I’ve been back in my solipsistic place, well, let’s say yo-yoing in and out of it. Now in all fairness, I’ve been dining quite well on the story of the nitwit who told me that having twins is harder than having a disabled child – it’s a gas and everyone to whom I recount it has a funnily unkind word for that naïve soul.
But I’m finding that telling (+retelling) that story is keeping me in that hate tank-black heart place. I don’t like being there and I don’t believe it’s my natural habitat.
A wildly patterned fuchsia room playing Duran Duran and smelling like cedar and eucalyptus is my natural habitat. And don’t forget the bars of chocolate.
Yesterday I found online a kindred spirit, a woman who was brave enough to write about a tragedy which had befallen her family. We had a similar event about which I am just not ready to write. But she was. I read her essay and it literally (and yes, I am using that correctly) took my breath away. I wrote her to thank her and explain how deeply moved I was by her story; I also told her a bit of ours. She wrote me back the most validating of responses and it brought me to tears. The acts of reading her brief piece, writing her, then reading her reply was an exercise in healing for me. I hate the way that sounds – so new agey. She made me feel better, though. For the first time I did not feel alone. I did not feel misunderstood. A stranger from half the world away made me feel better.
I think I fell a little in love!
Today the tall-blonde-drink-of-Tennessean-water who is the Little Angel’s keeper at camp told me he’d had a crying spell in the morning, which is unlike him. (He is one jolly blueberry muffin.) As she was telling me this her own face squinched up because she said she herself was sad because he couldn’t tell her what was wrong. (He is unable to speak / sign – understand speech / sign.) She picked him up and cradled him like the baby he thinks he is, and he snuggled in and settled down.
She went on that a bunch of the guys (the male counselors of the traditional day camp, not those who work one-on-one with the Special kids) came over and said “my turn!” They wanted to cuddle my Little Angel as well. His tall-blonde-drink-of-Tennessean-water said “well, alright, but you know he prefers breasts.” And he does – he likes their squishiness and the sensory input his face receives when he smooshes his forehead and bridge of his nose in there.
he loves to sleep with a blanket over his face — sensory!
I adore my son. Of course I do. But he’s a tough nut and requires industrial strength nutcrackers to figure him out. The meat is sweet and worth the work, but you have to really want to interact with him and put in a lot of time, energy and patience to do so. I am always delighted concomitant to bemused as to why strangers are drawn to him. Mostly, of course, I am so deeply touched and grateful people can see him, really see him. For whatever reason the male counselors at camp connect with my son, want to connect with him. That makes me both happy and very lucky. Very lucky indeed.
On the way out of camp we ran into another nitwit – she is a neighbor who has a son with mild Asperger’s and for whatever farchadat reason she thinks she understands what we go through. In the past I’ve humored her while inside I’ve seethed; today I shut her down, saying “no, it’s not the same.” “No, you don’t get it.” There’s no denying she’s had extra issues with which to deal due to her son’s mild dx, but it’s not really even apples and oranges: it’s more like cucumbers and plums – both fruit, but very different. If your child can function independently in the world, has both expressive and receptive language, is toilet-trained, goes to a GenEd (regular) class in a GenEd school, will one day be allowed to drive a car, get a job and live on his own, then that’s great and good for you! But it also means you have no idea what it’s like to have a perpetual infant in a growing body whose medical + therapeutic needs and durable medical goods are extraordinarily, bankruptingly expensive. You don’t speak my language – I speak yours, but you do not speak mine.
This is why I am seeing a therapist to deal with my anger issues ….
But then tonight I met a new mother: her son is three months-old. She looked fantastic but seemed a bit blue, so I asked if she was okay. After going home with her newborn she experienced hemorrhaging resulting in an emergency hysterectomy. Her first child is her last. She cried and I held her, and I cried with her. She got a little embarrassed, blaming hormones; I told her my tears weren’t from hormones but because I thought she was amazing to have endured that, and how proud I am of her. She cried a little more and I hugged her again.
I think I want to study reiki.