Tuesday, March 8, 2011
By Any Other Name
I don't often cry when reading the many other blogs written by the Brethren and Sistren of the new community of parents who have kids with disabilities that I have recently found myself to be a member of.
Now that I think of it, I wish I had a catchier name for that group.
Sometimes I just want to call it the Fucked-Up Club. Cause there are times that's exactly what it is. FUCKED UP. Of course, if I called it the Fucked-Up Club by Ken and used the initials...hmmm...umm...well, then I'd be in a REAL pickle, wouldn't I? I'm pretty sure that URL is already taken by now.
Last night and this morning have been very difficult in Lillyville on everybody...no reason really, the entire family has just been on edge. But that edge ALWAYS has a double blade, which makes everything that much more difficult.
Yeah sure, somehow Bennett managed to find a way to climb on TOP of the television and nearly gave me a heart attack. And how can I possibly figure out every single thing he can get into/onto and how do I stop him from falling off of the ledges in the open areas upstairs because I know deep down that this is an inevitability, his climbing up on them not realizing it is a 15 foot drop...straight down?
And yeah he cold-cocked Jen in the face so hard when the Nurse was here that I heard it in the other room. And yeah Carter is still freaking out about the length of his pants touching the tops of his shoes and his junk hanging downward not upwards which means he fiddles with his diddle more often than most major adult film stars all day long it's unreal and yeah the front door leak has gotten so bad we are now looking at some major repair work to the house that we can't afford in addition to the major repair work to my teeth that we can't afford.
But at the same time we took Carter bowling for the very first time this weekend (though we had to do it without Bennett, which stung a little) but Carter had a lot of fun. And Bennett, this past weekend, kissed me on the lips for the very first time and it was a moment that I think I will cherish more deeply and remember more fondly than any other father would appreciate from their 'normal' child, and yesterday morning Bennett actually said, for the very first time, in Benglish, the word Applesauce, and he has been trying ever since, again and again, to repeat.
He can only get Apple out now, and sometimes he can get sauce out too. But he can't get all three syllables out at the same time. He did...the very first time he tried it. But after that? He just can't.
And yeah it sucks to see your wife almost in tears about that, as she struggles as hard as you do about the fact that some kids half Bennett's age can carry on an actual conversation, but you also have to comfort her and tell her that it could be worse, and for many it is worse, and Infantile Spasms is the nastiest, ugliest, most fucked up thing on this Earth that we have ever experienced as a family and we have to try very hard to focus on the good.
There are always major ups and major downs. It's one crazy ride. Lately? I think we've been in a little bit of a down. I know I have. I think maybe Jen has too. Spring will help her, I know that. It always does. For me? I don't know.
I do know I certainly have not been at my best of late.
All that Re-Lillification shit I wrote about last year I've lost sight of. I'm having difficulty facing some aspects of my life...again. Playing too much X-Box...again. And yet...even despite all the difficulty I am having with depression and anxiety...again, I am scheduling a wean off some of my medications. Mainly because I just need to feel what it is like to be off of them for a while. That might not make sense to those who don't take medications, but to those that do, it will.
And who knows...maybe Spring will help me as well (though a Home Health Aide that sticks around would help SO much more). Even though it is my most hated season of the year because with it comes an intense allergic reaction to all things that spread pollen and intense hay fever, swollen and itchy eyes, sneezing and the like, the change in weather is certainly going to be welcome. As will the opportunity to spend some time outdoors, doing some yard work or playing with the kids and running around with them.
A little sunlight on this pale flesh might do some good.
Anything beats spending so much time in the basement. I do most of my work down there, without much exposure to the outside world, and it can be a little depressing. Cold. Isolated. Not a great environment for a mind already prone to dwelling in the melancholy.
I usually don't take my computer down there, I come upstairs to use it, and that generally keeps me from staying down there too long. It's purposeful, forcing me to come into the light every couple of hours and not stay so isolated, not allow myself to linger so long with no natural light. That's a good thing.
So at some point I come up for air, get a beverage, take a break, write a blog, or read some, throw in a load of clothes...whatever needs to be done or I want to do (working from home does indeed have its privileges as well as its curses).
Maybe the last 24 hours have just been a little more raw than most. Maybe it's just my time of the month (men DO have cycles, if you ask me), or maybe I just identified with the words when I read them, but for the first time in a long time, a blog brought me to full-fledged tears...and it was Eric's thoughts about his son Segev's thirteenth birthday from his blog I am A Broken Man/You Can't Break Me.
Don't get me wrong, I cry often enough on my own, and have never been ashamed to admit that, I just don't cry often when I read. Oh sure, my heart breaks at least once or twice a day when I read blogs on the Blogroll over there on the right side of the page, but the tears usually don't flow.
I don't have a reason for this or a good explanation.
Maybe it is the act of reading, the act of paying attention to the words...reading comprehension, making sure I understand what is being said.
Because once tears start coming out, the interior of my glasses start to get a splatter effect on them, I can't see well, I have to stop reading, I have to wipe them off, and then I have to compose myself and come back to the reading.
This hasn't happened for a long time.
But it sure did this morning.
Christ...it is so hard to spit those words out anymore. I feel a venomous hatred towards them unlike anything I have ever known. And I hate them for being so innocuous. So innocent sounding. I hate whoever came up with the term. They didn't help us parents at all.
Trying to explain this shit to people...using words like that. It's impossible.
Anyway...I'm drained. But I can't help myself. It's hard not to feel pain for Eric, Danielle, Liz, Elaine, Holli, Sinead, Elizabeth, Craig, Jennifer, Melanie, Heather, Mike, Claire, Harold, Katy, Michael, Cyndi, Greg, Karen, Joyce, Keri, Sarah, Megan, Jamie, Ellen and on and on and on because I could just keep listing parent after parent after parent with a child who is suffering or has suffered from Infantile Spasms or something else equally as mind-numbingly terrifying.
Gonna be one of those weeks it looks like.
Time to gather some strength and strap myself to the yardarm.