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
Special Needs Child
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
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
Starting over
There is something that is just so spectacular about the beginners mind…starting something fresh with nothing but potential in front of you. I love looking at Esmé in this way, as a trembling and hopeful collection of potential. She doesn’t speak…yet. She doesn’t walk…yet. All things are still becoming. It is also one of the … Read More
She’s all better now, right?
Obviously I am pretty open on this blog about life with Esmé. If you read regularly I think it is pretty fair to say that you have a good idea of what I am like in real life…except here I can edit myself better (yeah, yeah, I know what you are thinking). On some level, since … Read More
Back to school
The other night I attended a networking event at my former highschool–Emma Willard School. A friend of mine was speaking, and I thought it might be fun to head over for a bit. I haven’t visited many times since I graduated in 2000, and I haven’t always been the best at keeping up with my … Read More