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The funny thing about the Internet is that there is so much we share but still so much that doesn’t come through in pictures or words. See, y’all probably don’t know that I have a tic. In my right cheek. It gets really bad when I am stressed or anxious or upset.
It’s going like crazy lately.
I hate it, but it is one of the few things about me that never changes.
Tonight my psychiatrist asked me if I had ever tried anything to get it fixed. I never really knew that I could until I was asked the same thing by the neurologist while I was hospitalized with the meningitis . And even though I spent so much time embarrassed by it, even though I cringe every time my husband asks me why I’m twitching, I lied and told him that no, it doesn’t bother me.
Tonight he asked me if I have any problems with obsessing. And then if I have any compulsions. And I told him about the one where I have to write or type words sometimes to get them out of my head and move forward. And again he asked if this bothered me, and again I lied and said no.
And then he upped my script and I made my next appointment and I got outside and I walked home and I tried to figure out WHY DID I LIE?
Because I’m tired of there being all of these things wrong with me. It feels like there’s always something else to add to my litany of defects, and frankly I’m sick of it. I just want to take the pill, talk it out, grieve for the time I’ve spent being hurt or hurting myself and freaking move on. And because it is a constant. While I’m feeling such complete uncertainty about things, I know there are a couple that I can’t change and they are somehow comforting to cling to.
All the same, I think it’s time to see about getting the tic taken care of.
So, you know, it’s like catharsis already, man. I have never felt so unable to get shit out in my entire life. It’s all balling up in my stomach, all of the fear and, well, fear. It’s like writer’s block only it covers absolutely everything.
I’ve been art journaling for the past few weeks. Painting with watercolor, mixed media-y sorts of stuff. And I love it, I really do. But it feels a little like nothing after the initial “hey, I made that!”
I’ve been feeling like dancing but there’s either no space or the living room is full of people and I don’t want an audience, I just want to get some of this ick out of me.
I’ve been feeling like singing too, but the thing about having a musician for a husband, even one as supportive and awesome as mine, is that I am acutely aware that I drop out of tune constantly and go flat constantly and I end up singing half under my breath anyway because I’m embarrassed.
I’ve been writing poetry again. This comes closest to the catharsis of anything but to be honest, I can’t shake the feeling that I need to be producing SOMETHING REMARKABLE ALREADY (aside from the kids who are totally remarkable but seriously, can we do away with the whole making babies as means of expression because I sure as hell didn’t have kids as some sort of performance art/magnum opus deal.)
The other day, yesterday maybe, I went looking for a box in my big basket o stuff in the bedroom. I pulled out lambs wool and yarn for Lucy’s loom, a bag of fabric scraps and practice knitting, and finally tucked into the basket in the back I found my box of herbs and candles and stones for spellcasting. And for a minute after, I marveled at how I always dreamed of having the house where you could dig in a basket and find yarn and batting and lambswool for spinning and a box of witchy stuff.
It’s stuff like that that I want to be able to remember when I’m feeling like maybe I have no business calling myself creative, because this apartment is my creative space and all I have to do is stop judging myself long enough to enjoy it.
A day in the PICU is singularly surreal. The people there are all friendly, and aside from the kid that died the night before, it’s a remarkably calm place. You see mostly the same people and after the second day, you start to say hello and maybe one of the other parents comes to see your kid because hers is in a coma and there’s little to do while you’re waiting for your kid to wake up. And you do your best to stay out of everyone’s way while you thank god that your kid is the one who is going home in a few days, that yours is complaining about the episode of Dora you picked out (already seen) or the tray of clears (I just want some ice cream and milk!) or that you leave the cubicle for a few minutes to grab some lunch. And even though she has a chest tube and iv crammed into her neck and needs a blood transfusion and, oh yeah, the tramadol and morphine, even though she is suddenly scared of every move the nurse makes and tells you every three minutes that she wishes she had done this last week, last month, when she was in pre-K…they can’t throw much at you that comes close to the fear that you felt the day before, when you kissed her cheek as she lay sleeping in the OR and hoped that the guy running the machine that was working for her heart and lungs was as good at his job as he was at telling you how to order and feed praying mantises because clearly he senses a kindred spirit in the kid with the tarantula.
Leaving the hospital with the kid who isn’t lying prone in a bed is surreal. The streets all look different when your kid is in so much pain, when you spend so much time trying to give her space. The sky looks strange. The lobby of your building looks like a spacecraft. You come into your apartment and you try to figure out what you’re supposed to do next. You try to imagine waking up in the morning and doing it all over again and literally can’t fathom hearing and heeding the alarm except for knowing that you will catch hell from your kid if you don’t. You lay out your clothes and you throw some words together and you rub your aching back and wonder how your sicko kid and husband are faring and try to have some energy left for the other kid who just wants to have your undivided attention for the rest of eternity.
I am exhausted. I am running on fumes and muscle soother and lip buttah and port wine cheese. I am so grateful for the people at LIJ who are taking such good care of my baby, and I am so, so sorry for the family and friends who lost their baby last night. I sat there holding my daughter’s hand as the machine signaled that their kid’s battle was lost. I sat in the lounge as a man broke down in the hallway, delivering the news and asking people to keep an ear open about what went down and my heart broke. And I am thankful for these lessons I am getting, the reminders that life is to be treasured and that feeling sorry for myself is a product of the part of me that wants to keep from accepting that suffering is part of life.
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.
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.
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.“
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.
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.