25 Days of Christmas

Every mom (and dad) of a child with special needs knows there are days that, just by their location on the calendar, are harder than others.  Diagnosis day is often one of those, certain anniversaries can be others.  Many of those days, for me, happen to fall at this time of year.  In the past, I've struggled to set aside the memories of darker days and tried to focus on the moment, with varying degrees of success.  So this year, I'm going to purposefully remember those days, and all the small blessings that came with them.  So, here's Story #1 on my own "25 Days of Christmas" Hallmark list…

Ice Cream in the ICU

Christmas time in the Pediatric ICU is exactly as depressing as you would imagine it could be.  There are ringing bells and colored lights, sure, but they're all attached to monitors that track every little breath and sigh and heartbeat, making sure that your small, fragile child is still silently sleeping. 

In December of 2001, exactly one week before Christmas, Jillian went into respiratory failure.  She was rushed to the hospital by ambulance, pale as new snow and in desperate need of a blood transfusion.  Within hours, she was on a ventilator and headed for emergency surgery.  She was not, we were told, going home anytime before the holiday.  I haven't yet found a "Baby's First Christmas" ornament that has a hospital crib, dialysis machine, or IV's on it…and yet, that's the one we would have needed.

Late one night, while Jillian lay quiet and still, surrounded by tubes that provided her with life-saving medicines I couldn't pronounce and nutrition I could no longer provide, I put my head down on her bed and cried.  I didn't dare leave her side, still terrified that she would disappear if I so much as walked down the hall, but I was just so tired and hungry.  After a moment, I felt a hand on my back, and someone asking, "Are you okay?"  It was Jillian's nurse, a young man who'd spent most of each night that week caring for her.  "Oh, I'm fine.  Just a little overwhelmed," I said.  He nodded, and went about checking all the numbers and lines on the machines that beeped and buzzed in her room. 

A little while later, I woke to someone tapping me on the shoulder.  I'd fallen asleep in the rocking chair.  It was Jillian's nurse, again, this time holding a giant plate of french fries and a large bowl of ice cream.  He smiled and said, "I know you haven't eaten anything all day.  The other nurses told me so.  And I know you don't eat at night, because I've been here.  So, what'll it be?  French fries or ice cream?"  And then he smiled, and said, "I figured you'd like chocolate the best."