T minus One

It’s the day before our billionth transfusion and I am warming my back to the Colorado sun, sitting on a creek bank of river rock and fallen leaves, as Adahlia tosses stones into the water with a kerchunk or ploip, depending upon the size of the stone and the depth of the water.

I don’t really know if she needs a transfusion.  She didn’t want a finger prick test.  It’s been four weeks since her last transfusion.  In a choice between the sterile forced heat propelled from a hospital furnace or the living forced warmth of sunlight blasted miles across space, I hesitated only a second before exchanging hospital for creek.

She picks up a stick and dips it into the water, taps the surface a few times.  It’s her fishing pole, she informs me.  Then she wanders a bit down the creek from me.  After a few moments, I look over to see that she has taken off a shoe and a sock is walking back towards me, leaves crunching under her remaining shoe.  I’m betting her foot fell in.

But no.  When she hands it to me, the sock is dry.  She is just bringing her stuff to me to hold because she wants to puts her foot in the water.  I take off the other sock and shoe, roll up her jeans to just below her knees, and she hobbles carefully to the edge of the water.

I am glad to be hearing the sound of it.

We saw a little snake last time we were here.  He dove desperately into the creek and swam like mad for the other side.  It’s a good day for snakes, warm like it is, but we haven’t scared one yet.

I brought a piece of pumpkin bread we made together yesterday and now she is eating it.  Licking the aluminum foil.

Probably shouldn’t let her do that. But eh.  

It’s a rare peaceful moment prior to a transfusion.  Opposite of what one might think, she’s usually bat-shit crazy right about now, hours away from it, and anemic.  Last night, she was super hyper and difficult right up until she passed out. There was no dietary or obvious reason for it.  

But she’s always been like that.  She’s doesn’t get sleepy and complacent when she’s severely anemic.  She gets firey and manic.  When she was a baby, she would just start screaming and wouldn’t stop for hours (unless someone other than her dad and I was present.  She got quiet then).

No, it doesn’t make sense from a western biological or linear perspective.  But from a Chinese medicine or circular perspective it does make sense.  Yin (blood) is necessary to root or hold the spirit (yang).  It’s the container.  Without adequate container, her spirit is an untethered fire and acts as such, flitting and flaring.  

And from a psychological perspective, it makes sense too. When anemic, she feels rotten and she wants us to do something about it, but doesn’t know what.  She doesn’t feel safe around non-family, so she pulls inward.  But she feels safe when it’s just us, so she screams and refuses to listen and even bites and pinches, letting us know something is wrong.  But there is nothing we can give her, nothing we can do to help.

I brought some books and tea with us, too.  Tomorrow will be sad and painful and demanding.  Today there is incredible tension, like the night before an anticipated army attack, or the day before a board exam.  At this point, you’re either prepared or you’re not.  You don’t know how you’ll perform.  When the grenades and flares start flying, you’re just going to have to put your rifle to your cheek and scan for targets.

Last transfusion, I didn’t perform to my expectation.  I started tearing up as I sang Adahlia Twinkle Twinkle Little Star, as the anesthesiologist put her to sleep for her MRI.  

But, I’ve decided to cut myself some slack due to poor tactical planning.  I should have never attempted to sing that song.  I should’ve chosen something different.  For example, last March, for Adahlia’s first MRI, I had sung The Wheels on the Bus.  That  was tough, but I managed to smile through the entire song, not bursting into tears until after she passed out.  

But it’s impossible not to cry if you’re singing TTLS to your kiddo as he or she is put under.  It might seem an appropriate selection, but it’s just terrible.  If you do it anyway, and your goal is to help your child feel that everything is ok because you’re ok while she is being administered gas, you are setting yourself up for failure.

Maybe tuck that away somewhere.

I’m used to this by now, but I still don’t like it.  Even professional concert pianists and ball players get nerves before the show, the game.

And I have no idea what level of challenge I will face tomorrow.  Will she need one poke for the IV?  Will she cry and scream and resist?  How about my talk with her primary hematologist?  It is always like chess.

Like many professional performers, I don’t particularly want to talk to anyone right now.  But I do want to sit by a creek with my back to the sun. To let the water rush past with its wisdom while I soak up the sun’s strength.   

This too will pass, these emotions will pass, this stress will pass, the creek says.  Let me wash and tumble this all away.

Here, the sun says, take my warmth.  Absorb it and be strong. 

And I’m struck by an amusing and serious truth with many layers of meaning:

If it weren’t for Nature, I’d be dead by now.

My daughter wants us to go down the stream to where the water runs over rocks, creating rapids.

“Let’s go to the deep, deep part, the deep, deep part,” she says.

Indeed.