Last weekend Esmé and her Papa had a few days all to themselves–while I traveled across the country for the American Epilepsy Society conference in Seattle. The week previous, when my husband was gone for several days, Ez asked for “Nay Nay” (her version of Papa since she cannot produce a “p” sound) repeatedly. So … Read More
No, sorry, it’s just different.
There is this really odd thing that has happened a bunch of times recently. I have had a number of people who, after hearing that my daughter has epilepsy, have told me–at moments lectured me–about their experience with their dog’s struggle with seizures (and occasionally other health issues). At first I was confused. Then I … Read More
Blueberry pie
All of my life my favorite holiday has been Thanksgiving. I suppose the heart of the love of this holiday comes from my Aunt Mary (my grandmother’s baby sister) who traditionally held the Thanksgiving gathering in my childhood. It was always a pot luck–so everyone arrived having prepared a few things, but no one was … Read More
Banana Sauce
Esmé is eating. With her mouth. In all honesty, my mind is completely blown. Reader, I’m not sure if you know that she has done this before. About a year after her feeding tube surgery she started taking about 1/4 of her calories orally. I can remember making plans for her tube to come out … Read More
Trade-off
I have been thinking a lot lately about the idea of trade-offs. It seems like there is this perception that somehow, some way, we can have it all…and, perhaps, not just that we can have it all–that we deserve it all. Becoming a mom to Esmé made it very clear, very quickly, that I could … Read More
November 9th
The entire month of November is Epilepsy Awareness Month, but today is a special day. November 9th is the second annual PCDH19 Epilepsy Awareness Day. To celebrate we are asking supporters to share photos of themselves with purple balloons (purple outfits, purple hair, purple anything works too!). You can share them on instagram by tagging … Read More
First Day of School
Today Ezzy did something that, in all honesty, I wasn’t sure she would ever do. Today Ez went to school. Now, I can imagine what you are thinking…some kind of first day of school activity–complete with a yellow school bus, a new outfit, and her hair properly done–like you see everyone posting in August and … Read More
Mitzvah
This weekend one of my cousins (I was about to say “little cousins” but I guess she is no longer little) celebrated her bat mitzvah. We had hoped to go as a family, but given Esmé’s recent hospital stay it just wasn’t feasible. So, I traveled with my mom and step-dad and left Ez behind … Read More
Anatomy of a hospital stay
This weekend we wound up spending some time in the hospital due to an infection we have been stuggling to manage at home. While sitting in the emergency room on Friday Ez was having a few moments of not wanting me to interact with her and we were just waiting on transport to a test, … Read More
Changes
It seems that we have successfully determined what was causing the most recent round of illness and discomfort: A very minor change in Esmé’s medications. This change was so minor that no one even mentioned that it might be significant in any way. About four weeks ago I went to pick up her anti-convulsant at … Read More