Something Old, Back for the Haunting

Dear Family,

“They say what doesn't kill you makes you stronger. I should be able to bench press a Buick by now!”

—Internet Meme

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My new hobby: taking photos on days when things mostly feel Horrible, and trying to see how happy I can make the world appear despite personal unpleasantries.

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The thing is, that freaking meme is true! Our family is stronger than ever. Ben understands, because he was once somewhere very similar, what Eliza is going through. (He says, “I used to have a hard time stopping-screaming too. But I really _couldn’t_ eat, and I think Eliza actually can…”) Both Ben and Jem are awesome with their sisters, and have recently been put on the payroll to provide much-needed respite for Jeff and me to take walks and Breaks during the week. Ben and Jem have also taken on their household chores with relative aplomb, and it’s finally much more helpful to have them around than not. Meanwhile, Jeff and I discovered how our "decision making" process was formerly something else entirely (generally a broad mixture of complaining, venting, brainstorming, and confusion), and have been streamlining it. This has made our daily conversations and decisions much more clear and less stressful (except when we’re complaining, venting, or confused - but at least we don’t call it decision-making!). We’re also identifying those times when it's actually the situation, not ourselves, which is responsible for the insanely stressed feelings of the moment. And we are taking steps to practice good "self care," while trying simultaneously to figure out what that mostly-seemingly-impossible term means. I feel more than ever the supportive and handsome and wonderful presence of my husband, father of my four intelligent and amazing children, right there by my side as we do honorable battle to vanquish The Viral Beasts of Gut Dysbiosis and Mold Poisoning.

But we’ve entered crisis mode with Eliza again, and it’s going on two months since the end of our Tantrum-Free-Days of Summer. Although I hate to admit it, because I want things to be simple and straightforward and I don’t want to be one of those people who’s always going on about Having a Stressy Life, Eliza’s health really is worse than ever right now. And while we’re just beginning another round of GAPS to see if it can turn things around, it sure doesn’t feel like some Surprising Solution anymore, and besides which we’ve been working our asses off to improve our collective health and nutrition since forever and I want to be DONE with this shit!

There is absolutely nothing simple that I know of which can “solve” the intense stress of a child who chronically refuses most meals, requires spoon-feeding most of the time if she is going to eat at all (except when she’s offered sweet, crunchy, or otherwise addictive foods, which she craves with a frightening vengeance), is constantly complaining of maladies such as headaches stomachaches dizziness cramps tiredness etc etc etc, is rigid and rude and explosive around her family (tho not so much with other people), and who screams. So. Fucking. Much. Especially at mealtimes (which gets to be hellish, in a monotonous and digestively upsetting way). And at bedtimes (which, as the exact opposite of Sweet and Soft and Soothing, are Sometimes Even Worse). And she flips out about the most ridiculous things, and for so long at a stretch, and so loudly and/or screechingly and/or rudely, that I begin to entertain terrible fantasies involving utter desperation and escape, not to mention frightening urges toward corporal punishment. But those latter urges are only on the days when there are shades of gray - when she whines a shit ton, for example, but isn’t obviously impaired, and so it’s easy to think: “Oh my god, this child hates me and is awful and has a terrible personality and I have obviously not taught her to behave properly!! I want to knock some SENSE into her!”

On days like today, however, it’s very obvious that my child is very, very sick. It’s obvious because her tantrums are like seizures, during which she cannot respond and she keens like an animal - and Ivy listens for a while and bursts into tears herself, and I also want to cry because it is so super fucked up for a child to scream for two and a half hours straight (and that’s just the morning tantrum!). In between tantrums on days like today, Eliza is red and blotchy and her tiny body is sort of rigid but also subdued, and the rest of us all walk on pins and needles because who knows what will set her off next. This is no enormous black-blemish-type personality flaw, but Something that has taken over our daughter like a part-time, vaguely insane demon.

When it’s clear that we’re back in Crisis Mode, the anger melts away and I am so very sad and exhausted and overwhelmed by the enormity of this sickness plaguing my daughter, and how to get enough food into her, and what food to give her, and how on earth to get her better so this doesn’t happen anymore ever again.

Combine this with nighttimes during which Eliza and/or Ivy wake Jeff/me up 2-3 times, sometimes for thirty minutes or more at a stretch, and you have a recipe for parental burnout. We’re nearing torture-levels right now, even while acknowledging the could-be-even-worse status. (Jeff recently commented that a lot of things actually make sense if you accept that we are currently in purgatory, serving a moderate sentence.)

Anyway. When I saw that meme quoted above, I thought: even though we're maybe not yet bench-pressing Buicks, we have the skills to easily carry at least Volkswagen Beetles for great distances! And the great irony is how often Jeff or I feel weakness and impotence combined with the Great Crushing Weight of Exhaustion. I can’t even begin to imagine how terrible Eliza’s feeling, and that is probably just as well.

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I started composing a sign to hang on our camper door when Eliza’s screaming, that says, "our daughter suffers from Disruptive Mood Dysregulation Disorder [actually a new DSM Thing]; we apologize for the inconvenience."

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Monjool [no ones name - it’s the story!]
by Eliza

Once upon a time, there lived a family that were gourds. One was named Zoomsla, and she had another sister named Blanche-wah. And she had a tree next door that she would sneak into. And she had piggy tales like the mousies in the books she read. But her brothers were little babies. The girls wanted their brothers to be prettier, so then thunder began outside, and booming monsters came with hurricanes in their minds. But then the hurricanes blasted out! But then they were so scared that they blasted away. The mother and father and sisters were glad because the monsters had gone away. Then the next hurricane came and they boomed the kids and the mother and father and babies blasted away. And they lived happily ever after.

The end of Eliza’s story.

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Thanks for keeping us in your thoughts, and wishing us luck, and sending along any new quick-fix gut-healing protocols that you’ve recently successfully completed, not to mention referrals for an ideal Fecal Transplant donor…

Happy New Year (any day now, I hear it’s coming),
love,
Sarabeth