I’ve vaguely mentioned cooking meals for another family at various times in the past; on Saturday night, the woman for whom I was cooking died. She had planned to bring us homemade bread and jam on the Sunday, and it was already made—I didn’t expect her widower to bring it the next morning, but he did. It was sudden and not sudden—she had and rejected two lung transplants, and was not doing very well—and now she’s gone, and I will never get to talk about comic books with her again, which is an embarrassingly small loss next to her husband Ben’s.
Yesterday afternoon, my brother returned from the hospital after a two-week stay. He looks better than you might expect after five surgeries. I sort of want to connect this to my last paragraph, but any attempt looks garishly trite on the page. But I’m grieved that we’ve lost Hillary, and glad that we haven’t lost Billy. I would be more than happy to have lower stakes in our lives for awhile, please.
On Tuesday, my mother gave my brother a kidney. I don’t remember whether I’ve given my brother a blog moniker—I usually just call him my brother—so I’m going to call him Billy. Since Tuesday, a series of things have gone wrong for Billy, and today (I’m writing on Sunday afternoon) he had his fourth surgery. He got the kidney (surgery #1), he developed a clot in the artery to the new kidney, they went in to remove the clot and rebuild the artery (#2), they put him on blood thinners to prevent clots, he started bleeding internally, they opened him up again to try to stop the bleeding (#3), and then there was some more bleeding, which led to a pool of blood around the kidney, so they opened him up again and stopped that bleeding (#4). My mother, who is recovering from the operation in which they removed her kidney, is terrified for Billy; I’m less panicky, but still scared and sad for him.
Billy is in an excellent hospital that is an hour away in light traffic, and the traffic is rarely light. I’ve only made one trip to see him—children aren’t even allowed on his floor of the hospital, so it’s hard for me to find a time when I can leave them, especially since my mother is in no condition to watch them—but my father has been going every day, and sometimes twice a day. We’re all tired and freaked out, but no one is having a harder time than Billy.
If you have prayers or good thoughts to send our way, my brother could surely use them.
Yesterday was World Autism Day, and I’d like, belatedly, to talk a bit about Joey and his autism. I heard a researcher on the radio earlier this week talking about how even in autistic kids who regress, when you look back, you can see signs going back into their infancy; although we didn’t know how to read them at the time, certainly this was true for Joey. Joint attention is one thing they particularly lack—Joey was very rarely willing to look at things we pointed out, or to take an interest in things that we were interested in. Mr. Book and I thought that he just wasn’t interested, and respected that without realizing that it was a problem. As a baby, Joey was much more interested in looking at walls and ceilings than at faces—mine or anyone else’s—I remember blithely describing this to someone before we had any idea. The Mister and I were so willing to accept that he had his own agenda that we never knew that we ought to be worried. Now, in Kit, I see a person with his own agenda who also is socially engaged and attentive to the things that others find interesting; had they been born in the opposite order, we could have gotten help for Joey much sooner. Or, of course, if we hadn’t placed Cricket. . . .
Joey is an unbelievably sweet and mellow little dude. I know that I say this all the time, usually using exactly those words, but it is the perfect truth; everybody likes Joey. He has made almost no progress in speech over the last six months, still using only about thirty single words, and his articulation is poor; he is sensory seeking in just about every way, pressing his stomach against things to feel them especially and drinking unattended hot sauce; he is more and more dancing, grooving and perfectly self absorbed in his happiness; he likes to read to himself, and resents being read to. He’s a peach.
I would make Joey not autistic if I could, but he’s an unbelievable gift, no matter what hardship he has in his life—I am the luckiest in my sons.
After talking with Joey’s behavioral therapist, I have figured out that Joey’s current aggression is mostly sensory-seeking behavior; I’ve changed his “sensory diet,” and there is less pinching. The main change has been sessions of me hugging him much tighter than I personally would enjoy being hugged: I wait for him to ask for a squeeze (“Geese!”) and then squeeze him for maybe five seconds. We repeat this over and over again, until Joey gets tired of it.
Every night, I give the same bedtime speech to the boys in English and ASL—Saturday night, for the very first time, Joey tried to sign along. He is completely amazing. Kit has developed his own bedtime routine, which involves running for the hills and laughing like a maniac.
Mister Book is working overnight this week, so he stayed up all night Saturday night—I’m two hours behind him, so while I baked cornmeal lime cookies and almond and chocolate ganache sandwich cookies for my parents’ bible club, cleaned the kitchen, and drank a modest amount of Jack Daniels, he read to me over the phone. This is one of my favorite of our relationship traditions; I bake and he reads aloud to me from choose-your-own-adventure-style books. These days we’re working on his personal favorite series, six books about a ninja and his adventures. After we got off the phone, I learned that my almost three-year-old cell phone would no longer charger; it had died the true death.
