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December 11, 2008

My husband and I have been going to Connecticut every other weekend to spend time with my sister, who has ALS, and help out her family. There are a lot of people who need care in that house. My brother in law has been amazing but he is the breadwinner, has 2 kids, and has a very sick wife. He has help from my parents, aunts, uncles, as well as VNA and hospice workers as well as caregivers, but it’s a huge amount to organize and he also needs a break every now and again. He’s 40 and sort of a superhero but my parents are over 70 and also burned out. We have finally set up a system wherein I am there every other weekend, and Matthew mostly comes with me because he can really help in ways I can’t anymore since getting pregnant. (I can’t lift much weight.)

For us, there is the travel and the emotions that go along with seeing someone we love so ill. There is the work associated with caring for someone very sick. And then, there are the kids.

Now, anyone who knows me knows that I ADORE these kids. My nephew, who is 8, is smart and creative and as handsome as the day is long.

He is also a full-throttle maniac. He sometimes (always) requires an extra couple of hands at school to keep him on task or ease him through transitions. Not because he’s academically challenged, but because making monkey noises is so irresistible that he might have a hard time transitioning to the next part of the school day. And a constant backdrop of his monkey noises, or whatever he’s doing that day, can prove academically challenging for his peers.

But he is superlative in enough ways that when I am not considering having him arrested, I am usually surprised and delighted by him. He’s the sort of kid who, until recently, wore a Superman costume whenever possible. If there was no one around to help him get it on, he’d just carry it in a bag. When you play a game with him, he isn’t interested in the rules as written, but he likes to make up his own. It’s not that the games he makes up are, uh, good — but this is okay because he’s not yet aiming for a job at Hasbro — but it’s interesting to watch him relate to the world.

Once, when the topic of kickball came up, he scorned playing and made up a game called “kick catch” on the fly. And then forced us all to play. This started with him standing in his red cape on a stone wall, and instead of running at the ball, he stood static and flailed his little leg out, nearly upending himself. To his highly athletic, non cape-wearing cousin who was over that day, a lovely, well-adjusted kid who is a true team player and excels at sports, this whole show was very confusing. But to me, an adoring aunt who always hated kickball and wishes she’d had the chutzpah to wear whatever and make up her own rules instead, it’s a sign of brilliance. Creativity. A welcome iconoclasm.

Over the summer I also witnessed my nephew building sand castles with a little girl. His structures were too close to the shore and got systematically demolished by waves. Instead of changing strategy, he dug in and changed the rules. “The winner is the person whose castle gets ruined first,” he explained with utter conviction. Until that point, I don’t even think she was aware that they were playing a game, but suddenly, he was winning it.

When we think about him losing his mom, we are so, so sad. But my husband looks at his character and says — that kid, he’s got a very strong character. That kid is going to be fine. I told my sister about that and she wept and thanked me for passing it on. We worry about him, so much, because especially lately, he is very withdrawn.

My niece, who is a piece of glitter on the face of humanity, is 3. Cheerful and loving, she differs from her brother in that she almost seems to appreciate rules. I recently suggested that we make up a character named “Banana Claus” who was a yellow, fruitlike version of Santa — as if one needed to explain to you, dear reader. But she wanted no part of that scheme. Santa Claus is red, and he has to do with Christmas, not bananas. I’m not saying it wasn’t a stupid idea, but her brother would have at least riffed on it for a while with me.

When she first learned to talk and I used to ask her if she was a SuperBaby, she’d very vigorously shake no and say “NO NOT SUPER JUST A BABY JUST A BABY!!!” She’s hardly solemn, it’s just that she’s just a bit more attached to the frameworks in life that are already set up. In the family, it’s sort of assumed that she will go with the flow a bit more, ie, no capes, and that this might make her a happier person overall.

I think that I’m not making her out to be the delight that she is. In the face of Beth’s illness, the whole family would have likely scalped one another already if it weren’t for her. I don’t think she’s aware of the pressure of keeping us all cheerful . However, she’s beginning to understand that her mother is very ill, judging by the fact that she says things like “Some mommies can walk. My mommy doesn’t walk.” But this is a new phase, and exploratory. At any rate it hasn’t hit her like its hit her brother, who has lost his mom’s constant company and also, all of the services which frankly kids need and expect. But little niece is better able to understand her mommy’s speech than almost anyone else. She LOVES her mommy and tries to climb all over her. She also wears very precious pink clothing along with spiderman socks and a Darth Vader Mark. So I guess she’s not that linear, yet.

Anyhow many weeks ago we had a family outing to go apple picking. It was fantastic. My sister and her husband and their 2 kids and my husband and I took a ferry from Rocky Hill over to Glastonbury. If you haven’t seen this part of Connecticut in the fall, you’re missing out, because it’s basically when it was designed to be showcased. Old colonials in excellent historic colors with wavery glass panes in the windows and pumpkins in the yard, winding roads and hills. We took the “ferry,” which is a slatted thing that can hold about 3 cars and costs about 3 dollars and takes about 3 minutes, across the river and wound around more through Glastonbury to the Belltown Hill Orchards.

My sister had come up with the agenda for the day. It was great to get out but she wasn’t going to be able to apple pick or navigate the terrain of the trees in her wheelchair. She stayed in the car while Matthew and her husband took the kids on the tractor around to get all of the apples. I took a short tour with them and then went back to hang out in the car. They continued on picking Empires and Fujis. When picking, my nephew kept telling people “you can’t eat any until they are washed or paid for!” which is a rule that no one else really followed. (I, for one, hid to eat an apple without reproach.) Afterwards, in the car, we shared apple fritters, then went out for slices of pizza at Luna Pizza in Glastonbury.

We brought a zillion apples home to Brooklyn and then make THE MOST DELICIOUS PIE ever. Well, my husband made it. Pie has a lot of rules surrounding it — all of baking does — so I mostly undertake the cooking of savory meals, and leave the pie to him.

What I want ot talk about is my husband — who is a very reasonable, logical, reporter type — and his interplay with the kids but specifically my nephew, but that is for another post.

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