If you were sent here by Scary Mommy, welcome! (All, uh, thousands of you! I’m like 70% sure the blog won’t break from all the traffic, so, please, get comfortable!) Allow me to make some introductions. This is my daughter, Esmé, a.k.a. The Cute. I’m Hillary, Esmé’s Maman (that’s French for Mom).
Here are a few things you should know about me, Esmé, The Cute Syndrome Blog.
1. My daughter Esmé, a.k.a The Cute, is the inspiration for this blog. She is five and basically the best human I know. She is not the child I imagined parenting, but only because I wasn’t inspired enough to envision her.
2. In addition to writing here about Esmé, I have another blog called Mom, Imperfectly where I write about some of my hobbies–including inventing cocktails that pair well with existential crisis, boxing, and documenting Esmé’s wardrobe choices.
3. One time I dressed up a $8000 piece of Esmé’s medical equipment up like a gorilla so that Esmé could be Dr. Dian Fossey for Halloween. Dressing Esmé up as strong historical figures is a bit of family tradition–check out Esmé’s primer on costumes.
4. Last year I wrote two medical memoirs about Esmé, published by Ponies + Horses Books. The first book, Around and Into the Unknown is all about the mysterious journey into Esmé’s genes. The second book, Whoosh, tells the story of Esmé’s cardiac arrest.
5. I write about my daughter for all kinds of reasons…not the least of which is maintaining my sanity…but mostly? Mostly I write about Esmé because I want to share her with all of you. I want to help build a world that is better prepared for her–a world that better understands her, her needs, and needs of other children like her. I write for the person who is going to find themselves around a child like Esmé–whether that baby is handed to them in the delivery room, or is the child of their friend or loved one, or is a classmate their own kids, or just another child in line in a public restroom. And, here’s the thing: That’s all of us.
Thanks for stopping by to check us out. We are so pleased to meet you! Feel free to explore and don’t forget to check out some of my favorite posts.
Alright, I’m off to stare at my analytics some more…
I checked out Esme's costume–adorable and so well done!! Great idea!
Thanks Christine! It is so much fun to plan her costumes each year! I've started thinking about who she'll be next Halloween–but I'm not sure yet!
I just wanted to tell you, if you've been wondering who's been reading your entire blog, every single post – well, that's me. (No, I'm not a creepy stalker, it's just when I really like a blog I like to start from the beginning.)
So I'm not a stalker, but definitely a fan. Your blog is well-written and insightful. It is funny and moving. It is inspiring and comforting.
You see, lately I've been looking for blogs like yours. Blogs about life and how it didn't turn out like we'd planned. Because that's where I am right now. A few months ago i almost lost my baby girl to meningitis/encephalitis. She survived, but suffered brain damage. She has cortical visual impairment, epilepsy is spastic/has hypertonia. And we have absolutely no idea what the future brings. Will she make (near) full recovery? She might. Will she depend on help and care for the rest of her life? She might. Coming to terms with all these uncertanties is hard, but your blog has helped me a bit on the way towards acceptance. Thank you.
(Apologies for the long comment!)
Hello Helle! I am so sorry for what you've been going through with you daughter. It is terrifying to be in the place you are in. Absolutely Earth-shatteringly terrifying. I am sorry that you know the things you know about how off the rails life can get, sweet pea.
I read your words and can just feel those early days all over again. It means the world to me to know that anything I have written has reached someone else who is worrying about their child's future and doing their damnedest to move through these uncertainties. I can tell you that slowly, slowly things will get easier as you find some certainties in it all…whatever that may be. The ground shifts, and yet we find new footing.
Thank you so much for the comment–especially for it's length and honesty. And thank you for reading every post and for telling me that they mean something to you. This, right here, is exactly why I write.
I wish you and your daughter love and peace and blessings.
Thank you for your kind words. I sometimes wish I could jump a year or two ahead in time, because I know one way or the other, it will get easier.
It's been really exciting to read about all the progress Esmé has been making recently!
May I ask your daughter's name? How old is she?
Her name is Aurora (pet name: Rora). She was 5 months old when she got sick, and she'll be 10 months later in June. She is the size of a six-month-old and her gross motor skills are pretty much those of a newborn. But she eats and smiles and babbles!
Rora! That is a beautiful name! She sounds like a darling girl!