Since Esmé can’t tell us what she wants to dress up as for Halloween–and since she has rather stringent requirements for her costumes so that her sensory and physical needs can be met–every year I try to think about a person to dress Ez up as, someone that I feel fits Esmé’s personality and that somehow characterizes what we are experiencing with her. This means that I wind up dressing her up as exceptionally strong, courageous, and determined women from history…because the level of strength, courage, and determination I see in my daughter is what makes her who she is. So, in years previous, she’s been Amelia Earhart to celebrate her budding mobility in her gait trainer and Dr. Dian Fossey to celebrate her increasing connection to the world around her (and her love of the gorilla in Goodnight Gorilla).

This year has been one in which Esmé seems to be coming into her own. She is establishing ways to communicate her wants and desires. She is forming friendships. She is doing more–and more in her own way. I keep finding myself talking about her “blooming” as if she was a beautiful flower we’ve been waiting to see open up and show itself to the world.

That image of Esmé blooming has made me think, on a number of occasions, of the gorgeous flowers the artist Frida Kahlo wore so very often in her hair.

Since having Ez, Frida Kahlo (who has been my favorite artist for much of my life), has been on my mind quite a bit. Frida Kahlo, like Esmé, had a body that caused her a great deal of difficulty. She endured multiple surgeries, months bound to her bed, terrible pain, and a great number of other challenges that stemmed from a serious bus accident she was in when she was a young woman. She painted through and about her pain…using an adapted easel for the periods she was bed-bound. And she became one of the best known female painters, remembered for her emotional imagery and her striking self-portraits, which often included her beautiful hair-pieces and emphasized her facial hair.

To me Frida Kahlo has always been a symbol of how tremendous strength and determination can exist within a body that appears to be so very frail, of how pain and hardship can, when tended, blossom into something fierce and beautiful–something that shows everyone a different way of looking at the world.

And so, with that, I give you: Esmé as Frida Kahlo.


  • I had to comment after reading your blog. You a the most amazingly dignified, gracious and articulate person. Our daughter has a different diagnosis and a different battle but I can relate to so much of what you write , particularly your post about BD and your feelings on feeding. That could basically have been written by me – but not so well!! Love, respect and blessings to you and Esme xxx

  • Thank you Jess! Your comment brought tears to my eyes. You are why I write. I have always hoped that this blog would help other people in similar situations feel just a little bit less alone…and every time I press publish on a post I feel a little less alone. Every time I see a comment on here I feel much much less isolated. So thank you! How is your daughter doing?

  • Esme looks beautiful in her costume. Also I wanted to tell you something, I also got diagnosed with the same thing that Esme has a year or two ago. When I first got diagnosed I didn't really understand what it was and then I found your blog and it made me feel less isolated that there was someone else out there in the world that has what I have.

  • Hello Meredith! Thank you for posting. It must have been very challenging to deal with the new diagnosis. I assume it is the PCDH19 mutation? I am pleased to know that you have found some comfort and help here. It means so much to know that the blog was helpful to you in your own journey. I would very much like to know more about you and your experiences. Please do keep in touch!

  • It was much easier than the Amelia Earhart costume! I had a lot of fun gathering the pieces for this one though. And the hair was a huge battle. Ez doesn't like her hair touched at all!

  • Hi Hillary, my daughter is doing OK, thanks. Unfortunately we're on a year of chemo currently in we're halfway through so hanging on in there. We did BD through her PEG for 2 years and it was t best decision we ever made. So I totally understood what you said! Love to your beautiful little Frida

  • Yes it is the PCDH19 mutation. It is challenging to deal with another diagnosis. I have my own blog called that you can check out if you want to know more about me and my experiences with the disabilities that I have. To summarize myself I would say that I'm a completely atypical teenage girl with multiple disabilites,medical issues who was born at 27 weeks 2 days but the size of a 24 weeker (I was 1 pound and five ounces) who has an obsession with the hobbit/lord of the rings, dragons, video games,elves and other aspects of fantasy…much to my older brothers annoyance.

  • Hi Meredith! Thank you so much for telling me more about yourself! I have read through your blog a little bit and I am looking forward to reading more and learning more about you! I, too, felt like I was a pretty atypical teenage girl when I was a teenager 🙂 And, interestingly, we have another thing in common: a Lord of the Rings obsession!!

  • Oh, I am so sorry about the lengthy chemo treatments. It must be so difficult to go through…I was recently working on a piece in which I talked about Esmé's anticonvulsants–and how hard it is to give a drug that I am both grateful for and that I hate for what it does to her. I can only imagine that those feelings are magnified with chemo. BD has been huge for us as well. I'm often anxious about talking about it, because I want to be certain that other parents know about it as an option…but it isn't the right choice for every kid (just like formula wasn't the right choice for my kid).

  • Most people are at least a little atypical as teenagers, that's why their teenagers! My friends and I have a pretty big obsession with lord of the rings. We refuse to believe haldir died because he didn't die in the books and he's one of our favorite minor characters.

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