Any iteration of purple has never been my thing, but now I am strongly feeling the lure of it, especially lilac. I’ve decided to paint our master bedroom fireplace the prettiest lilac — or is it violet? What is the difference? Of course, first the GC needs to actually come back and finish building it ….

this is Benjamin Moore’s Grape Ice, 1395

The miracle drug for the Little Angel is not, alas, a miracle, and approximately one week after introduction significant and significantly problematic issues arose. We’ve had to titrate him up as the seizures have returned, and I am so angry about his toxic cocktail. He is eight years-old and should be pure as the snow, but that body is pumped full of poisons and you know who is poisoning him? Me! I’m the one administering the meds in the hopes they give his brain and body a rest from this horrible seizures.

One of the side effects is a massive increase in the hypotonia (think civil disobedience); he is floppy and strong at the same time, resisting my moving him and subsequently hurting me. Of course he’s not doing it on purpose — he doesn’t have that ability, but it still hurts. The radial nerve in my right forearm is damaged but I honestly don’t know how to perform many of his ADLs without using it and neither do the OTs. Ha ha! Not sure when his Special Needs changing table will be arriving from England, and of course then it has to be installed, but I’m ready. I am so ready. I will be having a party with fancy invitations and a chocolate tower because I will be able to wipe that chocolate right off the changing table! Probably with my tongue, but whatever.


For the Little Angel, this is the best table on the market as it’s height adjustable and has an integrated padded safety rail. We’ll continue to change him in our laundry room which, while good-sized for a laundry room, cannot support a freestanding table. And I don’t want to change him in the middle of the family room: there is something to be said about human dignity! Well, not that it would fit in the middle of our family room but you know what I mean.

I heard this past Wednesday that Little Angel’s stair lift is due to arrive October 13. Of this year — I know, I had to ask, too. Let me just say this is my first and last time not overseeing a home modification (evidently those in the know simply call it “home mod”). If I had GC’ed it it would have been installed in August without the headaches associated with these nitwits. I am pissed about them because their actions have been not only duplicitous but outright unethical, and after it is installed to my satisfaction you can bet I’ll be filing a grievance so other families don’t get screwed. Grr.

Okay bright side: I love embroidering so I’ve decided I’m going to join one of those Stitch ‘n’ Bitch groups to go and work on embroidering a slipcover for the stair lift chair. I’ll get Girl Time (yahoo!!!) plus fun time for me doing the actual embroidering. I have been collecting inspirations like bananas, but ultimately think I’ll do something with his initial and big animals, like horses. Duh.

Monday was a hard day for me, I think this has actually been a hard week. But Monday night I felt as if I’d been in a car accident, my body so tight and tense. I know it’s the stress I’m carrying from literally carrying the Little Angel. I snapped at the H.J. that he owes me everything for my hard work with the Little Angel and to his credit he completely agreed. so I purchased an outrageously expensive pair of booties with which I’ve been smitten. Fuck it. If I’m hurting my body carrying / lifting the Little Angel then I’m doing it in cute shoes.

Of course, there is more than an air of the ridiculous to me because I just finished caulking and applying the first coat of fuchsia paint to the newly installed crown moulding in our fuchsia powder room. A few years back I’d plastered the walls / ceiling (everything in this house had that knock down texture which I loathe) — they hadn’t been plastered when the plasterers were here a few years before that because I was then using that powder room as the diaper changing room and could not be without it for even three days. Could not do it. So I plastered it myself, painted it glossy fuchsia, silver leafed the ceiling, hung a drippy crystal chandelier (well, that I didn’t do myself because the box had to be moved from the wall to the ceiling and I didn’t / don’t know how to), painted the builder’s grade oak vanity high gloss black, had a marble countertop installed, and installed myself (!) mini marble white and black hexagonal tiles. But never did crown in there because it is a powder room of seven planes. Crazy angles and hard to reach areas, so I was able to be happy because it was all fuchsia anyway.

pre-crown installation

But the H.J. wanted crown in there so I had it installed. He’s pretty much a slob and his finish work is acceptable if you have no standards — not low standards, NO standards. So even though I was kinda ticked about having to figure out how to get to all those crazy heights and angles I did it and damn it looks good! Modesty, thy name is not moi.

So I am ridiculous talking about my trop cher booties whilst sitting in my painting clothes, which are also my plastering and caulking clothes. They are covered with years of projects (of course I wash them but a lot of that stuff does not wash out!) and I don’t really even look sufficient to pop out to fetch the mail, but there you have it.

Sometimes I am really tired, physically and mentally. We Special Mamas work exceptionally hard doing things we’d never envisioned — changing diapers for ten years. Feeding a baby bird for ten years. The truth is, of course, the love I get to give and receive is greater than all that. But I think I am going to supremely enjoy admiring the view of my lilac fireplace over my new booties.

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