The logistics of frustration

If Chickadee had cancer—if she had a tumor in her brain or rogue cells infiltrating her marrow—everything would be different. Well, almost everything. The thing that wouldn’t be different would be the fear and the worry and the what-if-ing I try to only indulge in in the middle of the night.

But people wouldn’t avoid us or say, “I don’t know what to say.” They would say, “I’m so sorry” and they wouldn’t act like we were contagious or whisper about our parenting.

Our health insurance would pay for her treatment, because that’s what health insurance is supposed to do. Even though brain surgery and marrow transplants are much more expensive than the treatment she needs, which they refuse to pay for, because health care in this country is undeniably broken.

And we could be there with her, all the time, and know what the heck was going on. read more…

Working on my radical acceptance

So my new (awesome) therapist commented to me this morning that in her experience, people fall into one of two categories: Either they are worriers—chronically agonizing over absolutely everything—or they tend not to worry at all, even in situations where it’s appropriate and advantageous to do so. I bet you have NO IDEA which category I tend to fall into. (I’m hilarious!)

This leads to a lot of talking about this concept of “radical acceptance” (which I will leave for you to Google if you so choose), which basically boils down to a philosophy of “These things just ARE, and cannot be changed, so I accept them and move on to dealing with the things which ARE changeable.” HOLY WOW is this easier said than done, but it turns out that despite a lifetime of trying to get one’s head around this logical concept, having a mentally ill kid in the hospital is kind of that final push needed to realize “I have to find a way to live with this and still be a person with a life and hope and happiness.” Lucky, lucky me.

So that’s what I’m doing. Chickadee is in the hospital and I do not like it, Sam I Am. I do not like it one bit. But obsessing over the hows and whys and what-ifs changes nothing, except that it makes me miserable. Hmmmm. I have a lot of work to do.

In the meantime, my current thought processes reminded me of an incident from my youth that feels relevant, here. (Also, Off Our Chests has changed their name to Feel More Better, which I kind of love.) C’mon over and check it out.

Dehydration Nation

I bought myself a fancy new dehydrator. Wait; that’s not entirely true. I did ORDER myself that fancy new dehydrator, but I didn’t pay for it. I had some credit laying around over at Fab.com and one day instead of boutiques comprised solely of upcycled vintage shabby chic repurposed milk bottle cardigans or whatever, they had this dehydrator. And I said to myself, “Self, I have always kind of sort of wanted a dehydrator. I think.”

And between that conversation and the fact that we’re not really spending money on anything, I became the proud owner of this here dehydrator a few weeks later. [Fab.com is awesome if you 1) want something random and 2) don’t need it for at least a month.]

Here is where I would turn this all into a delightful and poignant metaphor if I’d had a little more coffee. You know—dehydrating food while I am constantly weeping and probably dehydrating my own damn self. It’s poetic. Or stupid. But I’ve only had one cup so you’re spared. Phew. read more…

“I can SEE!” said the blind boy

A little while back I suspected that Monkey might be having some trouble seeing. (I think this was because he’d developed the habit of reading with the book resting within an inch of the tip of his nose.) I took him to the optometrist for an exam and they said no, his vision was only very slightly off (like, maybe 20/30 instead of 20/20), and he was fine. Probably we should tell him to hold the book a little further away.

I told him to hold the book out further, and he did. End of story.

Except that while Monkey was away on this last trip with his dad, my ex called me up one day and said, “I think Monkey needs glasses. When’s the last time you had his eyes checked?” He may or may not have said it in an accusatory way, but of course all I heard was “DAMN, WOMAN, YOU ARE A TERRIBLE MOTHER. THIS CHILD IS BLIND, YOU NEGLECTFUL WHORE.”

I went ahead and made an appointment for Monkey to have an eye exam a couple of days after he returned. read more…

Swimming, swimming, swimming

My dear friend Ruth—a survivor in her own right—sent me a lovely necklace with a charm that says “Just keep swimming.” I laughed out loud when I opened it, and then I cried a little, because that’s sort of what I do, these days. But yes, I’m trying to keep swimming.

