Es un milagro

I’ve been in such a pissy mood lately that I’ve been thinking of renaming this blog “Fuck You, Idiots” but I’m pretty sure that would defeat the purpose of doing this online internal exercise in finding happiness … ahem.

Obliquely I referred to the Director of Aquatic Therapeutic Recreation the other day (she enables people of varying abilities to participate in water sports – Little Angel requires a constant one-on-one [as he is absolutely water un-safe – no perception of danger, no impulse control, no self-preservation instincts] and she often assigns two water coaches to him so he is super-duper safe). Now in all fairness, this woman has long rubbed me the wrong way: the first time I met her she said something thoughtless about the Little Angel (and this is the population she has gone out of her way and pursued an advanced degree to work with), and quite a few times she has dropped the ball when it’s come to signing up for classes (like she’s “forgotten to do it” – admittedly, I am fastidious and get everything done quickly and perfectly, which is no doubt partly why I want to rename this blog “Fuck You, Idiots” and why I have a jar of Nutella close by – death, you gorgeous creature of the eternal nap). Anyway, so on Thursday she told me I should follow the blog of a friend of hers, a plastic surgeon in Los Angeles who has one child, one non-disabled totally typical child. The husband is also a successful plastic surgeon. The Director said to me that I would “get a lot from it, how to put things into perspective.”

Fuck you, Idiot.

Pray tell, of what “perspective” am I in need? The “perspective” of the incredibly wealthy with one non-impacted child? The “perspective” of parents who frequently go on childless holidays because they have live-in childcare and can afford said vacations? Fascinating! Let me get right on that.

I choose to either read the words of those who are walking the same walk as I because they GET IT or I need to totally escape into what I lovingly refer to as my Lady Porn. There’re a few in-betweens, sure, but pretty much those are in what you’ll find my nose.

The Director explained about herself that “unlike [me], [she doesn’t] have the luxury of staying home to raise [her] children.”

This is a woman who has repeatedly met the Little Angel, has repeatedly told me how fantastic he is, how much she adores him, how much she “gets” him (whatever). My body naturally got very stiff as I turned toward her, practically spitting “Let me explain a thing or two to you about having a severely disabled child. It is not a choice to not work. I can’t work due to the responsibilities inherent in having an infant in a seven year-old’s body. Don’t you think I’d love to work, to earn an income, to be validated, to be with adults? Little Angel’s disabilities are severe enough that the state determined we need to be ‘skilled’ in order to provide appropriate care.”

My next comment would have been, of course, “Fuck you, Idiot,” only she quickly scampered away. So I’m feeling pretty good I won’t be seeing her again anytime soon.

Thinking about her and her comments brought up others who have made dumb comments, some of which have had more toxic impact than others.

When the Little Angel was in Kindergarten a mother (of a typical classmate) strongly suggested I volunteer with the blind. I had said that I’d recently seen the fantastic documentary Blindsight and that I was especially touched given my own background in the Himalayas (visited Tibet [not a fan] and lived in Nepal where sure, we trekked + climbed but mostly worked on animal preservation – I’ll tell another time). This woman had also seen it as she and her husband fancy themselves climbers and arrange très cher expeditions. She has only one child and both her and her husband’s parents live in the same town, so they have lots of free childcare. (My mother is summering in the Hamptons because she made her priorities clear eons ago and my mother-in-law is in Japan and has no interest in coming here. Truthfully, it’s probably for the best that neither visit. Both our fathers have “gone to glory,” my new favorite euphemism for “died.”) She and her husband, according to her, go away together, just the two of them, at least once a month for a weekend, and then a few times a year for international trips. She said herself that other than the occasional class party she doesn’t volunteer at the school.

I volunteer nearly full-time because it’s the right thing to do and I’m able: remember – I’m living in the lap of luxury because of my “choice” to not work! So in front of the group of Kindergarten mothers I snapped at her “you bet, if you’ll raise both my children, manage Little Angel’s therapeutic and medical care and do all my volunteering, I’ll get right on volunteering with the blind!”

She replied “no need to be such a bitch.” I’m a bitch? Me? Okay, so I’m the bad guy because I called her on her asinine and utterly ignorant suggestion. What I should have said was:

Fuck you, Idiot.

We (my husband, whom I should just refer to as the H.J., for Hirsute Japanese, because seriously, how many Japanese guys do you see who have full beards and a hairy chest [which I quite like, fyi]) attended the wedding of a darling young colleague of his yesterday, and, true to recent form, I was feeling snarky. This is *his* colleague but he had done precisely 0% of the work in securing a sitter or purchasing a wedding gift. The gift is the easy part, the sitter, not so easy. The Little Angel has not been put to bed by someone other than one of us for five years and remember, he just turned seven years-old. I’ve had sitters but they’ve helped me with the Big Angel – picking him up at school or taking him to some activity when I’ve been otherwise occupied with the Little Angel’s therapies or hospital stays. The two girls, young women, really, I’d trust both had other plans for the date. I found another woman who adores Little Angel and whom I knew would be great with both boys, but when I asked her if she’d be interested in sitting her immediate reply was “what do you pay?” I told her and she said the going rate was 50% higher. It left me unsettled. I’d pay that, but it just didn’t sit right with me that her instinctual response was to wonder what I pay. All our other sitters have never had a problem with my rate. We ended up using another young woman who’s worked with the Little Angel but after we got home the Big Angel was clearly unhappy: evidently she didn’t speak to him or engage with him at all. She heated up his soup and that was it. She only interacted with the Little Angel. Big Angel is eight years-old, so it’s not as if he’s independent. So I kicked myself for not paying through the nose and using the other woman. I cannot win.

However, at the wedding I did win when I met a bunch of the H.J.’s colleagues. While chatting with a few of the women I was asked what I did, as in for work. So I said that I take care of my children and that our youngest is severely disabled so it’s a full-time job.

Two of the women quickly walked away in search of booze and non-disabled talk (I don’t know that part for a fact, although I do know about the booze); the third asked “what’s his disability?” The H.J. answered “Penelope Syndrome” and this woman countered “does he ride at XYZ hippotherapy facility and is his name Little Angel?” Her darling daughter rides at the same place and for a spell evidently rode in the slot right after him with the same therapist.

Talk about a small world. This mom and I spent the rest of the evening chatting about everything and anything, and it was so easy. Her daughter will soon be eight years-old, is also in a diaper, has not insignificant developmental delays and has a primary diagnosis of dyspraxia. Our children have different diagnoses but they have many, many similarities, if just for the fact that they are square pegs in a round-hole world. This mother and I share a lingua franca; we’ve drunk the same Kool-Aid, or rather, we’ve had to drink it. In the literal blink of an eye my pissyness was erased and I heard angels singing and all that jazz. Maybe not angels singing but I certainly felt my chest open and I just felt plain good again. I felt no need to tell anybody to “fuck off.”

On the considerable ride home the slightly-sauced H.J. said to me “es un milagro!”

Today I felt good all day. I didn’t once feel like telling anyone to “fuck off.” No one made comments I couldn’t brook. And it’s nighttime and I still haven’t felt the need to eat any Nutella.

Es un milagro.

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