Friday, October 4, 2013

Wait for Me

I hear that phrase more than I'd like to hear it.  I hear it on the playground.  I hear it after preschool when Bean is running after her friends.  I hear it when I'm  power walking through the supermarket collecting ingredients for dinner.  At first, I chalked her slow running as simple genetics.  She's my kid.  I'm not very fast, ergo, she is not fast.  I didn't think my body would produce a Jamaican sprinter.

Now, it's clear to me that her slowness is more a function of her wonky heart.  She can't keep up with her friends.  She self-regulates, stopping herself when she must to take a breather and to drink water, but she physically can't keep up with her peers.  And she's starting to see that she is lagging behind, especially when her friends can literally run circles around her (which preschoolers tend to do).  It breaks my heart a little bit.  I want to hoist her on my hip and chase after those kids, shouting and playing their silly games.  And I can't.  I just can't.  Sometimes, I interject myself into whatever weird princess chase sequence is playing out and scoop her up to collect leaves or to look at the funny shape of the clouds, but Bean will only play with me for so long.  She wants to run around with the kids, not her Momma.

Bean went in for her fourth cardiac catheterization on Tuesday.  People ask me all the time, "How does she do it?"The answer is simple: this is all she knows.  She doesn't know any alternative.  I suspect at some point soon, she might ask why HT doesn't get pictures of her heart taken at six month intervals.   For now, I say that her heart is just extra special.  And it is.  It really is.  I think back to when I first found out I was pregnant with her.  We were ecstatic, elated and thrilled and then I went for that second sonogram and there was no heart beat.  The doctor prepped me for a possible miscarriage and I came home crying, awaiting my grief.  And then, I went in for another sonogram to confirm it and there it was, a beautiful little blip on screen with her heart furiously beating away.  Even then, she was a fighter.

All these procedures that she goes through that terrify most adults are just part of her world.  Yes, she's brave, but she's also just a really terrific kid.  When she saw her hospital bed, she only saw the special dinosaur pillowcase and the Littlest Pet shop toys and the tea set on her bed.  She didn't see the cords and wires and pulse oxymeter.  We never let her see our fear or anxiety because that would make her more scared.  We act like cheerleaders and smile like beauty pageant contestants because that's what Bean needs to see.  Fortunately, CHOP makes all of this easier because the nurses and doctors are so extraordinary.  They also all loved Bean.  Bean thanked them profusely through tears, coughing fits, and while slugging apple juice.  Only once did she really complain and that was after she was finally allowed to get up and walk around.  I got down on my knees to try to walk with her to the bathroom and she held on to my hands crying "Mommy!Mommy!  Please make me feel better!"  I held her close, trying to to reassure her and trying to hide my face in her hair so she couldn't see my tear-filled eyes.  I rubbed her back and promised her that she'd feel better soon.  And she just whimpered "oh thank you, thank you!"

We are home.  She's adjusting to not being allowed to watch six hours of princess movies.  She has some restrictions on her activity for the next week which I dutifully explained to her.  No gym class this week and definitely no running around.  We had a play date with a little boy and as per usual he was running around our yard in circles and Bean was trailing behind him.  The little boy shouted to her to chase him and she shouted back, "My momma said I have to walk this week!"  See, she's just a really terrific kid.


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  2. Bean is a pretty fantastic little girl, but that's not surprising because she has fabulous parents... Love you all!!!!