It has been three years.

It has been three years since the worst day of my life…since the day I barely remember…the day we almost lost Esmé.

That day is still a blur to me. I knew so little about the medical world. Honestly I knew so little about Esmé. She was little and gray and floppy, but I hadn’t had a baby before… It is funny to think about the meek person I was on the phone with our first pediatrician’s office. This loud, pushy medical maman I have become barely recognizes that person.

I know I have told you all the story before. I won’t tell it again. Honestly I don’t know if I can. You can read it here, if you like. 

The truth is I spend these days around April 29th in a state of perpetual panic. Everything makes me feel frightened and unsettled. Ezzy having a breath-holding spell in the back of the car followed by two seizures yesterday certainly did not ease my nerves. I was such a wreck that by the time I called the hospital to see about timing for our annual visit to thank them for helping her I couldn’t get the question out to the doctor’s secretary without sobbing.

And as I sit here, I find it so hard to even organize my thoughts to write something coherent.

In some ways it feels like the anniversary of the death of an innocent part of myself…the person who thought having a little girl would be all dresses and tea parties and Disney movies…not hospitals and aspiration and feeding tubes and seizures…and near death experiences.

More than that I feel like it is the anniversary of Esmé’s true introduction to how unfair and painful life can be. I can still see her face looking up at me after being traumatically intubated (she was extremely difficult to intubate) on no pain meds (there wasn’t time) with a look I have now seen too many times to count…one I feel was asking my why this was happening…asking how can this be right that her mother couldn’t fix this with love and snuggling. And, honestly, that part makes me plain-old furious that she had to know these things at a time that her worst fear should have been be having to wait 10 minutes for her mommy to get ready to feed her…not her lungs filling up with that food. And before you tell me she doesn’t remember, or that pain is different for infants, keep in mind that three years later we still deal with oral defensiveness and fear that all started that day.

But it is also something else. Something more positive. Today is the anniversary of the day Esmé didn’t die. Much as it seemed like she was going to when they pushed us down the hall to the family waiting room with her O2 dropping rapidly…Esmé didn’t die. Last year in an effort to celebrate this aspect of the anniversary, I announced that we were forming The Cute Syndrome Foundation…you can hear some of the hope in my post from this time last year and this one as well.

I find myself sitting here today wondering whether this mixture of emotions I feel this time of year will ever relent. I suppose I have to just let myself feel it, since it is so rare that I do allow myself that luxury in the “it’s ok to spend two days in tears” kind of way.

In my heart I know that this day is the reminder of more blessings than anything–even if the blessings were unexpected. This way not the path I expected to be on three years and one day ago. But I couldn’t be here without what happened that day and every day after.

This storm changed me forever.

And on some level I know I wouldn’t go back, even if I could.


  • I follow your posts, your blog and think of you and your family often. It is so clear that Esme is surrounded by many, many people who love her and cherish her. She is precious. Moms, dads, grandparents, relatives and friends are allowed any and all emotions that go along with difficult as well as happy times. I appreciate your writing.

  • What that little girl has gone through is heroic and thought-provoking. She comes from a long line of strong women, who love her and nurture her and fight for her and with her. The power of love, hope and faith helped build the Cute Syndrome Foundation. Our best wishes are with you.

    Val Kerker

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