Wednesday, October 15, 2014


Can we listen to Jean Val Jean's story?

It's 6:20 in the morning and I'm driving Bean to Philly for her cardiac checkup.  Once awake, she refuses on principle to sleep in the car so we talk about the night sky, all the people on the road and the how the sky changes from black, to purple and finally to a grayish blue.  I sing and she reprimands me and tells me that she wants to hear the singers, not me.  We are on our way to CHOP and for the first time in forever, I feel zero anxiety about going.  Normally, I spend the week prior to these visits vaguely nauseous and eating excessive amounts of chocolate.  This time, I'm experiencing none of it.  How can I?  I look at Bean and see a bundle of energy.  She is a vivacious little girl full of possibilities, wearing tutus and twirling in a sparkling crown.  She's not a heart patient.  That's in the past.  That was when she was a baby.  I mean look at her, her cheeks are practically rosy!

We arrive at the hospital, and Bean practically prances out of the elevator to see the planets dangling from the ceiling in the large, open aired atrium.  We get to the cardiac center and fill out our paperwork.  Bean plays on the IPad intermittently, and I quietly pity all those other moms with their sick cardiac babies.  I look at Bean and again, I think how lucky are we that we are here, at this point in time with all those baby milestones reached and behind us.  We are fine, really, we are.  Look at her, with her head bent over the IPad and laughing at the Princess Sofia app.  This checkup is just a formality, just us crossing our 't's and dotting our 'i's.

Bean is a champ throughout all the prodding and poking.  She thanks every nurse.  She laughs when the EKG stickers are glued to her body.  She quietly sings "Let It Go" during her echo cardiogram.  She sits still while they attach and re-attach her pulse oxyimeter to get a better read.  I'm only slightly troubled by the flashing 81 number.

While we wait for the doctor, Bean transforms into Rapunzel and I become Flynn Rider.  We play "I Spy" in character and then mercifully, the doctor finally walks in and we make small talk.  I anticipate her saying the typical "We'll see you 6 months!" and sending us on our way.  Instead, I get the "I'd like to cath her again so we can get in there and really understand what her heart is doing before we can go forward with the surgery."

The hamster running around on the wheel in my brain actually fell off the hamster wheel at this point.

I stare at the doctor, dumbfounded.  She explains further about oxygen saturation levels, and Bean's physiology and how we should get in there before Bean gets sick, before she lacks energy, before she's symptomatic.

I'm in this tiny room with a doctor, whom I trust implicitly, and my 4 year old daughter who is playing by the window with her Bear and I want to scream and run out of there because I did not see this fucking coming.  This was supposed to be a special mommy and Bean day.  We are going to the fucking zoo after this!  Don't tell me that my daughter is actually going to need that fucking surgery that we always talked about.  She's fine!  Look at her!  Look at her little face and smiling, squinty eyes!  Look at her little flapper bob of haircut, and how her bangs always flop into her eyes.  Look at the way she skips and hops around, bowing energetically to an imaginary audience.  She doesn't look like a cardiac kid.  God, I don't want her to be a cardiac kid.

But she is cardiac kid.  My vigilance and early anxiety was lulled by her sheer enthusiasm for life.  She's a cardiac kid.  She was born with a wonky heart and that wonky heart didn't miraculously heal as I somehow thought it would.  We are finally going to have to deal with it, and it shakes me to my core.  She's old enough now to remember the pain from the last cath.  I cannot even fathom what surgery will be like and the requisite recovery.  My brain won't even go there.

I'm often told that I'm strong or that my husband and I are amazing for how we handle this.  We're not. Really, we are terrified, scared and sad.  We handle it the only way we know how, which is that we move forward and shield all our anxiety and fears from Bean.  Bean is the strong one.  Bean is the amazing one.  Bean may only have 3/4s of a heart, but it's a hell of a lot stronger than my whole heart.  

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