September 29, 2013Uncategorized

Alas, I have not been the best at keeping up this blog lately. I think about it regularly…about what I would like to share with my readers…about what has happened in the weeks since my last post. I just haven’t made it all come together. But here I am again. And as I write I … Read More


August 8, 2013Uncategorized 1 Comment

So today is my 31st birthday, which is lovely, of course. The last year has been sort of amazing/crazy/bizarre. Exactly one year ago today marked the escalation of Esmé’s seizures from something that was troubling to something that was completely and regularly petrifying. On August 8th of last year she was admitted to our local … Read More

In the middle of the Atlantic

July 30, 2013Uncategorized 3 Comments

I was driving last night while listening to my local public radio station. I caught part of TED talk and interview with a woman who rowed across the Atlantic in 103 days. I wasn’t in the car long, so I am certain I have missed all sorts of relevant details about this woman and her … Read More

On when I cannot write…

July 26, 2013Uncategorized 1 Comment

I cannot say how much good it has done me to have this space to express myself. More and more I realize that language has so much to do with how I make sense of my feelings and the world. Writing here has been tremendous for me to find my new balance, to vent, to … Read More

Age is just a number…

July 20, 2013Uncategorized

It has been awhile since this happened last, so I forgot how bizarrely agonizing it can be to watch someone try to guess my child’s age. This used to happen all the time. People are so fixated on how old babies are…but not just to ask, they want to be able to guess…perhaps to show … Read More

Mermaids and Their Friends

July 19, 2013Uncategorized

One of my fellow PCDH19 moms called our girls “mermaids” the other day…and it has been sticking with me. I really like to think of the girls with PCDH19 as mermaids. They all see to share an astounding love of water, something we noticed in Ez from a very early age. Since they are all … Read More

It builds character: On being left out

July 16, 2013Uncategorized

One of the painful realities of having a child like Esmé is thinking about her being left out by her peers. As I think I have said before, dear readers, I was a weird kid…and a weird young adult…and a weird teenager. (And…I am pretty sure I am a weird adult.) I was left out … Read More

A Limit

July 10, 2013Uncategorized 5 Comments

Looks like I hit a limit. I lost my cool today. Sometimes I want you, dear readers, to think I have it pretty well figured out…but really, I so don’t. Ezzy’s feeding tube pulled out today…this happens. With a child like Ezzy who squirms all the time and needs her extension hooked up most of … Read More

A little help

July 8, 2013Uncategorized 1 Comment

The longer I am on this journey, the more I realize how little in life is accomplished without the help of others. This is true in a very specific way in daily life for us…we need the help of our doctors, nurses, and therapists to keep Ez healthy and safe. I would not get through … Read More

The TinySuperheroes CUTE Troop

July 3, 2013Uncategorized

One of the things I can say that I could not have understood as I came to terms with the different parenting path we would be on was the tremendous people I would have the opportunity to meet along the way…one perfect example is Robyn Rosenberger. Several months back I sent an email to Robyn … Read More