The Journey to the Truth
— Meagan Earley

Today a mom asked me if I thought she should try Fintepla (fenfluramine) for her child. They had just started a new medication and weren’t seeing any results. I told her I thought it was worth the try, but not to take Austen’s good experience as proof…

I saw a meme a while back that explains what would happen if a special needs mom fell into a hole and could not get out. Many people come across her in this hole. A family member asks her if it is really as bad…

My parents have always been doting grandparents. Since my oldest daughter was born 12 years ago, it has felt like Target’s toy department exploded in my home. Almost anything my kids have wanted, they have gotten — within reason, of course. Addi was 2 when…

Austen was 8 months old when we adopted Milo. Her seizures had already started, but her diagnosis was still a good four months into the future. We were on a journey that seemed to be hazed in fog at that point, and Milo…

Like many families around the world, my family is home schooling this year. My degree might be in elementary education, but even so, I’m a bit intimidated by the idea of teaching three different grades simultaneously. Add in that one child is special needs, and there was some…

This week, an all-too-familiar scene greeted me when I logged onto Facebook: a teenage boy smiling at the camera without a care in the world, and a message above his photo letting me know of another warrior gone too soon. I can’t tell you how many…

Last week, my daughter Austen and I were doing our normal before-bed ritual. We cuddle up together on the couch, and she plays on my phone while I catch up on an episode of whatever I’m binge-watching at the time. This is our special time, now that she…

Being a special needs parent is the hardest job I’ve ever had. I constantly feel like I am not doing enough to help my child. I not only feel guilty every time something goes wrong, I also feel guilty when things go right. A few months ago, while…

The world of special needs parenting isn’t necessarily a club any of us signed up for. It’s one we were thrust into and had to accept to simply survive. When you think about it though, an initiation into the special needs siblings club might be even…

It was the summer of 2016, and I was trying my best to finish my grocery shopping with three kids in tow. My list was short and the store was slow that morning. It should have been a fast and easy trip. But the calming music dancing through…

When my daughter, Austen, first started seizing at 5 months old, we were told that it was probably just febrile seizures … even when she went into a status seizure two days later, had to have a code blue called, and was transferred to a bigger hospital with…

“It’s probably just a febrile seizure. It happens to one in 25 children, and 60% of those kids will never have another one. She’s going to be fine.” Those were the words spoken to me by the emergency room doctor, a…