Monday, October 29, 2012


When we were in the hospital, we always has a basket of candy in Jameson's room.  Nurse Candy, I called it -although, I think the doctors indulged just as much.  It was Hubby's idea, from way back when J was first born and had an unexpected three-week NICU stay.  That boy liked to give us grey hairs from day one.  But that is a story for another day.  Hubby just started buying bags of chocolates to keep at Jameson's bedside to thank the nurses and staff for all they do.  It was a good strategy; I think J got loved on a lot at night when we couldn't be there. When he was first admitted at Children's we got candy as soon as we could think straight.  And for four months, we kept the PICU staff well-stocked with sweets.  We even brought two bags of candy to labor and delivery when Little Lady was born.  Candy is chocolate gratitude.

I can't buy a bag of candy now without thinking about my Jameson and being transported right back in that PICU room with the beeping machines and harsh lights and sterile smells.  Halloween is *awesome.*  

Two years ago in October, we had our first Care Conference when all J's docs met with us around a big table and said things no parent should ever hear.  They talked about filling out a DNR.  They asked us really hard questions, like "are we prolonging his life or prolonging his death?"  They told us they were running out of options on ways to keep him alive. We talked about risky treatment options and were told out of town family should come soon, just in case. 

It was one of the worst days of my life.

There we were, trying to process all of this information, trying to figure out how to see hope, trying to just stay afloat and breathe, all while carving pumpkins and playing in the leaves with Little Man, getting Halloween costumes for both of the boys...

I can't look at a costume without thinking about dressing Jameson up as a sleepy dinosaur.  I went to six different stores before I found a dino costume that would work with the edema and the chest tubes and the picc lines and the vent.  I spent a fortune on it.  He wore it for an hour or so.  We told him how cute he was.  We took loads of pictures with J and Little Man both dressed up.  All the nurses came in and "oohed" and "ahhed" over how adorable he was.  He was seriously the cutest dinosaur ever.  Ever.

October is hard.

September was hard, too, with the wholly unexpected diagnosis of a terminal disease, Jameson's birthday, ECMO.  November is also hard.  November is radiation.  All that traveling through the tunnels, all the angst over whether anything was working and the fear that he may not get better.  December wins, though.

But October is hard.

I have three pumpkins sitting on my front porch waiting to be carved.  One for each of my kids. Little Man picked them all out and he has plans for how each one will look when we light them on Halloween.  I love making things magical and happy for Little Man.  I love giving him traditions and memories.  But buying the candy and picking out just the right costume and carving the pumpkins is so heart-wrenching, too.  It gets a little harder to breathe again.  A little harder to be. 

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