We have this area in our house that has a very long section of floor; you can see by the picture, which I took just now, that today the space is used to spread out a really long piece of easel paper, and said paper is then used to draw elaborate BART tracks or elevator schematics. When Child 1 was a pre-walking baby, this space was used for him to crawl back and forth, or push his cart back and forth. Eventually, and also today, this space was used for him to run back and forth.
My brother died in April 2003, he was 35; in 5 months it will have been 10 years. One day when Child 1 was a baby he was at my house, sitting on the couch that would have been just off to the top left of that picture. Watching Child 1 crawl back and forth in that space I remember him commenting "wow, he really likes to go back and forth back there," or something like that; I don't remember the specifics. It didn't make an impact at the time but I guess it stuck in my mind, for some reason.
This was before our diagnosis, before Child 1 even had a speech delay; he was 15 months when my brother died. We had no idea, at the time, that this space would become significant in later years; when he would spend hours running back and forth in this space, this roomy space on the other side of the couch. Where he can now spread out his very long piece of easel paper and draw his most favorite things. There was nothing significant about his comment of my brother's, at the time.
Today, though, I will sometimes watch Child 1 flap his hands, jump up and down and run back and forth in this space, and my memory of that day is sparked. I remember what my brother said about that space behind the couch and I get angry; so very very fucking angry. My brother, who took notice of the significance of this back and forth space before any of the rest of us did: he's supposed to be here now. He was supposed to have been here when Child 1 started walking, when he was diagnosed, when he went through his home program, when his brother was born, when his brother started walking, when they both went off to school..... He was supposed to be here for this. He's supposed to be here now. He's supposed to know his nephews, to be the awesome Uncle who gives them treats and teaches them tricks that I disapprove of, who they want to hang out with when they have a day off. He was supposed to be here for them. They're supposed to know him.
He would have kids of his own now; I would have my own nephews or nieces. My kids would have these cousins, they would have their play house in San Francisco with all the toys and the games and the piano. This is what was supposed to have happened. But cancer had other plans for us, apparently. And almost 10 years later I still get so angry about it. So fucking angry.
This isn't how it was supposed to be.
It's not fair. It's not fucking fair.