We visited with Chickadee this weekend and somehow the subject of my overdue mammogram came up (don’t ask me how, I don’t remember) and Chickie’s eyes got big and she grabbed my arm. “MOM! You have to go do that. I have enough stuff going on, I can’t have you being sick! Promise me you’ll schedule it this week.” And instead of bursting into tears that this was the first time in months she sounded like her old self, the first time she seemed genuinely concerned about another person, I patted her and assured her that I can’t possibly get sick, our family is too big of a mess already. We all laughed. And then I promised. (Mammogram this Friday.)

And today I’m over at Off Our Chests, thinking about some of my favorite things, and how sometimes they keep me sane and remind me that happiness is still out there, even when it feels elusive.

I kind of hate this stupid oxygen mask

We have reached the part of our program where people who love me place a gentle hand on my arm and say things like, “What are you doing for you?” This always makes me want to laugh (inappropriately). Oh, I’m just eating bonbons and kicking back, you know. Because why not? It feels like the sky is falling, sure, but I’M WORTH IT.

Generally I stammer something about how OH I am managing, you know, and Otto always makes sure we have some ice cream in the freezer, and not to worry, I’m just fine. Or, you know, not fine at all, but it’s okay.

There’s a twisted part of my brain that feels like if my kid is suffering, it’s my job to suffer along with her. I know this. I also know that it makes no sense. But that’s one of my dysfunctional coping mechanisms that feels more comforting than the realization that there’s really nothing more I can do at this point. read more…

Meanwhile

I’m trying to keep up with my garden, but I keep stumbling across zucchinis that managed to hide until this happened:

It’s good, I guess, because once they’re that big the only thing they’re good for is baking, and that means every time someone takes Monkey for us while we go Tend To Things, they get a bonus bag of zucchini muffins.

Our lives may be completely upside down, but dammit, if you’re part of our village, you’re getting some goddamn baked goods.

Inappropriate laughter

I have become the Queen of Inappropriate Laughter. This isn’t entirely new; I have always had a bent towards the unintentional snicker at less-than-optimal times. But now—mired in grief and worry—I go entire days in complete numbness, it feels like, only to have the odd comment strike my funny bone. I laugh until I cry. And that’s a nice change of pace from just crying.

Otto and his brothers text each other all the time. The other day, Nearly Nickless sent Otto a text that had him guffawing. I asked to see it, and at first I wasn’t sure what was so funny. It was a picture of Nickless teetering on the edge of curb. Otto pointed out that it was taken at the restaurant where my mother-in-law fell and broke her hip after Christmas. It was a reenactment photo!

We couldn’t stop laughing. Even as we kept choking to each other, “This is wrong. THIS IS SO, SO WRONG.” Didn’t matter. We laughed and laughed. You used to be able to take me anywhere twice—the second time to apologize—but now it’s safer for all involved if I just stay home and alternately weep and cackle to myself. read more…

In the never after

I kept thinking that once I knew for sure what was happening, it would be less overwhelming, and then I could say “Hey, here’s the story, I’ve finally unclenched long enough to tell you.” I could sit down and figure out what to tell, how to tell it, and then I could assure you that everything was going to be okay and not to worry.

That was a good idea, I guess. I mean, it would’ve been, if it had worked.

It doesn’t work because I don’t know if everything is going to be okay. A rather large portion of my brain is convinced that nothing is ever going to be okay ever again, but even if I manage to turn down the volume on my fears, the fact remains that I don’t know. We don’t know.

Once upon a time I believed that if I loved the stuffing out of my kids and worked only part time… or stopped working entirely… or worked from home… to better afford me the time and space to pack their lunches and do their laundry and tell them to put their stuff away and remind them that I love them beyond measure, the road might be a little bumpy, but it would be okay. I would be a good mother and they would be happy and healthy.

That was a good idea. read more…

“I can’t” is a luxury

She says “I can’t, I can’t,” and I keep telling her that she can.

And she hates me for it. (I don’t really blame her.)

I think “I can’t, I can’t,” but I don’t get to say it out loud. I get to talk to doctors, talk to the insurance, brightly assure her brother that she’s fine, just fine, they’re taking good care of her, we have to believe she’s getting better; let’s go do something fun together while I’m home; let’s see if Lemur or Mario can play!

I don’t get to “I can’t” because she needs me and because if I can’t, who can?

One foot in front of the other. Because I can until she can, herself. Even if we all know I’m just faking it.

[Chickadee is in the hospital again. I will be huddled up with the family until further notice.]

Things I Might Once Have Said

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