My brother’s kidney transplant has finally been scheduled: April 29. It’s been two years since we learned that he was in end-stage kidney failure, and we’re all thrilled. He’s coming out to California for the transplant, as our mother will be the donor, and he’ll stay with us and convalesce for three months. I’m very much looking forward to seeing him again—he and I can be nerds together, and he loves his nephews quite a lot. My sister Kate is coming to visit, too, and her visit may overlap with his; it feels like I haven’t seen her in forever, and I just can’t wait.
My mental health is not amazing. But it could be worse, for sure. Summers are better than winters, and every day I get closer to seeing my sweetheart again.
Both Kit and Joey hurt me on purpose every day, multiple times per day. They each do it in different ways; Joey pinches and chins, which is a term I learned from his behavioral therapist and refers to digging his chin into me, hard, whereas Joey slaps me. Most of the time, I can just get through it—mostly I move away from the kids at those times, tell them that it is not okay to hurt people, and that I don’t want you in my lap if you’re going to hurt me—but sometimes especially slaps in the face really bother me. I don’t hit the kids, and I want only to use time in—but I have put Kit in time out a few times when we were just both at a point where we needed a couple of minutes apart. At those times, I put him in his room and tell him that I’ll be back in two minutes; then I come back and talk to him about how we need to be working together better than we are, and here is what I need from you (stop hitting me, quit rooting through the trash, stop shoving Joey, etc.): What do you need from me? And then we go back out together, and mostly things are better after that—at least for awhile.
There have been periods when the kids were less aggressive with me, and I know that there will be more of those in the future; I expect Kit to grow out of using violence with me altogether.
In the meantime, here we are. I’m not enjoying the hurting, but Joey has otherwise pulled out of his rough patch; he’s having a good time and really engaging at school. Kit and I are going on and hosting more play dates, and he is more and more often able to enjoy the company of other kids—although in a group of five or more other kids, he is unhappy. We had a lot of rain over the last few days, which is a rare occurrence in these parts, and both boys have been mesmerized. And I bought the boys matching Easter outfits and can’t wait to dress them up.
I hope all of you out there are getting some spring weather, and keeping well.
I think I am having the authentic toddler experience. Kit is shockingly funny and wild and wow, such big feelings. I think most people have an idea of the downsides to the toddler experience: screaming, freakout tantrums because I won’t let him empty out the silverware drawer, for example. But he’s such a bright light, and I’m really enjoying him.
Probably everyone who parents more than one kid has the experience of having her every expectation violated by kid number two; I’m having an extreme version of that experience. Joey is autistic and also a very sweet, mellow kid; Kit is typical, very verbal, and a firecracker. Joey cuddles in my lap and Kit jumps on the couch, pointing out the window and exclaiming: “A car! Over dere!” Almost a week ago, Kit developed a game in which he would throw a (clean) diaper into the air and I was supposed to provide sound effects. I am truly awful at sound effect production, so after a few attempts (“ka-pow!”) I started exclaiming at the diaper as though it were a cop on the edge in a ’70s film: “You’re a loose cannon, diaper!” “You’ve got no respect for authority, diaper!” and so on. He loved it.
Skype with Mr. Book is getting better and better; Kit is always thrilled (and Joey is usually quietly pleased), and has started showing his daddy favorite toys and saying “I yuv you!” This season’s hottest toy at Casa Book is a broom whose handle snapped short (and has been wrapped in electrical tape). Kit is also very into building with blocks recently—he builds tall towers of single-block stacks, and when they inevitably fall over (at seven or eight blocks tall), he screams at me to help. I don’t want him to get the idea that I won’t help him, but at the same time, it doesn’t seem super productive for me to just build block towers for him. What I’ve been doing so far is just to start building something different, like a pyramid, and then Kit usually starts adding blocks to my structure. He’s still incredibly mad whenever the blocks fall down, but I guess that’s just something that’s going to keep happening for right now.
I sent Cricket a letter; I think I mentioned that here. On Saturday, I got some texts from Nora giving me his answers to my questions (he likes chicken tacos, and his favorite movies are Frozen and The Lorax) and explaining that he wanted to sing “Happy Birthday” to me. She explained to Cricket that it isn’t my birthday, but he still wanted to sign—so she sent me a video of him doing so.
This is great. I keep being surprised by how nice it can be to be in contact with Cricket now that he’s old enough to take an interest and now that Nora is willing to facilitate communication. I get to hear him tell me that he is a super hero who has every power and no weaknesses. I’m still wary of being too often in touch and exhausting Nora’s patience—but I sent a letter in November and one in February, and they both went over well. I’ll send another letter in a few months with new pictures of Kit and Joey printed inside.