Wednesday, March 13, 2013

Night Vision: the ability to see in low light conditions, whether by biological or technological means.

On my second attempt at trading with Kevin (for home vs. hospital) for a night, I conclude that it's much much harder to be apart in the dark.

When Aria lays next to me in that stark white hospital room, she is more than the sum of the biological functions we are tweaking and twisting. Her soul is alive. She is here and now.

She is a future Stanford valedictorian and pediatric oncologist motivated by a personal story of triumph.

She is getting a Minnie Mouse actress imported straight from Disneyland for her 4th birthday.

And fuck the doctor, she is getting a dog that ends in "doodle," with whom to spend her Summer of Social and Physical Isolation.

In the dark of the hospital room, I am empowered by her baby-like sighs, by her drawings of our four-person family in her sketchbook, by the medical machines tweeting the songs of her vital signs, and by the nurses who sneak in every few hours to confirm and document that vitality.

In the dark of that hospital room, I can sleep.

But when we are separated, the future changes. When I am home, and my early morning insomnia partners with my need to plan, I get angry, afraid, ashamed, and confused.

I get angry about the dog.

A dog would probably make Aria happier than any other gift could, and would lighten her impending loneliness. But that same dog that poses a higher risk to her health because of her destroyed immune system.

I get angry at the doctor--her fabulous, nationally ranked, risk-averse pediatric oncologist--about the dog.

"Others" at the hospital suggested that a dog "would be fine," but can a mother live with all possible outcomes of that kind of defiance?

I say nope. (And frankly, the last several medical personnel who told me that Aria "would be fine" embarrassingly whiffed the pitch.)

I also get angry at the "Others" for driving me to research, consider and make a painful decision. Blindly following the doctor's orders (with a dramatic humph) would have been far easier.

I am afraid because the day, (the very goddamned day!), that I took Aria on her fateful trip to the Loyola emergency room, I'd been planning her birthday party.

She turns 4 on May 13 and Lyric turns 6 on May 31. They are building stronger friendships now, so party attendance matters, and thus I sent a save-the-date email.

After a shelter-procured doodle dog, my "back-up" birthday present for the girls was to be a set of sweet bunk beds.

Except...what if. What if. What if... (If saying things aloud makes them too real, then writing them for the world to see might make them true.) I can imagine the worst-case-scenario loud and clear. And it's horrifying, for us and for Lyric.

I feel guilt because I sent that birthday save-the-date email to a few of Lyric's friends. But I hadn't done the same for Aria. I viewed her friendships as less significant because she's younger (than Lyric), more apt to stick to parallel play (than Lyric was at that age), and less absorbed in the significance of her emerging social life (than Lyric).

Than Lyric, Than Lyric, Than Lyric. I am the reason parenting books are written, no?

When Aria received the Minnie Mouse Beauty Salon Set from a donor at the hospital yesterday, she was on Cloud 9, declaring "This is the one Charlotte has!" I reviewed the phone photo Charlotte's mom had sent me from that Christmastime play-date, and I saw Aria in full princess costumery, brushing Charlotte's hair with a Minnie Mouse brush at a little dressing table. Decidedly *not* parallel play.

Over the last few months, Aria's been adamant for a social calendar that keeps up with her big sister's. Yet, I still didn't place enough value on Aria's friendships to bother finding out if her school friends, Charlotte and Abigail, would be in town for her birthday party.

As for my confusion.....

I've spent too many dark hours considering the notion that "there is no such thing as a selfless act." No matter what generous gesture you make, no matter how painful a chosen action may feel, you derive some sort of emotional satisfaction from taking it, or you wouldn't do it. I've yet to imagine a scenario where that doesn't hold, even as a mother.

Now entangle that selfish notion with the concept of love. Even motherly love. Especially motherly love. I cannot help feeling a selfishness in all my anguish and sorrow (side note: those are great names for a pair of black cats).

My anguish must be selfish because Aria doesn't know what I know. So even if. Even if. Even if...the worst worst worst possible...thing...happens, she might still not know it's coming. I hope with every cell of my being that she doesn't know. Or is young and zen enough to embrace it without fear.

I think so far she has experienced more lethargy than pain. And over the past week, she's bounced back remarkably from all the terrorizing by masked giants with syringes. I see her--in quite a positive light--as the face of "what doesn't kill you makes you stronger." All have said she would be resilient, and all have been right. In other words, she's tired but she seems fine.

Oh, but I'm not. Nor is her sister or her father. And so my confusion .. and shame... arises from how I can't fully feel the depth of my tiny daughter's circumstance. I can't empathize enough with her probable fear or pain, because I'm too locked into imagining my own fear and pain at the prospect of losing of her from my life and from our family.

And so, tomorrow, I'm sleeping at the hospital. In that darkness, my I can see better.

6 comments:

Unknown said...

I don't know what I would do in your shoes but I hope it's exactly what you're doing. You are brave enough to imagine everything and brave enough to admit your fears. I am with you, Kari. I'm thinking about your tiny warrior and her fearless big sister and their stalwart parents. I don't really know if I'm sending you energy, but I mean to. I'm thinking about you a lot and hoping for the best and I read in admiration the mindset of another mother, in a terrifying situation. I hope you get some sleep.

Unknown said...

I'm with Kate, I feel the exact same way. You must stop punishing yourself for actions taken prior to this 'war.' In actuality I would have thought of the bday party in the same way, Ami nor Thomas didn't have their first real play date until they were 4! I would have thought of Ami's friends as priority because she would be devastated (and is) if they couldn't make it, where Thomas would be like 'Oh, well,' because he's not there yet. You CANNOT beat yourself up about these things. Aria IS resilient. And it is OKAY for you to have these feelings because this is happening to you too. I don't think it's selfishness. It's important for you to understand what's going on with you, so you can be there for everyone else too, in addition to Aria. Because YOU will be resilient too because of the love you have for your girls and your family. And empathize? Your child is your heart outside your body. Yes, they are their own person, but everything that happens to them right now, at this moment in life, is happening to us. I wouldn't say you are not empathizing, you are, you get it. She doesn't, and that's a good thing because it's allowing her to be...Aria. I'm thinking of you honey.

Kari McCarthy said...

Thanks, Kate & Sanobeia. Part of the reason I'm writing these things down is that I suspect most of my feelings, thoughts, guilt, etc., are typical. Writing them down helps me to see that, and to remember that it's OK to feel these normal passing thoughts of a mom of a sick kid, so long as I don't get bogged down in the them. And I'm not so far. Most of the time, I feel very positive, I suppose because I have no other choice. Hopefully I'm getting those positive thoughts across, too -- though like the evening news, the drama tends to garner more notice than the cute end-of-news-segment about the world's cutest turtle.

And the other reason I write this blog is that I've always taken great comfort in hearing or reading the darker thoughts or fears of others, especially moms, because is makes me feel less alone. Most moms I know hesitate to reveal their dark side, for fear of being judged (and we do get judged constantly). I want to offer others the chance to see that real people, real moms, experience a full spectrum of feelings about their kids and circumstances, and it's all perfectly healthy and normal.

Kari McCarthy said...

Oh, and the other, other reason is that when I make jokes, I feel better. So hopefully some of this seems...darkly humorous...to someone besides me.

Unknown said...

I thought I posted earlier, but I guess it didn't go through.

I totally understand what you are saying Kari, I get it, I do. And I think it's very courageous that you are getting all your thoughts down and sharing. At the same time, it's hard to read and not say anything especially when all of us are rooting for you guys.

so forgive me if I get on a soap box from time to time! I will try to help it.

Kari McCarthy said...

My blog is one big soap box, Sanobeia...climb on!