Columns

When my daughter Avery was diagnosed with Dravet syndrome at just 10 months, it felt like life was constantly hanging in the balance. She had been having lengthy seizures that required medical intervention regularly, and I could only watch helplessly as Avery fought for her life every couple…

Today marks two years since my daughter Austen passed away from complications of Dravet syndrome. Two years since I last heard her voice or held her hand. Two years since I broke up a fight between her and her siblings, or had to go into their room to tell…

When my 10-year-old daughter, Avery, had her first seizure at 3 months old, I was all in. I made it my priority to find a solution. We didn’t yet know what was causing her to have seizures, so I fought with everything I had to figure out what was happening…

When my daughter Avery was diagnosed with Dravet syndrome at just 10 months old, I wondered what her life would look like. I knew it would be different from that of her peers, particularly as she grew older. Some of my greatest questions became: Will she have friends? Will…

I woke up and rolled over to the ordinary sight of my daughter, Avery, lying beside me. Her long, underweight body wrapped up in the blankets is an everyday reminder that our life and sleeping arrangement are unique. Most nights, it’s impossible to forget she is there. Her lanky legs…

Tomorrow would be Austen’s 11th birthday. When I found out I was pregnant with Austen, I wasn’t sure if I was going to have another home birth or not. I loved my home birth experience with Atlas in the fall of 2013, but we were stationed in Hawaii at the…

Eleven years ago, I brought new life into the world in one of my favorite months of the year, when things begin to warm and blossom. May 19, 2015, was one of the three best days of my life — the day my daughter Austen was born. The two other…

My entire world revolves around my children. As a special needs mom, I often lost my own identity in the fight to not only give my late daughter, Austen, a better life, but to keep her alive. But when Austen was about 2, I found myself at a point where…

I tend to second-guess myself. I’ve done it my entire life. But it got worse when I became a mom, and worse again when I became a mom to a special needs child. When your entire world is centered around keeping a child alive, it’s hard not to fixate on…

I grew up in a family that didn’t get rid of our old things. Items weren’t thrown away or sold at garage sales. Things that could be used were kept in rotation, and things that weren’t were packed away and stored. As a child, I remember hours spent looking at…