“She lost the privilege of loving you, so now you have to love yourself.”
Today is our second son’s 5th birthday. Happy birthday little R! Five years ago today, during the first seconds of his life outside the womb, he screamed like a banshee, and I felt as relieved as Steve Young on the 1995 day he beat the Chargers in the Super Bowl. By the time of R’s birth, Dar was 2 ½, and we knew Dar had serious intellectual impairments. By then, I had long since decided that Dar’s condition wasn’t the result of anything his mother or I did, but was something he was born with. In the first moments of Dar’s birth, he didn’t cry. He was rushed to that little raised table and poked and prodded and after what seemed an eternity (it was 15 seconds) he cried. Then he spent two weeks in the NICU learning to eat. I have always thought of those first 15 seconds and two weeks of Dar’s life as symbolic: he must be painfully taught how to do everything, even things every other child seems to do intuitively.
But R is our unending joy. He intuitively knows things that even his peers don’t, like how to read books. (And he’s also a pain in the butt at times.) The big question: will he intuitively love his brother enough to take care of him when his mother and I are gone?
Who knows? But I have to think that he learns to define love based on how his mother and I love him. He learns the definition of family based on what we show and prove.
Today is the day, last weekend was the party, and we kinda went all out. Now, I’m inherently suspicious of these parents who get their kids, as birthday gifts, a unicorn and a week in Orlando. I mean, you can’t buy your kid’s affection, or can you? And aren’t you teaching him/her that things mean more than people?
The thing is, we did next to nothing for R’s 4th birthday. We did cupcakes at his pre-school. No real party, and nobody got him gifts other than family. Even at the time, wifey said we should go all out on his 5th, and I agreed.
5 (five) is a big deal. I can feel it amongst the other parents, at their kids’ birthday parties and around the pre-school. Part of it is “senioritis” or graduation fever. (Yes, they’re calling it a “graduation” in a few weeks when R and his pre-school-mates have a ceremony before they all depart this pre-school, where they’ve been every weekday for the last 4 years, and go off to separate kindergartens.) But it’s also true that the scariest, hardest, sleep-deprived-est years are wrapping up. We all know that age 5 to 10 are the sweet spot years for parents and their chitlins, the time of mutual enjoyment, assuming, of course, that your kid doesn’t have some disability. We all know that such a disability should have shown up by age 5. Your kid gets to 5, and you can breathe pretty easy that you don’t have a kid like Dar.
But we do.
There was never any doubt that Dar needed to attend R’s 5th birthday party, for the same reason that Dar needs to attend R’s 75th birthday party: that’s what you do with family you love. R’s best friend’s mom had been so nice as to invite Dar to her child’s birthday party in April (of about 7 kids total). There we learned that Dar loves those bubble-blowing machines that spew bubbles like tennis-ball machines spew balls. (Actually, they spew way more bubbles than that analogy implies.) So we got one for R’s party. And Dar loved it. And then it broke down just before other kids started showing up. So we had to hide it. And Mommy’s afternoon job of chasing down Dar got harder.
I also had about 20 balloons tied to a clip. As I brought them the quarter-mile from the car, they were flapping in the breeze this way and that, and I needed to help wifey with this other thing, so I put them in the rented bouncy house temporarily. The wind pushed them against the bouncy house’s wall, and I thought, yeah, maybe just leave them in there for the whole party, and at the end, every kid gets one, even Dar. A minute later, I gaped with disbelief as they rose 100 feet above the bouncy castle and floated away. The bouncy castle’s roof was half-torn, which the set-up people had neglected to tell us. Or should I have checked that myself? Either way, I was lucky neither Dar nor R saw the balloons float away forever.
We also didn’t get our first choice of location. At some point months ago, we asked R, hey, you want to have a kite party at the Marina? He said YES! We take walks at the Berkeley Marina almost every weekend, and he had long loved the kites. (And he already has two of his own.) But you can’t reserve in advance the picnic-table areas at Cesar Chavez Park, so I figured, okay, just get there early, even though the party wasn’t scheduled until 2, because of optimal wind at that hour. In our years of morning walks, I had never noticed anyone standing holding the picnic tables (okay, maybe once). That morning, the two best spots were taken by 8:30. WTF? So we settled for the third-best spot, next to the joggers. Guests got lost because the maps I’d sent were no longer valid and my signs were falling down. Sigh. Oh and the pizzas were late.
So, yes, stuff. But so what? We overcome stuff and we have joy and we have love. Story of Dar’s life.
The rest of the party was fine: kids don’t seem to notice a hole in a bouncy house’s roof, they loved the piñata (though I didn’t love R crying when his hit wasn’t the one that broke it), they loved the red-velvet cake (but as wifey said, it looked a little too radioactive-red for the $70 we spent), they ate all the snacks and pizza, and they especially loved the fact that they each got a kite. Actually, several of the pre-designed ones didn’t fly all that well – my fault. But the white ones flew magnificently. Weather was perfect. The white kites were designed to be designed, if that makes sense; we brought markers for the kids to personalize them, and after flying them for a few minutes, kids did choose to do that, and I loved their scrawlings. I love all of R’s preschool friends. I hope he keeps many of them when they all scatter to different schools in the fall.
As for Dar, he couldn’t be less interested in kites or a piñata. He does love himself a bouncy house. The noise of the generator doesn’t bother him (we’re lucky; it bothered R as well as one of Dar’s autistic friends who attended). Dar didn’t try to engage R’s friends, and they didn’t try to engage him. Instead he grazed on the snacks for hours while drifting closer to the seashore, freaking out me and wifey.
We didn’t do a party like this for Dar’s 5th. We won’t do it for his 8th, later this year. Are we breaking Rule #1 about parenting, don’t talk about Fight Club? Sorry, I meant Rule #2, treat the kids equally? Sort of. R asked for the bouncy house, the piñata, the popcorn, the fruit juice, the balloons, the cake. Is Dar being punished because he can’t ask?
Love is such a strange thing. I know I love R and Dar differently. That’s the kind of thing most parents can’t really admit, but I guess it’s easier in the special-needs community. I believe that we do things differently for them because we love them differently. A unicorn party wouldn’t mean anything to Dar. (Although I think a bouncy house might be a good idea.) A bunch of his presents on his birthday wouldn’t mean anything to Dar, but I could barely sleep this morning knowing that we were going to start R’s day with presents and singing.
I don’t understand love, but I do understand that love is selfish. Hey, I read Richard Dawkins’ “The Selfish Gene,” the book that invented the word “meme.” Love is love, like the signs say. We love because we want to be loved even though we involuntarily love some who will never reciprocate, like the dear departed. We grow a garden of love for Dar and a garden of love for R, and they look very different, but their soils are still connected. On days like R’s birthday, I’m struck by that difference.
Shortly after my mother died, almost 12 years ago now, I remember one of her friends saying to me: “She lost the privilege of loving you, so now you have to love yourself.”
I thought about that for a long time. I’m not sure that I don’t love myself. Frankly I think I’m selfish enough! I’m not doing half as much as I might be for humanity. Trust me, I’ve let down many people who love(d) me. But put that aside and think about what she said to me about what Mom lost. Didn’t she lose everything, when she died? Why isolate that particular thing?
Somehow, now, watching my own two kids run around R’s birthday party, I’m starting to get it. Or at least put my spin on it. Loving Dar is a privilege. Loving R is a privilege. Either could go away in a heartbeat. And both those loves must be tended like gardens. Different gardens, connected gardens. Different, not less.
And tending those the best I can is the greatest privilege of my life.
