Archive for August, 2009


I’m sitting here and I feel like I should write something but it isn’t coming easily.  For one thing, there is this underlying layer of a word pulsing in my head–heart…heart…heart…that doesn’t go away.  Second, there are these kids who need Mommy Mommy Mommy, a second layer of head noise.  Third, there are the things I should be doing–picking up toys, loading the dishwasher, taking a shower, making a cup of coffee.  Fourth are the extra-vivid dreams of last night’s awake-asleep-awake-asleep.

I sound like a basket-case, don’t I?  I’m really not.  All of this is going on inside my head but it’s sort of lulling me into a steadiness, keeping me from obsessing about things I can’t control.

Yesterday I finally felt a feeling about the procedure, the result of the procedure, the need for open heart surgery to correct the hole.  I felt angry.  Not like an anger at God or medicine or anything grand like that, but an anger that I can’t just keep this whole experience tucked inside until I am ready to feel it.  I have to talk about it and report on it and make phone calls and acknowledge that in the future, I’m going to have to take my kid back to the hospital.

Does this make any sense?

Any response, no matter how well-meaning, reminds me that no matter how many people are there to support, this is something that is happening to MY family, MY kid, MY husband, and ME.  It affects other people, of course, but at the end of the day, it’s something we have to deal with when everyone has gone home. It’s not bad news, it isn’t good news.  It’s just news.

And I’m not ready to deal with it.

We go back to the cardiologist next week and talk through the results and the plan and all that, and then we move forward.  We’ll keep checking the sites to make sure they are healing properly, hold Lucy when she sobs that she wishes this never had to happen, and laugh with her when she’s not thinking about how much it sucks to have all of these things she can’t do.  I’ll keep trying to keep her comfortable and cheerful and loved.  And we’ll take the next step when we know how soon we’re going to get there.

This may be the last time I write about this for a while, not because I want to pretend like it isn’t happening, but because it isn’t happening yet.  I reserve the right to fall apart as soon as I’m ready, or to be thankful that it isn’t much worse.  Right now, though?  It just isn’t time to do anything but hug my kids and my husband (and cats).

I have nothing but thanks for everyone who has offered support and I love the feeling that I, we, are not alone in this process.  I just can’t respond right now without having to exposit, and exposition requires too much analysis that I’m not ready to do.

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One of my biggest weapons against fretting is preparation.  List-making, planning, shifting things from one place to another.  I am doing a lot of this.

On Tuesday, Lucy is having her procedure*.  I say the word ‘procedure’ an average of ten times a day, and every time I say it, I think of Eddie Izzard’s “I’ve invented a maneuver”.  It is a clunky phrase at best.  At worst it sounds like something you’d say in place of a scary technical term.  But a procedure it is and so procedure I repeat.  And really, it’s not that scary of a procedure in and of itself.  On paper.  When it isn’t your kid.  I think the procedure will go smoothly and Lucy will be home resting on Tuesday night.

I am really trying not to be afraid of what the results will be.  I remind myself hourly that my worry does not have any impact on the outcome.  I remind myself that the result is happening no matter what.  It’s working for the most part, thanks to my meds and therapy.

I have been almost obsessive about making sure Lucy is occupied, both now and for when her procedure is over.  The nurse told us recovery isn’t equipped to feed kids so I’ve stashed a bag of Pirate Booty for a surprise treat.  I took her Friday to pick out a new pink iPod with matching pink headphones and we’ve been loading music onto it.  I spent much of today creating a playlist for her, like a recovery mix tape.  I have a doll that she’s been asking for for the past 2 years for her hidden in C’s closet, to give her before leaving for the hospital.  Tomorrow we’ll pack books and take a run to the grocery for more snacks.  But tonight?  I just can’t prepare anything else right now.

And so I’m listening to the Cure and drinking a beer and musing, for lack of a better word.  And it’s been an eternity since I wrote anything and I just sort of need to.  Because, really, I can’t do anything for Tuesday besides buy things or fall apart and I’m just not into either of those choices.  When it comes right down to it, the bitch about all of this is that I could pat my back for being such a thoughtful Mom or I could beat myself up for the defect but in the end, it’s entirely out of my control.  There is no ritual I can perform to ensure that the docs will tell us that the hole can be left alone, no ritual to keep Lucy from being scared or hurt.  It’s all out of my hands but the packing.

*the procedure is a cardiac catheterization.  Because of the size of the hole in Lucy’s heart (VSD), her cardiologist wants to do the cath to conclusively determine if the hole needs repaired surgically.  Her heart function states that the hole can remain as is, the size of the hole indicates that it should be closed.

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