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3 Days

I am not so much of a wreck today as I was last night.  Last night was really bad, following a really bad day.  Anxiety by light, depression by night.  I tell myself it’s all normal, I tell myself there is no normal, but still my brain finds these ways to make me feel like everything is falling apart.

I started a paper journal.  The only words in it are:  Words Fail.  Because as much as I love words, there aren’t any that I know that can cover the combination of ‘it’s no big deal’ and ‘nothing will ever be the same’ that I feel. I have so much I want to write about but it doesn’t convert nicely to words right now.  I might try poetry.

Speaking of poetry…I have embraced my inner hormonal teenager and bleached my hair, then added plum to try to tone it.  It is now this blotchy blond-and-faded purple which looks terrible down but I absolutely love it pulled up.  I may just keep it.

I got my period for the first time since before I got pregnant and after a shaky first day, I give Lunapads a big thumbs up.  Especially the leopard print ones because it’s nice to feel a little rock star when you’re wearing your period panties.

I have informed all of Lucy’s teachers that she will be missing {insert name of class here} and all of my professors that I reserve the right to flake a little this week and next.  I’m not likely to flake, but if I do this way they know I have a legitimate reason.

I have passed the point of dreading the telling people because I can’t handle having to assure them that everything is fine.  I have hit the point where I want to have everybody admire me for being the proud, stoic matriarch.  I also want a proud, stoic matriarch hat, and maybe some white gloves, and definitely a parasol.  And when I’m not descending into Faulknerian insanity…

I spend some time here in the real world but it’s been really hard for the past week or so.  I keep trying to find things to distract me but I think this has been the wrong approach.  For the next few days, I’m going to pack and plan and prepare and hope for the best.  I may even wallow a little, but I’m mostly just going to put my head down and push through all of this crap.

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6 Days

I am hesitant to write anything about our pre-admissions visit yesterday.  On one hand, it’s a little “look at me, feel sorry for me” even for my attention-grubbing self.  On the other, kids have surgery every day and when it’s your kid who is having surgery, there’s little more comforting that remembering that fact.  And so the latter wins out.  I will most likely be doing a lot of “we”-ing in this because I’m not entirely sure that I’m ready to address how I am feeling or what I am thinking.

We like the surgeon.  This is so critically important it sort of surprised me.  Not that he has experience or credentials, but that he sat with us for half an hour and explained first why we were doing the surgery, and then how it would be done, and after going over the risks, he explained the many fail-safes they have in place to do their best to keep any of the risks coming to pass.  We toured the Pediatric ICU where Lucy will be for the first day after her surgery, got our time, and then were seen out to the lobby to reel a little bit before we were picked up.

And so now we have a plan.  We know who is getting us to the hospital, who is watching the baby while we are there, when it will start and when it should end, and where we will go to see her when it is all over.  The PICU is not nearly as bad as the Neonatal ICU was when she was born, although I did well up with tears when we left–it isn’t fun and games there but at least the patients are larger.  We know we like the hospital, the nurses, the doctors.  We know where the cafeteria is, and where to go to get non-hospital coffee.

There’s still a lot we don’t know, of course.  And the list of risks involves some pretty heinous stuff, although mortality is at the very lowest point of riskiness.  We have to have a lot of trust.  Thankfully, we do.

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I am both a wreck and completely handling this all Remarkably Well.  Simultaneously,even.  It’s the strangest feeling to have this pain bubbling under the surface while knowing that it’s not there because I’m not processing things.  I’ve been able to reduce the anxiety through exercise and distraction, the depression is mostly contained by the Welbutrin, and the lack of concentration/memory is just going to be there until this is over.

I am becoming less and less afraid that this will be The Thing That Drives Me Over The Edge.  That my lack of breakdown indicates that it will be coming later.  I have to keep reminding myself that I had my breakdown, I got help, I have people who know that I have Major Depression and am being treated for it, and that I will not just lose it and off myself.  It will be a long time before I get over the residuals of this fear, but it’s normal, I would imagine, for children of suicides.

I am trying to keep using words even though I feel sometimes as though half of my vocabulary has been sucked out through my ear.  Even when I stammer or use the wrong word or mangle the pronunciation, I’m trying to use them anyway.  I feel somehow like words will be my salvation through all of this.  Words and love.

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I am switching to a paper journal to log the rest of this experience, I think.  It warrants a book of its own, and besides that, I feel the need to buy myself something special, to treat my feelings as important instead of as a burden, and to coax my words to stay with me.

As Steff would say, “[I] don’t know whether to shit or go sailing.

9 days

It’s the anxiety that is the worst.  Not fear about the procedure, or about getting behind on my work–that I can deal with; it’s tangible.  The anxiety though–the waking up fine and being overwrought with dread halfway through my morning coffee, the need to move move move move to keep from becoming mired in terror–it’s starting to get to me.  One day of it was fine, but this second is really terrible.

I am happy to be seeing not only the therapist but the psychiatrist tomorrow because I need to hear that this is normal and that it isn’t going to swallow me up and never let me go.  I know these things, but hearing them from People Who Know Such Things is kind of critical at this point.

Friday we have the pre-admissions testing, the weekend is her last of soccer for the season, and then it’s school school school clearance surgery.  Nine days left to wait, nine days to try not to panic, to try to keep it together, to find ways to fill nine days’ worth of hours.

One of the hardest things to deal with is my newfound inability to remember anything.  I go to run errands and skip a store.  Last night I forgot to pick up our CSA share.  I am editing my chemistry paper and do not remember writing an entire passage of it.  To be completely honest, I don’t even know if the paper is ok to turn in but I’m submitting it anyway because fuck it.  An item off of my to-do list is worth more than a grade right now.

I am trying.  I just don’t think there’s anything I can do but wait for this all to pass.

I’ve been avoiding the entire process of writing.  Even in my classes where I am required to write, I just sort of put my head down and ram some words through.  It isn’t pretty, but I seem to be getting my points across so maybe it’s just not a pretty time.

It doesn’t feel very pretty a lot of the time.

We started soccer this weekend and it hauled me feet first out of a string of morning-to-night days of low to mid level anxiety.  To be honest, I was really relieved to have the break; it was starting to feel like it would be like that until we were through Lucy’s surgery.  It may seem trivial to get such a reprieve from sports, but I’ll take the distraction.  Especially since I can fall into Champions League this week and then practice next weekend.

The surgery…we should have a date today.  It is almost definitely going to be either next week or the week following.  I am waiting to get the concrete date so that I can spring into action with notifications, preparations, and whatever else I’ll have to do to get things ready.  The thought of waiting anymore is almost more than I can handle, but unfortunately it is out of my hands for now.

To be completely honest, I am also waiting to find out so that I can see if the anxiety abates or consumes.  So far I am not kept from my day-to-day tasks (thanks in large part to my antidepressant and how glad am I that my breakdown happened before all of this so that I could get acclimated to the med.) Thank god that I am with the new therapist as well.  So many things fell into place at exactly the right time and the only explanation I have for it is grace.

There’s still something about writing that doesn’t feel right.

How’s the Writing Going?

There was a whole big long entry here that must’ve been eaten.  That really sucks.

Feeling

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.

Preparing

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.