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

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

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

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

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

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

Life with Esmé is nothing if not filled with surprises. Sometimes they are rough…like the phone call I got two nights ago while my darling hubby and I were out on our first date in maybe six months. The call was basically that she was seizing, blue, not breathing and that 911 was being called. … Read More

I haven’t written much lately. I assure you there are several posts brewing in my head. Until I get those out into the world…I leave you with this photo of the great joy we get to see on Ezzy’s face.

Over the last few years I have had some pretty frustrating experiences in with Ez Target. It is, more likely than not, because we spend an embarrassing amount of time there…but it also seems that we attract more attention there for some reason. I try to be patient with the little old ladies who want … Read More

I have been needing a break for awhile. The last six months two and a half years have been really rough. Since Ezzy was born 29 months ago I have spent three nights away from her. I was away for two to travel for a conference I hoped would help land me a job (that I … Read More