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.

Infantile Spasms...

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.



  1. Were Carter and Austin separated at birth? the pant thing... the direction of the diddle. Two major things that bug Austin to no end!

  2. First the non-emotional...

    When I was a little girl, I absolutely could not stand to wear socks. The seam at the toes and any wrinkling in them made me crazy. They had to be a certain kind or I wouldn't wear them. Either that or spent all day fixing them and panicking about it. I'd scream, cry, and stomp my feet all day. I couldn't stand a top sheet in the bed either. If it wasn't "perfect" I couldn't sleep. I ended up just taking it off when I was a teenager because I obsessed over it. I have one now, but it still must be perfect before I can go to sleep. I've found myself getting up in the middle of the night fixing all the imperfections and wrinkles. What's my point? I've been reading your comments about Carter, and I'm curious whether or not you're getting seriously concerned about his behaviors or if you're just expressing frustration about it. It could be that he (like me) is just a perfectionist. It definitely carried over into many aspects of my personality today, but other than being a little annoying to myself and other people, it hasn't been incredibly significant. And before I stick my big size 8 in my mouth any more, are you concerned or just venting?

    And as far as the emotional goes...

    I think that will require an email. Is the email on your profile good?

  3. Jen:
    Very, very interesting. He also freaks out over logos on shirts that feel weird on his chest. Length of sleeves if they are not absolutely right. He will not wear socks that go above his ankles.

    I am concerned. I am concerned that he has Asperger's. I am also concerned because I am not kidding about how much he fiddles with re-adjusting his package so that it points up not down. So often I have been pulled aside by every day care teacher and his Kindergarten teacher and I am concerned that if he doesn't learn to accept that it is supposed to hang down that there will be problems. I also frankly fear that he will start to get relentlessly teased, and the kid has enough self-esteem problems.

    But what do I know? I've never had to deal with an issue like this before. But it really bugs him.

    As for my e-mail...yup, klilly@creatusmaximus.com is rock solid.

  4. Do you go for a walk everyday? I highly recommend it if you can. It is awesome, absolutely life-saving.

  5. The kissing on the lips... now that nearly brought me to tears.And the picture,of your beautiful boy,that brought a smile to my face.

    Ah,the roller coaster ride.Makes you want to jump the tracks sometimes,doesn't it?But we ride and we take the turns and the dips and we scream and try to catch our breath and we look to our left or right and we feel the kinship and the support of those riding the crazy ride,right along with us.

    Hoping the week surprises you and finishes off better than you expect.

  6. Hang in there, with the rest of us. We need you as you need us. I'm thrilled about the lip-kissing, and that boy of yours is just so damn beautiful. I look forward to hearing some more names for "The Club." Before the internets, I was a member of "Mothers from Hell" -- other mothers of kids with infantile spasms. We had a wicked newsletter and were all bitter and clever and grateful.

  7. Hello. Something that I get quite a bit from patients who have become friends, my mother when she could still communicate, my ex-partner, is the question/statement that all this work I do to be in touch with other parents around the world who have a tale of suffering, reading their woes, trying to be of assistance through words, understanding their predicament in addition to what I deal with, if that is really the smart thing to do. It's probably doing damage, they say.

    Well, you know the only proper way to get drunk is with a few of your buddies.
    Getting drunk by yourself is pretty pathetic because it's usually due to feeling sorry for yourself.
    Being isolated in your feelings, with less interaction than you actually need is kind of the same thing.

    The blog is uber important to reach out and connect, something which I personally did not realize until this last hospital stay with Segev. I'm slow like that. Reaching out isn't being weak, just as taking medication isn't being weak as long as it isn't the masturbation of the lone drunk. Now I know these things because I've opened myself to feel it, not only think it.

    Your ability to understand these depths of feeling, though, Ken, shouldn't make you believe that what you feel is ALWAYS right. Thanks to some brain cells doing their work you also have introspection to direct you and by Jove isn't it great that we live in an age where communication helps us understand a problem that could easily engulf our personalities and kill off the greatness of kindness and sharing?
    It's great to read your words and see who you are.


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