Monday, July 26, 2010

In Which My Day Starts Out Great And Completely Tanks, And Now I Don't Get To Go To Disneyland

This was going to be a post about how I spent all of today getting ready for our upcoming road trip.  I went to the library and picked up a theme box on travel as well as a book for Connor about California.  I drove to Half Price Books and picked up the music I consider a requirement for a road trip of this caliber; music I remember from the road trips I took with my parents.  It's not a true road trip, by the way, unless you at some point find yourself barrelling down the highway belting out the lyrics from Steely Dan's "Deacon Blues"**  And I was going to talk a little bit about the crazy road trips I remember from growing up, like the one where we went something like 100 miles out of our way because there was a road cut we wanted to look for fossils on that had a particularly rich deposit of Trilobites.  It had green rock because of the fossilized Trilobite poop.  I am totally not making this up.

Anyway, so that was what I planned to talk about.  And then this evening Connor had another seizure.  This is his third in the past week and a half.

Fact Number One: No matter how I spin it, I can't justify taking him on this trip. 

This was only a forty-five second one, and he was only paralyzed for about five minutes afterwards.  And I only had to give him two breaths before his system rebooted and he started breathing again.  But this is only four days after his last seizure, and the possibility of them being breakthrough seizures due to the medication change doesn't lessen how dangerous they are.  He's been on the full dose of medication for two days now, and we're only a week away from when we were supposed to be leaving for the wedding.  We'd be gone for ten days.  If this trend continues, he will have at least one seizure while we're in California; potentially on the highway and between towns.  Even if Jeremy were to drive down with us, it just isn't a good idea to leave on this trip knowing the kid is going to have a seizure in a different state far, far away from his doctors and medical records.

Fact Number Two: I am horribly disappointed about this.  I cried.  Seriously.

I had no idea how much I was looking forward to this trip until I realized it wasn't possible to take it.  I spent the whole day thinking about how fantastic it was going to be and reminiscing about all the great road trips I took with my family as a child.  And I want to make those kinds of memories with Connor, and it sucks that it's not going to happen, or at least not right now.  The rather large portion of my brain that still acts like a four-year-old spent a substantial portion of this evening stomping around screaming "NOT FAIR!!!"  I mean, everybody else gets to take trips like this.  Why not us?  And we were going to do things.  Fun things.  We were going to Disneyland, for Pete's sake. 

I can't even take the road trip without Connor and go to Disneyland by myself.  Which of course would not be as fun as Disneyland with Connor, but hey-- it's Disneyland, so I'm pretty sure I could have some good times there even if I don't get to have one of those awesome passes that lets you cut in line (believe me, there are some perks to having a child with special needs, and that is a big one).  But Jeremy has to work, which is why he wasn't going on the road trip with us in the first place (he was planning on flying down for the wedding on the weekend) and so without me there no one is available to watch Connor.  I'm still going to the wedding, but now Jeremy is staying at home with Connor and it's me flying in on the weekend and then flying out the next day, rather than getting to drive and do all the fun stuff like spend extra time with family and visit friends and go to the Monterey Bay Aquarium and the San Diego Zoo and Disneyfreakin'land. 

I know.  I'm whining.  I'll get over it.  In fact, I've already taken the first steps to get over it; I went and did a really hard workout, and then I drove to the grocery store and bought myself my favorite comfort food for dinner: SpaghettiOs.  And no, I have no idea why as an organic-loving, CSA share-buying, healthy-eating type of person I would have SpaghettiOs as a comfort food, but I'm sure it says something deep and meaningful about my psyche.  Feel free to analyze.  At any rate, I got those and one of those fizzy bath balls and also a very large portion of chocolate, which is absolutely essential to my mental health as well but probably says less about my psyche and more about my waistline. 

I already ate my SpaghettiOs, and after I finish this I'm going to make myself a cup of tea and haul it, my chocolate and a book into the bathroom, where I will be taking a long, long, fizzy, scented bath.  And then I will make Jeremy give me a foot rub, and in the morning things will look much rosier and I'll be able to take a deep breath and start canceling all of our hotel reservations and trying to find myself a last-minute plane ticket. 

But . . . Disneyland. 



**  ". . .drink Scotch whiskey all night long, and DIE BEHIND THE WHEEL."  I capitalized "die behind the wheel" because you have to scream that part.  It's very important for creating appropriate road trip ambiance.


krlr said...

I am so sorry! I hate posting comments but I just finished reading all your archives & I've never seen you crack - that it was over Disneyland just makes me luv you more. If I could send you & Connor some mouse ears I would.

[OK, maybe not "crack" but actually write the words "not fair" which of course it isn't but that's what spaghettios (or in my case, red wine) are for...].

xraevision said...

Aw, sorry, Jess. This is really crappy news. I thought you were so optimistic and brave for taking Connor on a road trip, but I wasn't surprised because that's your norm, and I was looking forward to your stories. I think you're doing an incredible job of leading a relatively typical life, even though Connor has special needs. You never make excuses for not being able to do all kinds of fun things that might seem risky to other parents with atypical kids. Still, I totally understand wanting to just get away and do regular family things, but not being able to.

Robin said...

((Hugs)) Jess. I am sorry to hear you won't be able to take the trip you were looking forward to. You're right - life is totally not fair. No one deserves a fun adventure more than you guys. I hope the meds start doing their job soon.

Julia O'C said...

Nooo! Oh, Jessie! You have every right to whine to about this! I'm so disappointed for you. This just completely stinks. I mean, I'm very happy that this seizure wasn't as horrible compared to some of his others, but means canceling your trip and that's awful.

I'm so, so sorry.

Kristin said...

I know how disappointed you must be, but in the long run you'll be much less stressed out NOT pushing Connor and his new meds. Maybe after Connors seizures settle down, you guys can plan a trip to Disney that Jeremy can go on too!

Herding Grasshoppers said...

That just stinks.

I'm sorry,


Julia said...

Oh, what a bring down -- and I'm sorry he had *another* seizure. Well, Disneyfreakinland will still be there when you and Connor are ready for it. I really really really hope the new meds kick in soon and these seizures come to an abrupt stop.

I'm usually a health nut, too, and I *do* know how to make mac and cheese from scratch, but for some reason when my world bottoms out I feel the need for the boxed stuff with the glowing orange powder that looks like some nuclear byproduct. I guess the small act of rebellion is strangely comforting. I hope the fizzy bath was restorative.

Bronx Cataldo's said...

poor Connor and poor Mammy. I know your fears about travelling on your own for any distance. Last year we went to Myrtle Beach SC and we didn't even know if we were going until that morning. We were somewhere in North Carolina when Finny decided to have mother of all mothers of an Infantile spasm seizure and it was pouring from the heavens. I hop in the back with him and start saying the rosary as I give him diastat. It was 8 minutes of hell because I was out of my comfort zone ie not at home. We got there fine and had a great week. Our Finny doesn't sweat either and lives in AC with only a nappy on.

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