So yes, let's take a look at this week, this one week in our lives here. I'd call it a roller coaster ride, if there existed a roller coaster that required both an oxygen tank for the highest altitude and a pressure suit for the subterranean low parts. Mostly, it's just a weird week.
Sunday. We started off the week with an all-nighter, in preparation for the Sleep Deprivation EEG the next day. Schuyler and I got through it with beverages, snacks, Cloverfield, Speed Racer and King Kong (the Schuyler "Good Parts" version, which basically skips the first hour, and includes the scary fish monster in the director's cut).
Monday. Well, you read about her EEG already. No seizures, but episodic abnormalities recorded. Neurologist said that he will schedule a new EEG, this one lasting 48 hours and requiring Schuyler to wear a mobile device for two days. After the unhappy ending of Monday's EEG, I'm not looking forward to telling her that she gets to do it again, and for, you know, forty-eight times as long. The doctor's office will call us to let us know when this new EEG will occur. If past experiences with neurologists are any indication, this appointment will be sometime in June.
Tuesday. Today, actually. The trade paperback edition of Schuyler's Monster came out. You went and bought a copy, plus two for your friends, right? No? Okay, well, here you go.
Wednesday. Who knows what tomorrow will bring?
Thursday. This is the day of my big author event at the Dallas area's extremely cool new independent bookstore, Legacy Books. (Beware, there's a loud thing on their website.) There's a wine bar, too. I'm just saying.
Which brings us to...
Friday. Turns out I was wrong about neurologists. When she gets out of school, Schuyler will be picked up by Julie, who will then take her to the neurologist to have her funky wire hat put in place for the weekend. I have no idea what it will look like, although I'm hoping it'll be something like this:
Schuyler will wear the funky wire hat until Monday, when I will take her back to have it removed from her no doubt slimy and vile little head. Then there'll be about fifty shampoos and as much ice cream as she can eat.
It was a delicate dance, telling Schuyler about her impending return to the EEG, which she ended up hating yesterday. She was resistant to the idea at first, but she responded very positively to that oldest parenting tool, the bribe. She says she's excited about it now, excited about proving that she can be a good girl, and a big girl, in order to claim her Prize. Her Bribery Prize.
Sometimes people ask me how I think Schuyler will react to the things I've written about her here and in the book. Perhaps I'm in denial, but I truly believe that she will read my words and know of my love for her above all else, and her grasp of the bond we share will only be strengthened by her understanding of how deeply that bond has run, her whole life. There is very little I have ever written about her that I think she might find upsetting.
But Schuyler, my love, my sweet darling girl, if you look back on this and read this entry from the vantage point of adulthood, I have a shameful confession to make. Do you remember the bribe I offered you in exchange for your cooperation in another pain in the ass EEG? The new Mac, your very first computer, the one I said I would buy for you when I got my next royalty check in February of this year, IF you complied with this new test?
Well, yeah. Funny thing. Turns out, I was already planning to get it for you anyway. Dick move on my part, I know.
28 comments:
I would love to have had the opportunity to read the equivalent of blog posts from my dad about how I was when I was a half-pint! Unfortunately all those "Letters to my daughter..." would be in hard copy if they exist at all. Written with a quill and sealed with wax, no less. ;)
Yay for Macs and ice cream and hopefully getting some answers more pronto than expected! Boo to blue sticky stuff and weekend long headgear.
I have a sneaking suspicion that, if the 48 hour head gear looks like the one in the picture, you won't have to bribe Schuyler...seems right up her alley, Rob.
Well you certainly let the cat out of the bag now, Dad.Don't you know there is no statute of limitations on tricky? ;-}
Barbara
I laughed aloud at that picture -- and it does seem right up Schuyler's alley! I hope the weekend goes well -- I think those portable EEGs are awesome -- so much better than hanging out at the hospital and feeling anxious. Good luck with it and congrats, again, on all the book stuff.
I laughed aloud at that picture -- and it does seem right up Schuyler's alley! I hope the weekend goes well -- I think those portable EEGs are awesome -- so much better than hanging out at the hospital and feeling anxious.
I had to get my son through what was supposed to be a six-hour neuropsych test, just sitting at a table in a boring room going through test books and answering questions... When he was FOUR. A remote-controlled dinosaur from Radio Shack was the answer, and we got through the test in record time!
Unfortunately there was no new Mac Mini announced yesterday at MacWorld. We were definitely in the market, too.
There is nothing wrong with bribery. It worked for me for my oldest's stomach test. I don't know what they'll give her to wear. One of my students has 48 hour tests and wears a cool doctor cap/do rag type thing with dinosaurs over it. Maybe they'd have a skull and cross bones option? Good luck with the test this weekend. By the way, I think she will read this as an adult/teen and know that she has a remarkable and loving dad.
