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Tuesday, December 2, 2014

Christmas Kisses


Jillian’s skin was warm, her face flushed, and the sound of her cough was enough to have my nerves on edge.  I’d bundled her up and trudged over to see her kidney doctor (I’ll call him Dr. Kelly). Standing in his office, I held her close and hoped he would say it was a cold, or an ear infection – anything but what my mommy-instincts were telling me it was.  But he sat down on the little round stool, looked at me, and said, “I think she has pneumonia, and she’s going to need to go to the hospital.”  It was Dec. 23rd, 2002.

Since her first Christmas, the one spent in the ICU, Jillian had received her kidney transplant, and while there had been plenty of bumps in the road, she had been mostly doing well.  I was excited to spend Christmas at home, and Kate and Tom were eager to have a “normal” Christmas, too.  The presents were wrapped and tucked away in closets, the stockings were hung by the chimney, and I had every intention of making up for lost time.

“She’s going to be home for Christmas, though, right? Please don’t make me have to tell them she won’t be home for Christmas,” I pleaded.  But wishing doesn’t make it so, and Dr. Kelly – then and now, one of the most compassionate and dedicated I’ve ever met – knew that my deepest, darkest fear was not only that she’d be sick for Christmas, but that she’d need the ventilator, again.  I was, in a word, terrified. 

By the afternoon, Jillian was in the hospital, feverish and needing extra oxygen to keep her breathing steady.  I watched as all the not-quite-too-sick kids were discharged home for the holiday, and I listened to the nurses chatting about how the snow was falling outside.  I talked on the phone with Ken, and my parents, and tried to figure out whether or not to bring the gifts to the hospital.  Mostly, though, I sat with Jillian and tried not to stare at the wavy lines of the machine that monitored her breathing, tried to ignore the fact that steps away from this room was the place we’d spent last Christmas, tried to smile at all the nurses stopping by to visit. 

I heard a knock on the door, and a petite, smiling woman with two children stood in the doorway.  “Hi, I’m Dr. Kelly’s wife, and these are two of our children.  We’re so sorry Jillian has to be in the hospital again this year, and we wanted to stop by and give you these.  We hope it helps, a little.”  She stepped into the room, holding four brightly-decorated gift bags. One for Jillian, one for each of the older kids, and one for me.  The children’s bags had toys, and crayons, and Christmas coloring books, and I started to cry a little.  Then I opened up the bag for me, and simply started to laugh.

Dr. Kelly had been with Jillian for nearly her whole life, and he inevitably saw me at my worst when she was in the hospital.  He knew I pretended to read “real” books while I was actually reading trashy romance novels.  He knew I owned a pair of slippers that looked like cows.  And he knew I couldn’t survive 24 hours in the hospital without chocolate.  And so, nestled in tissue paper in the bottom of the gift bag, was a supply of Hershey’s kisses, with a note that said, “For Mom”.  

Monday, December 1, 2014

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."