My Baby

Joey is my baby now. I don’t know exactly when it happened, but not too long ago, Kit stopped being the baby. Joey is still taller, but he is behind Kit in just about every other developmental way—Kit is my big boy, and Joey is my baby.

As I write this, I am also browsing the internet to see what to do about diapering Joey now that he’s outgrown size 6; apparently Medi-Cal should cover diapers, but I’m not sure how to make that happen. I have emailed his social worker, but she hasn’t responded. I guess my next step is to talk to his pediatrician—I know that I need a prescription for diapers. I just don’t know what to do with it!

My sister Tammy visited us a couple of weeks ago. We don’t get to see her often, and she’s wonderful company—I wish we lived closer together. She and I sat up chatting and making cookies one night, and it came up that she thinks Joey is catching up to his peers. I tried to explain that no: he is making progress, but the gap between Joey and his typical peers keeps widening. I don’t think it was exactly making sense to her until I remembered that her close friend’s son just turned four. Joey is only six months younger than Leo, I said, and I could see her suddenly really get it, and I keep thinking about the look in her eyes. She loves Joey, and I don’t think that she has an unkind bone in her body—but just seeing her realize that he really is never going to be average—she doesn’t think any less of him, that’s not what I mean, but it was a big realization and I saw it happen and I keep remembering what it looked like.

Joey qualifies for an extended school year; special-needs kids who might lose a lot of ground if they were out of school for the full break get an extra month or so of school. He is at a different school, with a different teacher, but I’ve heard excellent things about her, and he seems happy to go to school in the morning. He and Kit are both going through growth spurts, so he’s sleeping more—or trying—Kit has realized that he can climb out of his pack-n-play, and will starting jumping on Joey and trying to convince him that 8 p.m. (or 9 p.m., or 4 a.m.) is the perfect time for a dance party! Joey’s swimming whenever he gets a chance, and Kit is starting to warm up to the idea, especially after Tammy spent hours playing in the water with him. Mostly he hangs out on the steps of the pool, periodically shouting “I swimming in the pool!” while Joey peacefully paddles around the deeper water.

Joey is going through a period of shrieking more and hitting me more (not hard), but remains a sweet and mellow person who’s going through some stuff right now. I want to write more about Kit, and about Cricket, but I’ll save that and hopefully post again soon.

Kit Kapers

I am having experiences with Kit that are, I’m sure, the most normal little things—but they feel like nothing that I’ve ever seen or experienced before. I took him out one morning last week for a pastry (for him) and a cup of coffee (for me), and he was happy to sit in an enormous chair and occasionally walk around the coffeehouse and smile at people. After a little while, he started signing to me that he was thirsty, and then he waited patiently while I got him some milk—and by “waited patiently,” I mean “staggered around signing <thirsty>,” because for Kit that sign requires you to throw your head as far back as possible. It was a really nice time, and it’s so strange that he can now, say, pick out a doughnut for himself or enjoy watching passersby. I’m acclimated to Joey, which makes having a little boy who smiles at strangers sort of baffling. But in a good way.

Kit is almost two. He does not show any signs of autism—and you can believe that he has been closely scrutinized, not only by me but by the professionals who work with Joey. He loves trains, trucks, and the color purple. He counts and reads numerals 0–10, and has started reading and signing letters; when he sings the alphabet song, he gets stuck for a bit on W: “You, bee, double you you you you you you you you you you you . . .ex, why . . . zee!” He is very nervous of most nonfamily these days, but he warms up to most people pretty quickly. He loves to wear cowboy boots and a bucket hat, and he loves to hide and be found, or run and be chased.

M-Day

Nora told me that she and Cricket would call on Birthmother’s Day, and then they didn’t. I had sort of been dreading the call—it’s nice to hear from Cricket, of course, but I don’t see Birthmother’s Day as a holiday that I’d like to celebrate, and it does feel like an “Of course you don’t get contact on Mother’s Day, that’s just crazy talk!” kind of maneuver. I don’t assume that’s Nora’s thinking, but I do think it’s a common adoption trend. But they didn’t call, and I wonder whether Ruth told Nora that I asked not to get a call on that day last year. The night of Mother’s Day, Nora sent me a text saying that she hoped I’d had a nice one; I wrote back the next day, thanking her, with a cute picture of Joey. As it happened, I was quite sick on Mother’s Day, so I sort of got to skip it.

And now, today, I’m missing Cricket. I don’t especially know what to do with that feeling right now. Nora told me that they might visit in June, and then that they probably won’t visit in June, and perhaps in October . . . ? I am trying not to get invested in their visit decisions, since I have no input into them and can really do nothing for now but wait.

Mister Book and I talked recently about whether we’d ever want to have another child; we have this talk every so often, and we mostly agree that it’s unlikely that we will. My IUD is good for another three years, and so we won’t make a real decision until then—but the thing that could possibly sway us would be Kit wanting a younger sibling. I do feel guilty about the fact that Kit doesn’t have a typical sibling, and that he would if we hadn’t placed Cricket; Kit has two brothers and can’t play with either one.

Billy and Ben

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.

Kidneys

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.

 

WAD

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.

The Week Behind

Howdy!

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.