One year ago today, in a pool at a water park, as we were killing time waiting to ride the Polar Express, Edward had a seizure. I don’t want to use hyperbole and say it was the most terrifying one he’d ever had, and honestly after so many of them you do get, if not […]
Category Archives: Epilepsy
What We Talked About Yesterday At Boston Children’s Hospital
First off, thank you all for caring so much about our little family. Thank you for the messages, thoughts, ideas, prayers, and support. As you know if you are a regular reader of this page, we had a very rough fall. One of the most oft-suggested piece of advice during our time of trial was […]
Who Should You Blame When Your DNA is Faulty?
It is not an easy thing, getting genetic testing done on your DNA. For one thing it is very expensive, and insurance companies don’t always like to pay for it. And by “very expensive” I mean “more than I have made in the past decade.” So you don’t want to just have it done without […]
The One Thing I Want to Tell the People Judging Me in the Supermarket
Yesterday it was so bad that they called me and asked me to pick him up from school at lunch time. So I did. I put aside the rest of my day and the things I was supposed to be doing and I picked him up early from Kindergarten and we went out for lunch […]
Waking Nightmare
This morning, as I lay in bed waiting for my son to wake up, I was pulled suddenly back into a nightmare that almost stopped my heart. From a deep sleep, his whole body suddenly went rigid with a bed-shaking jerk that almost caused him to fall off the side of the bed. A huge, […]
The Future Just Ain’t What it Used to Be
Be Careful What You Blog About… I typed into Facebook on Saturday as I sat in the urgent care clinic waiting for my son to have his head stapled back together. The last post I had written espoused a theory that you should not tell your children about the fun things you had planned ahead […]
Curing Epilepsy With Mozart
You know, at this point we’ll try anything. We are currently on medication number seven. We have reduced screen time. We have monitored activity levels and body stress. We are working towards cutting all sugar out of our diets (except for when, I assume, I will sneak out in the middle of the night and […]
Lava Lamps and Disco Balls; Epilepsy and Sadness
I don’t want to write this post. I’ve spend all weekend and most of today trying to avoid it actually, but I don’t have a choice. They sent me a free lava lamp. Last week I never would have dreamed that I would be actively trying to forget one of my favorite days of the […]
A Short Note From the Pediatric Ward
Though I am not writing about health issues anymore for privacy’s sake, I would feel remiss if I did not give at least a brief update to you all at this point, you who have been so supportive in this frustrating journey of ours. We are on day three of our stay here in the […]
I Am a Special Needs Parent
I am not a special needs parent. That sounds ridiculous. Who says that? Who would ever want to be that? Doesn’t everyone’s child have their own special needs anyway? I mean mostly they are the same, but they’re all different too. And tons of kids have worse problems than mine! I just want my child […]