Well... since you brought it up... While I enjoy almost all of your writing, your use of the word "broken" yesterday sure bothered me. Yes, your obvious love shines through brightly but for me, words (attitudes?) like that tarnish.
Hope she gets and loves her Mac as much as my son loves his (having made the switch from 13 years of PC laptops as "communication aides" to a Mac this past year)
Did I bring it up? Well, I've certainly written about it before.
One of those "agree to disagree" things, I suspect.
Hey, bribery is totally okay as long as you follow through on it (or make it semi-after-the-fact). Will there be link-up software available for her BBoW?
That "Back to the Future" image is totally funny and apropos - maybe it would be worth showing her the movie over the weekend to get her to be distracted from wires and goo on her. Here's hoping it all leads to answers.
Glue stuff in hair - from someone who's experienced it - lots of conditioner BEFORE shampooing makes it come out much more easily. Conditioner, comb through with the conditioner, rinse, more conditioner, then shampoo, and water as hot as she can stand it.
Hoping for the best, whatever that is, with the weekend's EEG.
Hmmm... maybe this is the opportunity for a new hair color too!
Thanx for pointing that post out Rob, it was from a time before I stumbled upon you. I appreciate your POV and while I haven't read all the comments, I'm sure you've likely heard mine already, scattered among the many you've heard. It has nothing to do with a god I don't have, it has to do with "Sometimes people ask me how I think Schuyler will react to the things I've written about her here and in the book." -- something neither of us can predict but likely your guess is better than mine. (Oh, and that's what I meant by you bringing it up).
Best of luck this weekend, all of you, and all the best in this new year.
You are an incredibly sweet dad. That's what she's going to get from reading this. What can I say? I have the gift of prognostication.
Hi Rob! I read your wonderful book over the weekend which, of course, led me to your blog and your Flickr page. Looking through your photos, I recognized your agent's assistant, Jessica, and realized that she and I went to college together. Small world!
I wish I had a record of my dad's thoughts and perspectives from when I was growing up! Schuyler's a lucky lucky girl.
Good luck with the EEG...and that miniMac is awesome!
Oh, and YAY for the paperback, Mr. FancyPants.
Absolute *best* kind of bribe--something you were *going* to do anyway, in return for cooperation on the part of your child regarding something they were going to *have* to do anyway!
Way to go, Dad!
Daniel has the same thing (BPP)as Schuyler, we've done many EEGs, unfortunately we've only have a couple out of the 10 that were just an hour long. The rest have been 24 hr Video EEGs stuck in a hospital room sitting in front of a video camera to see everything. They truly suck!! Tell Schuyler that Daniel knows how she feels and we will be getting our next on on 1-12. We also have no seizures right now but weird background stuff was said to always be there because of his PMG.
Personally, I think the worst-case scenario when Schuyler reads her book as a teenager is her going "...I did WHAT?" at certain scenes. XD I certainly cringe when I look back at myself at that age. Though I was not made of awesome like she is.
I don't like calling HER broken; her brain is, but Schuyler herself is the most put-together kid I have ever heard of. And she'll only get greater.
Looking forward to the CA book signing! If I'm lucky I'll be able to stammer out more than "I didn't drop it. I mean, I couldn't put it down."
You just crack me up. I love the humor you have in the face of the monsters. Your child will love your legacy.
I bought the book in hardback-- I need to make it to a North Texas sighing sometime. You guys rock.
Aw, she's going to know. She's going to always know and love you for the love you have for her. This little blog is just the icing on the cake. My mom calls my blog the love letter to my kids...yours is that too. A love letter for Schuyler in so many ways.
I also love the "But Schuyler, my love, my sweet darling girl..." bit. You're a great dad. xoxo
Ah, Rob. Your love for your daughter shines through on every post you write, hard-ass, wrinkles and all. She's your kid; she'll get it.
No prayers here, either, for all the same reasons, but your trio (and your swords) are often on my mind.
I will be thinking about you guys this weekend and hope that Schuyler will go with the flow. She seems like the creative kind of girl who will turn this experience into something fun and freaky. And - that kind of bribery is the best kind. Nothing wrong with that!
As long as it's a Mac your little girl gets, then it's all okay! THere is a ton of communication software out there that Mac's work beautifully with. Michele
It happens that we walked over to Book People on Tuesday. FFP found me in the coffee shop and said "Schuyler's Monster" is on the New Arrivals shelf." "Must be the paperback," said I. And so it was. It was next to some book about controlling feral children or something and showed a kid squealing. I should have gotten a picture. It's funny the company books keep sometimes.
Out of curiosity, is there anywhere I can buy a copy while using Paypal? Amazon hates Paypal with a burning, fiery passion, I think.
Iselyahna: Barnes & Noble's site takes Paypal. I looked it up on a whim and there it was. ^^ Price isn't as good as Amazon's, though... dammit, why won't THEY take that as payment?!
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