brings back memories of a helping community
- A trip to Colorado brought back memories of my late daughter