Most of the time, when people talk about a serious illness, they don’t talk about the collateral damage. I don’t mean the other physical problems that being sick can create, aside from the immediate symptoms. I mean the way being sick affects everybody around the sick person. The stress, the worries, the changed dynamic of relationships — you get the picture.
Well, if you read this space, you know about collateral damage — for a while, it seemed like it was the only thing I was writing about. Sean first came down with Leigh’s disease almost eleven months ago, and to say it’s changed our lives would be an understatement. Even as he makes his slow recovery, we’re having to make a constant series of adjustments to assist it, to keep our family together and healthy, and to not lose our minds. Nina (aka the Supermodel) and I are adults, though — we can sack up and deal with it.
Our daughter Charlotte, however, is not an adult. In fact, she turns 9 in a couple of weeks. And it’s hardly been all Skittles and root beer for her. which is why today was so important.
Charlotte may be only 8, but she’s nobody’s fool. She jumped from third grade to fourth grade in the middle of the last school year, and continued to get highest possible marks; in fact, her school (which runs K-12) named her Student of the Year, even over any of the high-schoolers. So she recognizes that Sean needs a whale of a lot more attention than he did a year ago. But she’s also noticed where that extra attention he’s getting has been drawn from: her. And, with that awareness of fairness/unfairness that most kids seem to be born with, she’s less than thrilled about it, even as she understands the necessity.
So a little at a time, we’re trying to make it up to her. It’s mostly been bits of this and that — letting her stay up and read after her normal bedtime of 8 p.m. Allowing her a little more use of the computer (mildly monitored). Soliciting her input on family activities. But then, these are all things that we’d normally do as she got older. What she’s really been craving — and has been hard for my wife and I to give, because of Sean’s needs and our own exhaustion — is quality time.
Today, she got quality time. With a vengeance.
Most Tuesdays — three a month — our friend Julie the respite care nurse (an old family friend, known to the kids as “Auntie Fun”) comes over to take care of Sean. Until Nina and Charlotte’s school finished its year a couple of weeks ago, that meant I got a partial day off to rest, recuperate and read. With the end of the school year, we decided to make those Tuesdays “Charlotte days” — beginning today. Want to hear what we did? Of course you do, you’re reading this blog. Our magical mystery tour left home a little before 10 a.m. and stopped at:
- Barnes & Noble. Now, I may have made my last purchase at B&N, as I don’t like dealing with the cashiers — the general surliness, the constant badgering about rewards cards (rewards cards are a pet peeve of mine, as is being noodged by salespeople; the combination is on my permanent “do not want!” list), the way they dump my receipt in my bag without even asking (most places ask, which I like since I always put my receipt in my wallet so I won’t forget to enter the amount in my checkbook). Plus, at my local B&N at least, they don’t do much to keep books in any order, which can make it very hard to find what I want. And Amazon is just so much cheaper. But if you’re not planning to buy, it’s a great place to hang out, and Charlotte loves sitting in the kids’ section and reading anything and everything. Which is what she did for over an hour, while the Supermodel flipped through a collection of Zits cartoons and I checked out the 2010 Bill James Gold Mine annual. (Which I plan to buy. On Amazon.)
- John’s Incredible Pizza Company. John’s Incredible is a small chain (10 locations, all in California), so you may not have heard of it. But imagine a Chuck E. Cheese restaurant. Now imagine that it’s three times the size, with more-than-ample space to move around and enjoy yourself. And not so loud that you can’t have a conversation. And has five different theme rooms to eat in, all clean and well-lit, separate from the games area. And that it not only has pizza that doesn’t taste like plastic on cardboard, it has a wide variety of pizza, delicious pastas, soups, salad, breadsticks and desserts, all served all-you-can-eat buffet style. Now you have John’s Incredible. (Franchises are available.) Nina and I had been telling Charlotte for some time that John’s kicks Chuck E.’s butt and steals its lunch money, but she didn’t quite believe us. Now she does. She also played us four games of air hockey and won three. I let her win once, then thought better of it, played all-out … and only got her by three points. She’s going to be whipping me on a regular basis pretty soon — she’s already whipping Nina. I look forward to it.
- The Holiday Cinema. Because you see, Toy Story 3 is out (you probably heard, right?). Charlotte has seen, I think, every single Pixar feature film (and owns most of them), so this was kind of a no-brainer. And we’d been prepping her for weeks, even buying her the first two movies as a reward for several hours of help she gave me cleaning up brush and branches in the back yard. Well, it did not disappoint — almost all of our old favorites were back, along with enough new ones that if it were a book, it would require a dramatis personae at the front. The villain is not who you’d expect, and neither are the heroes who save the day. And the ending … well, I didn’t get all misty like I did ten minutes into Up, but there was a sniffle or two. Charlotte plowed through a $4 box of Skittles and gave it (the flick, not the candy) four stars out of five. I gave it five, and it WILL be under someone’s Christmas tree this December, guaranteed. (Charlotte’s favorite part was the attack of the pre-schoolers at the day care. The Supermodel’s and mine was every scene with the Ken doll, voiced by no less than Michael Keaton. If you’ve seen it, you’ll understand; if not, see it and you’ll understand.)
Charlotte’s outside right now, playing with her neighborhood friends and telling them about her day. And we’re planning more outings like this. Her birthday lands on a Tuesday next month (how convenient). And there are at least two upcoming movies (Despicable Me and Ramona and Beezus — she’s read almost the entire Ramona series by Beverly Cleary already) that she wants to see. So that’ll give us plenty of opportunities to spend time with her. Because it’s not just the sick kids that need time. So do healthy ones. And so do healthy parents.
To infinity and beyond …