In scouring all of the posts this year I am struck by what a big year it has been for Esmé. 2014 has been filled with a lot of firsts, moves toward Esmé’s independence, and a general coming to terms with our world.

Here is my list of the most popular blog posts (based on number of views) on The Cute Syndrome Blog in 2014…each with a short summary and a line or two from the post. I hope you will take some time to look back over these posts–and our year. Readers, I hope that this list included some of your favorite posts of the year. Let me know if you have others you loved that didn’t make the list!

10: Tether
One of my personal favorite posts of the year starts the list off in tenth place…it is all about Esmé asserting her independence and my learning from her what that means for our connection:

“But, interestingly, the connection stretches, linking us through a vibrating gap. It is like those beautiful moments I’m sure we’ve all had, when two people are moving apart, but they both turn in the same moment and look back toward each other…as thought something has plucked a string tied between them?”

9: Back to School
This post was written in the midst of the back to school season, a visit to my high school in September prompted a visceral response in me about Esmé’s educational future:

“In my efforts to constantly focus on Esmé’s present–moment by moment, day by day–I suppose I am able to exist in a state of denial about her potential futures. Or, perhaps more precisely, I am able to avoid thinking about the futures that may be denied to her by virtue of her health, her intellectual potential, her physical ability, and her emotional stability.”

8: First Day of School
A post about our unexpected and perfectly imperfect first day of school in November:

“But we just went ahead and tried. Because, there never is a perfect time after all…in fact it really just seems that there are just decent tries at making a go of imperfect timing.”

7: The Red Store (aka Target)
Esmé has been a big fan of Target since she was a tiny baby. She loves seeing her favorite color, red, everywhere. As she has gotten older Target has become a place to explore and greet friends:

“Someday [Esmé] may make a fantastic (if remarkably quiet) politician. I’m pretty certain she is going to start kissing babies any day now.”

6. Slipping

This post came into being after I found some old videos of Esmé demonstrating some of the skills she had before her seizures became totally out of control:
“As much as I try to focus on her gains, on the positive, I find myself looking at kids her age doing all the things they do–running, dancing, singing–things I genuinely still hope Esmé will do, and I wonder what it would be like to not look at your child with fear. I wonder what it would be like to not worry it could all just go away tomorrow.”

There is a position I think most parents of children who are medically-fragile find themselves in with respect to helping other’s understand that their child’s status may never improve:

“Over these last years I have noticed an almost compulsive need in others to try to wrap Esmé’s situation up with a little bow…a need to know that she will get better…sometimes, even, that she is already “better.” And I often find myself in the position of bursting someone’s bubble and having to console them about Esmé’s prognosis…or just smiling and nodding while I’m told about some massage technique or magic potion or diet change or nail polish that saved some other kid.”

4: Under the Christmas Tree

Written earlier this week, a post about one of the brightest spots in our Christmas celebration this year:

“While my hope for Esmé is vague, at the same time it is so very real that it needs to be nurtured like another member of our family: Esmé’s twin sibling, hope. I constantly seek ways to grow our hope…seeking out stories of unusual but beautiful paths forward.”

3. Nigh Nigh Mum Mum

One night in June Esmé had an amazing verbal break-through after years a frustrating one step forward, one-step back dance:

“We have had breakthroughs here and there, but not much has stuck around. For awhile she would say “bub” for bubbles, but it stopped after a particularly difficult cluster of seizures. From about 9 months on she would say “Maman” with pretty clear intention…by 18 months she would call out to me in the morning “MAMAN MAMAN MAMAN.” But, in what I have felt is one of the hardest blows of all these years,  that stopped too at some point, that precious word stolen away by seizures.”

2. No, sorry, it’s just different.

A post that is all about a bizarre number of comparisons that were drawn between Esmé’s epilepsy and pets with seizures:

“This is how empathy can, at times, be so very crass and insensitive–diminishing something that is truly incomprehensible even to the people involved–into something digestible.”

And, drumroll please, the most popular post of the year was:

1. “You feed her what?”

This was by far the most popular post of the year…a post that was all about my frustration with the lack of understanding among many medical professionals a tube-fed blenderized diets:
“Instead I look her square in the face and say, deadpan: “We blend a mixture of Oreos, Doritos, and Happy Meals, that should be ok right?”
Because most three year olds have consumed those things. Mine hasn’t.”

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