Headgear + Strawberry Cheesecake go to Washington

We are having the most exquisite electrical storm. Watching the night sky flash like a strobe and feeling the really deep rumbles of thunder feel soothing.

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courtesy of the H.J.

Tomorrow is the Big Angel’s ninth birthday party and he requested strawberry cheesecake.

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I just put it in the fridge; this makes the second cheesecake I’ve made in my entire life. The first was a peanut butter cup cheesecake made earlier this year for our friends Amy + Eric (who are named as our children’s guardians in our wills) for whom we hosted an Hommage à Fromage. That was also the first time I ever made gougères. Truth be told, I’m happier as a vegan but I am happiest seeing people I adore so happy around me, sharing their happiness avec moi.

It’s been a hard week, and I am grateful it’s Friday night, but it’s not over. It never is. Little Angel will have a sub for his SI-OT warm water therapy tomorrow morning, then it’s Big Angel’s party. I am grateful my sensitive Big Angel has a delicious group of friends with whom he’ll be celebrating. These kids are so good, so kind, that the fun they have will be contagious. He is most excited that we’ll be making a Harlem Shake video, and the H.J. has spent a long time holed up with whatever programs on his computer, getting ready. I still cannot understand the words to the song, though. It makes me sound horribly middle-aged, but then again I am middle-aged, that I cede all IT stuff to him. If something needs to be done on any of the computers I ask him and it’s done. I am very lucky but also very lazy.

A coalition of non-profits approached me this week, wanting to use Little Angel as the face and story to push new standards for state Medicaid (for disabled children) through. I’ll probably write more about this another time. In my “previous life” (before children) I worked as a political ethicist, and if you are an ethicist you are born to it, it’s in your DNA. While I no longer keep my ear as close to the political ground as before, I am still closely tethered (and I have LOTS to say about the Supreme Court’s decisions this week). As an ethicist, I felt strongly about cooperating; as a fiercely protective mother I was very cautious. Ultimately the answer had to be Yes, of course. Yes because if we can make any piece of the world a better place then we must. The Little Angel is desperately lucky to have a mother as ferocious, tenacious, connected as I; not all children do. Not all parents have the emotional stamina let alone the time or resources. I have a car and money to put gas in it; I have a fast internet connection at home. I speak, read and write English fluently. These are gifts. While the Little Angel (and we) was handed an incredibly unfair and unwanted situation, we are able to make it work. We have to make sure the work outlives us.

He started his Special Ed summer school this week; he’ll be starting the second grade at the end of the summer and he’s been attending SpEd summer school since preschool. One of these years it’s just going to go smoothly, without me having to get involved and do others’ jobs for them. One of these years. Please. The well-meaning but unfortunately misinformed principal called me to introduce herself: lovely. From her I learnt that Little Angel is receiving NO speech therapy and NO occupational therapy. Those two, especially the communication piece, are of vital importance. We have to be consistent in the work we do with him Every Single Day to develop and deepen the neural pathways so his nighttime subclinical status epilepticus (“silent,” non-physical seizures well over five minutes in duration) do not remove / destroy that hard-earned knowledge. Suffice to say she was wrong, although she did argue with me about it. Instead I cut the conversation short, saying I didn’t mean to shoot the messenger and I would speak with the Special Education Director. Which I did. And from whom I learnt that Yes, OF COURSE Little Angel is receiving nonstop communication and OT reinforcements, with the therapists themselves consulting with his one-on-one.

You know, when I’d sent him off on his bus to school that first day (and yes, of course I followed the bus to school) I trusted that his Plan would be followed and he’d be receiving what he’s supposed to (and legally entitled to). But one mistake by the principal sent me into a tizzy, an understandable tizzy, an unnecessary and avoidable tizzy. Because of lack of expressive (he cannot speak, sign, write) and receptive (he cannot understand speech, sign, writing) language of course he could not tell me what he’s receiving at school. My head feels tight and fuzzy just recounting this latest episode.

The Big Angel got headgear (orthodontia) this past week as well, and that was a huge hill: it is unlike any headgear I’d ever seen. It resembles a baseball catcher’s protective face gear.

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photo found online — not my child

He tried to be stoic. He was stoic, I mean. I kept asking him if he was okay, if was hurting. His eyes got red and his face tight, so I asked if he’d like to have a private word with me; then he fell apart, bawling that he looked like a freak. He doesn’t, of course, but it is rather striking. He was so blue and dejected that I suggested we come up with a reward system, and funnily enough his mood brightened right up. Ta da! He has been a good boy about wearing it at home. But somehow the experience of navigating his feelings and then negotiating with him really took it out of me. I’m not sure why. Probably a lot of neediness concomitant to Little Angel’s shorter schedule (due to summer school) and then our own legislative process, readying documents and educating myself. I suspect I’m also getting ready for my period, but cannot recall if I’m due an Angry Ovary month …. I hope not. My family hopes not, too. Ha!

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Big Angel’s favorite roses for their fragrance which I put next to his bed so he could have their sweet smell; instead his cat attacked the bud as she cannot control herself around plants.

For my own ME ME ME selfish goal of the week all I wanted to do was paint my toenails whilst watching Wimbledon. I love tennis and played throughout childhood. It was the one thing I was allowed to have, and I have the sweetest memories of it. My parents, my family never attended any of my matches and for some reason that makes the memory even more special, because it’s just mine. ME ME ME.

I am in awe of what I do in a day and I am in awe of what I accomplished this week. I am not unique. Special Mamas like me truly rock this world and make it happen.

Happy Birthday, Big Angel. I love you. xo

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