The New Normal

I have to admit something.  Sometimes I play this weird little game with myself where I imagine what our life would have been like if we hadn't gotten that terrible diagnosis last month.  It plays out like the plot of one those movies where the main character gets to experience an alternative reality.  There are loads of them, but Sliding Doors especially comes to mind.  Did you ever see that one?  Basically Gwyneth Paltrow misses her subway train, and as a result, her entire life changes in just that one second.  The movie shows what would have happened if she had just caught that train.  Love, work, health...all are impacted.  Heck, that missed train even leads to a better haircut for Gwyneth!  It's actually a pretty good movie.  You should check it out. 

In my own Sliding Doors alternative universe, of course, Fionny does not get cancer.  The whole thing just never happened.  And we are simply living our normal life, enjoying our summer, as folks do.  Fionny going to day camp, maybe finally learning to swim, riding his Big Boy bike around the neighborhood.  Deaglan jamming out at Kindermusik and exploring the grounds at the pool with his new walking feet. And me?  Who knows, maybe actually training for that September half-marathon I signed up for last Spring.  Oops!

To be honest, Fionny has been feeling so good this past week that there are times when I completely forget that our kid is sick.  After all, he is up to his same old rascally tricks.  Running around the playground like nuts, using potty words ALL the time (seriously, what is it with little boys and the fascination with pee-pee and farts?), wrestling with Daddy on the floor, squeezing his brother a little too hard...check, check, check. And check.  Besides the bald head, you'd honestly never know that our kid is any different than any other kid. 

Fionny Potter -- wizard hat courtesy of Meghan, Colin and boys

And then clinic day comes as it did yesterday  And it all sudden it all comes back to me.   This is no ordinary summer.  Even though my Alternative Universe Casey is packing up for the pool, the Real Casey is packing up for the hospital.  Games, snacks, books, a blanket, a sweatshirt (it's cold in the hospital), I-Pad, DVD player, tons of movies...we got it all, folks. 

Yesterday Fionn had another minor surgery.  As I described before, it's a weekly occurrence.  He had a lumbar puncture (spinal tap) with an infusion of meds into his spine.  It required sedation yet again.  But this time could not have been more different than our traumatic experience last week.  This week we were able to have the procedure on the Oncology floor.  This made a world of difference.  The Oncology floor knows how to do it right, y'all. 

I'll set the scene for you.  When it was time for the procedure, Fionn got wheeled on his hospital bed back to the surgical room with his Mama by his side (already 100% improved from last week).  Everyone was cheerful and sweet.  Then we got to the surgical room.  The 4th floor surgery room is pretty awesome as surgical rooms go.  There is a massive mural on the wall which consists of a bunch of adorable animals at the beach.  Pigs wearing bikinis, giraffes playing beach volleyball, alligators surfing.  You get the drift.  It's adorable.

And, in the corner of the operating room, stood one of the Child Life specialists who also happens to be a fantastic musician.  Clarissa is her name.  As the nurses and doctors were getting all scrubbed in, we were enjoying the sound of Clarissa strumming on her guitar and singing.  She actually sang "What a Wonderful World" by Louis Armstrong which absolutely killed me.  Watching my baby get injected with anesthesia while listening to the poignant lyrics of that song...well, I dare any parents out there to keep their eyes dry.

I hear babies crying, I watch them grow
They'll learn much more than I'll ever know
And I think to myself what a wonderful world

Yep, I was a mess.  As Fionn's eyes closed, mine filled with tears.  I walked back to the hospital room, stared out the window and just allowed myself to feel sad for a bit.  There are times when I feel the unfairness of this whole thing for Fionn, and that was one of them.  Alternative Universe Fionn was undoubtedly playing on the playground with his buddies, causing trouble.  But this Fionn, our Fionn, was getting sedated for the millionth time in 6 weeks.  It's just not fair.  I hate that he is losing this time.  Missing out on his four-year-old summer.  It just sucks.

Don't misunderstand.  It's not that I want to pick some other kid to take Fionn's place on the hospital bed.  Definitely not.  I really don't have many thoughts of, "Why us?"  If anything I think, "Why anybody?" Especially a child.

After a hug from Clarissa, who is as kind as she is musical, I composed myself.  And before I knew it, Fionn was back in the room.  Not 30 minutes later, he was sitting up and asking for his peanut butter and jelly sandwich.  Oh, and his "banola bar" (read: granola bar).  And then 20 minutes later we were going up and down the moving walkways near the atrium like it was our job.  Heck, we had 20 minutes to kill while they readied our next prescription.  What else were we gonna do?

Watching Fionny run up and down the walkways, I realized that he was probably having as much fun at the hospital in that moment as he would have been having at any playground or pool.  Man, kids are so resilient.  So adaptable.  It's their parents who need to get with the program. 

In closing, please don't worry about Mr. Fionn.  He is doing a-okay.  His ANC was sky high yesterday -- in the 3000s which is totally normal.  All of his other counts looked great.  He is sailing through this so far, he really is.  I know we'll hit a speed bump at some point, but not yet.  Not yet.