The new week begins, and my Mom and Ken went back home to Arkansas over the weekend. It was great having them here, but she can't stay forever. As of today Jennifer's mother and father are assuming the mantle and looking after Bennett during the day since we can't expose him to Day Care germs while he is taking the ACTH medication. His immune system is just too weak and we don't want to have him catch anything that will complicate his treatments.
But the fact is, Bennett has been on ACTH for over ten days, and it doesn't appear to be working to me. There was a stretch late in the week where his episodes were getting further apart and less intense...he was having one per day for a stretch of three days. But Saturday he had two episodes, and Sunday he had three. Who knows what Monday will bring?
Hell, no one knows if this ACTH will work at all, as I have said before that is the most maddening thing about this. To attempt to treat something that is so NOT understood in ways that are even LESS understood.
Is there still a chance ACTH will be what Bennett needs to stop his seizures? Maybe. I am just not very hopeful about it.
On Friday of last week in one of my many Internet searches for any information I found a forum that I joined for Infantile Spasms, though as many posts as there were there I could find no case of anyone who had a child who started IS in their FIFTEENTH MONTH. That's when Bennett's problems started. It is almost ALWAYS in month 4-7, even if and when there is a Cortical Dysplasia. (The forum is very difficult to navigate through though, based on my own forum management experiences I wish I could streamline it for the guy who runs it to make it easier for newbies to get info and for people to know where to actually go and post.)
Not to mention that finding any cases at all where a child had Cortical Dysplasia on that site or any other is very, very hard. I'm still looking when I can carve out the time, but I also need to be in a certain mental state to do the looking. You get that? In other words, I can't be looking at weaker moments or it just makes my mindset that much worse.
See, I wake up with this grapefruit sized pit in the center of my stomach. I shower with it, I crap with it, I shave with it. I carry it with me when I go to the Post Office, I sit with it in my chair while I do my regular day job work from here at home. It is with me when I watch Bennett play and laugh and giggle and do normal everyday stuff. It is with me when I watch him have 27 seizures in a row for five minutes and stare at me blankly during each and every one. It's with me when I kiss my wife and kids goodnight and it goes to bed with me and sleeps inside me. It pokes at me a lot during the middle of the night. It wakes me up early.
And it is always there.
What I want is an MF-ing Moment. You know what that is? It isn't what you think it might be.
In 1977 a little film came out called Star Wars. I could write a full, long, tedious blog about how that film changed my life, but I'll spare you that for now. If you never saw the film, and I have met one or two people in my life that haven't, you really should. Beyond the spaceships and the aliens and the laser swords and junk is a damn fun and deceptively simple story. I say deceptively simple because you can enjoy it as just a 'boy saves the universe' storybook fairy tale, or you can examine all the subtext of how it fit into the end of the nation's angst of the 1970's, its religious overtones, its mythological elements, etc., etc.
There is a scene in that film that I have since come to call The MF-ing Moment.
It's been a tough battle in space over the Death Star, the Empire’s (The Bad Guys) ultimate Weapon of Mass Destruction. The Rebels (The Good Guys) sent some thirty teeny spaceships to fight the mother of all battle stations, in an effort to exploit a weakness in the station’s defenses. Most of the good guys have been blown to bits, and our hero, Luke Skywalker, is running out of friends as one wingman bails and the other gets blasted. Racing to his destination down a seemingly endless trench to a nearly unhittable exhaust port that he has to shoot, even his trusty on-board robot gets smoked in a hail of debris and sparks by Darth Vader, the galaxy's most terrifying villain, who is in his own spaceship and hot on Luke’s tail.
Just as Vader aligns Luke’s ship in his targeting crosshairs and presses his shiny red button to scatter Luke’s atoms across the stars, Luke’s friend Han Solo comes through and his ship, the Millennium Falcon, comes screaming out of the shining light of a nearby sun to save Luke’s ass. Han shoots one of Vader’s wingman, forcing the other wingman to wig out and swerve into the wall of the trench and explode, but not before clipping Vader’s ship and sending it spinning out of control into the blackness of space.
THAT’S The MF-ing Moment, The Millennium Falcon Moment, that moment when it appears all hope is lost and then, suddenly, you get your chance to take a shot at saving the universe, and that’s what I want for Bennett.
Now I know that isn’t going to happen. I know life is not like that.
And even if I DID get that moment the likelihood is that anything born from it would only be temporary. Life imitates art. Art imitates life. Because if Bennett’s seizures were to stop today, if he had none at all for the rest of the day, that doesn’t mean they wouldn’t come back tomorrow. It doesn’t mean that the cause of his seizure symptoms would be fixed.
Yeah sure, the Rebels blew the Death Star to hell, but then the Empire came back and bitch-slapped ALL OF THEM in the next movie. But at least in the movie there was a brief period of time where everybody was happy and got medals from Carrie Fisher in a super hot dress.