Day 135: The Black Tie Event

Much of Cinderella’s story is about the wicked stepmother and her evil daughters.  But those nasty ladies get way too much airtime.

So much drama centered around their attempts to thwart Cinderella.  Oh the time taken by chatter about their malevolent ways.  It’s exhausting.  Too bad more focus isn’t given to Cinderella’s fairy godmother and other friends who lift her up, pamper her and teach her how to accept help even at the depths of her despair.

This week I had my own Cinderella story of sorts.

Nate’s cancer is the obvious villain of my story and I shall give it no more mention in this post.  Take that AML!

So let’s talk about the heroes.

But first, like all fairy tales, a little background …

Those of you who know Ted are keenly aware of his passion for presidential history and, in particular, his favorite: Number 16.

Years ago while dating I promised Ted we would visit at least one presidential site or attend an event per year.  I’m embarrassed to say that I may have even written this down on a piece of paper and wrapped it up as a Christmas gift.  Romantic right?

As what often happens with these type of “experience” gifts, I haven’t kept up.  Some years were good (Harry S. Truman Presidential Library, 2003; Abraham Lincoln Presidential Library, 2006; Lincoln bicentennial birthday celebration, 2009; Clinton Presidential Center, 2015).  As for the other years, our interests veered from history museums to children’s museums.

When I was thinking about what to get Ted for Valentine’s Day this year I fell back on our old theme and contemplated giving him a membership to the Lincoln Club of Delaware.   The gift included a black-tie event during which a prominent Lincoln scholar addresses the audience in celebration of President Lincoln’s birthday.  For Ted, there couldn’t be a better present.  Given my profession and interest in Lincoln, the membership would make me happy too.

There was just one problem. How would we be able to attend the gala with one child in the hospital and the other at home?  What about our outfits?  Where would we find time to shop?  Ted had not worn a tux since our wedding and I don’t have formal gowns gathering dust in the closet.  I spend my days in jeans and hadn’t had a hair cut since before Nate’s hospitalization.

Here’s where our Cinderella heroes come in.

When my friends heard about my gift idea for Ted they too became excited.  Each time I threw an obstacle in the way, they moved it.

“But I don’t have time to get a dress,”  I said.

“Rent the Runway!” they responded.

“But what about the kids? Who will watch them?” I pushed.

“Well you have more than one friend.  We’ve got this,”  they countered.

For the past three weeks my friends did everything they could to make sure Ted and I made it to our own ball.  They watched Nate so we could shop for a new tux.  They helped me pick out a fun dress and my dear friend, Patty, rented it for me on the fabulous Web site, Rent the Runway.  Another good friend, MC, loaned me earrings.  Friends watched Nate so that I could go and have my hair cut and styled and then took care of both boys for us for our evening out.

Before leaving for the gala Friday evening I took the arm of my husband who looked so dashing in his new tux.  I felt pretty spectacular too in the dazzling designer, emerald-sequined gown with trumpet hem.   We walked down the stairs of our home to see Sam wide-eyed and grinning ear to ear.

“Wow,” he said just before he left for his own fun evening out to bowl and eat pizza with his babysitter and her boyfriend.

On our way to the event, we stopped at the hospital to see MC, who was watching Nate.  How special we felt when she and Nate’s nurses made a big fuss over us.

“Do a prom pose!” they said, snapping pictures of us with the Nemours water tower in the background.

As for the night itself, we had such a great time.  We toasted President Lincoln.  We visited with friends and met new ones too.  We had great conversations and learned new things from the Club’s guest speaker.  We even stopped for a drink on the way home to rehash our evening out.

 

I realize I’m stretching it to try and connect Cinderella and Abraham Lincoln.  But they both did have gifts that weren’t initially appreciated by those around them.  Both also achieved a great liberation — one personal and one for a nation.  And for one night we felt free too, thanks to good friends who made it all happen and cheered us on along the way.

Day 127: Inspiration from the King of Maine

One word at a time.  That’s how Stephen King describes how he writes.

Now in the last hour of Nate’s 168-hour, continuous chemotherapy infusion, I am thinking about the past 167 hours.  Every single one of them.

heresnate.jpg
Here’s Nate

For the past seven days, I have often felt like we are in the middle of a Stephen King novel.  Dark moments.  Gruesome scenes.  Anger.  Tension.  Frustration.  Humor.  Exhaustion.  And one moment in particular that was just plain gross and oddly comic.

I am also thinking about the literary master’s approach to writing and how perfectly it sums up how Nate and I have survived this week.   One hour at a time.

Chemotherapy presents obvious darkness.  I see my child overcome by nausea.  I watch as the chemo drips from the bag, down the pole, into the pump and out to tubes that are connected to my son.  Plastic tubes that go straight to his heart via a central line threaded through his jugular vein.  I fear what’s to come when these drugs wipe out his immune system.

But with Nate there’s an added twist.  He’s a toddler on chemo.  A curious, active toddler who knows I am not a patient woman.  A toddler who loves to watch my mouth drop open when he’s mischievous and has mastered this sport.

Turn your head from Nate for a few minutes and you’ll find him with a wide grin across his face, his teeth chomping on the tubes that contain the toxic chemicals.  Sometimes he tries to use the tubes to zipline to the chemo pole.  He’s found these three-foot lines also make for good lassos and nooses.

“Na-ate!  WHAT are you doing,” I yell.  I panic.  He smiles.  I shoot up, rush over and take the tubes from his hands or his mouth.   At the same time, the sensitive chemo pump knows something’s not right and starts beeping loudly until nurses come to shut it off.  On and on this goes all day and night.

Nate’s behavior has earned him the nickname “Johnny” from the scene made famous by Jack Nicholson in The Shining.  Nate discovered there’s a gap in his bed that can’t be zipped while he’s on chemo.  He loves to peer out of the opening  with a big grin and then attempt to climb out onto the chemo pole — roughly a five foot drop to the floor.  “Na-ate,”  I’d yell before rushing over to prevent him from falling out just as the alarms began to beep.

I too earned a nickname from a Stephen King novel.  Carrie.  During a sleepless night, Nate threw up what seemed to be buckets of a chocolate Boost shake.  With such force he launched this vomit into the air causing it to land all over me and cover the floor.  What a scene Nate and I were to the nurses who rushed in responding to my call for help.  I stood dripping in the dark room.  My face stunned as the liquid fell down my hair, face and clothes.  Nate was equally soaked.  The Mickey Mouse on the glow-in-the-dark T-shirt I was wearing appeared decapitated as the chocolate-colored puke covered his face.  Once we finally went to bed, Nate and I slept in until noon the next day.

We’ve slept in a lot of days this past week, and it hasn’t been a total horror show.  We’ve managed to have fun.  Heck, getting through a long infusion of chemotherapy with only one episode of vomiting is actually an accomplishment.

My family also watched the Super Bowl from Nate’s room and I had some visits with great friends who made these hours pass more quickly.  I introduced Nate to “Finding Nemo” and he loves it.  We had some pretty great naps on the couch in our room.

But I am now thankful that as of this moment Hour 168 has passed.  Nate is free.  And for me, it’s End of Watch.