Thursday, January 13, 2011


Panic starts to set in with some folks after day...say 5 or 6 of no entries coming in. The 'OSM' needle (that's the 'Oh Shit Meter' in case ya didn't know) gets up there into the red zone and alarms start going off, whistles blow, I guess maybe a bunch of S.W.A.T. guys start leaping out of helicopters and busting down doors and shit in their brains.

Well, maybe that's an exaggeration, but it's a freakin' COOL exaggeration, yeah?

Truthfully, I've been a WEE bit more melancholy this week than usual. Can't put my finger on anything specifically. Nothing overtly bad has happened. Not to me anyway. I'm not swimming with any floaters wondering what the hell they are or anything weird like that...just have the winter doldrums I suppose.

Doesn't help that I've got a slight cold and Bennett has one too. Besides...that'll pass. Though my throat is beginning to swell, and since Strep seems to be making the rounds at Carter's day care...AGAIN...well, I keep missing that bullet, but I can only go Matrix for so long with that before eventually I'll get hit.

We've had an unusually high level of tension in the house of late. At the end of December, our Home Health Aide left for Nursing School.

Since, she has not been replaced. The extra strain has been formidable. Which I find interesting, because especially near the end, when the aide was calling out a lot more, showing up an hour, maybe an hour and a half late I was under the impression that not a lot of good was coming from her being here.

I might have misjudged that a little. There clearly was some, I just expected more in the way of showing up and being on time and being a LITTLE bit more of a self-starter instead of always having to be programmed. But like I've always said. I'm new at this. Maybe that is the best that you CAN expect from a HHA? I don't know. HELL...I don't even know what to expect.

What I do know is the strain on the two of us is showing. Clearly.

In a perfect world, I wish someone could be here that not only watched Bennett, but TAUGHT Bennett at the same time, worked with him, helped study his behavior and ours and helped us learn how to help him. But that's a perfect world.

That doesn't exist.

There is some additional crust on my spirit right now, some extra heaviness in my there are others in FAR more dire straights right now. I think that maybe this has kept me from being able to take a lot of joy from anything lately.

I should point out that Austin, one of our Infantile Spasms kids, will be going into surgery VERY soon, so keep an eye on his progress. I know that's been on my mind a lot. I don't know why, but whenever the new kids start down Surgery Road, I always get weird. Why? No idea. I'm sure there is something to that, I'm too tired to dig. Get Sallah to do it.

And then? There is Matthew.

Matthew is a local boy, who I only know about because Jen's cousin knows his family, otherwise my path in life probably would not have intersected with his in any way. I do follow his CarePage on their hospital website, though I don't comment much if at all. I never know what to say. heard me. Yer thinking...How in the world can YOU not have anything to say? Well, because Matthew's story is a difficult one to even write about. I won't even go into much detail here, but I will say that his story began with a brain tumor, a nasty one, in 2006 I believe.

He and his family have been battling it ever since. Craniotomy, radiation, chemo...there are times when it appeared that they had achieved total victory only to later find something had re-surfaced or some aspect of Matthew's condition had changed.

I'm not telling his story very well at all, I'm piecing together what I know from their site, what I hear, etc. I, very sadly, am not the type of person who has the balls to drive down to Nationwide Hospital and visit the family. I don't know them well and even though I know Angie it might just creep them out. I am essentially a stranger.

See, that's where Matthew is right now. At the hospital here in Columbus.

This time however, he will not be leaving.

The family is aware of this, and Jen, Matthew's mother, writes updates on the CarePage as often as she can. They are...heartbreaking, as you would expect. I simply cannot perceive the agony of what these parents are going through, have gone through, now and over the past several years.

She updated the CarePage yesterday, letting us know how Matthew was doing, etc. Her last sentence hit something in me, it was the endpoint on a day that really found me in a strange place.

'There are no words to describe how hard this is.'

Yeah. I can't imagine that there are.

I was so...humbled by that sentence. I'm so dumbstruck by that family and their experience.

Not an hour earlier, I was balls to the wall crying, a sobbing mess. My eyes swollen, my face red, my cheeks covered in tears, I did the best I could to muffle the SOUNDS, but the visual evidence was still there. So even though I had tried to to keep it quiet as luck always has it Jen walks in and catches me at the tail end of it and wants to know what's wrong.

Ashamed and humiliated, I had no choice but to tell her.

'I can't find my Velcro Tape.'

Before you start asking me for my dress size, I do have an explanation. Bennett had been home sick all day. My nerves had been pushed to their limit already. I've also been sick with some kind of stomach bug. Earlier, I spilled sauce all over myself. The Nurse who was supposed to come re-certify Bennett for this Home Health Aide thing was a no-show but had someone else call to tell me that she'd be here 5PM tomorrow but then that person hung up the phone BEFORE I could say 'Um, Bennett WON'T be here at 5 PM tomorrow though...'

Also, found out that at Bennett's school his Speech and OT was still weeks, probably months away from starting, and mind you, he was put on the 'waiting list' to start these additional therapies there as early as July of 2010. I was asked if I was still interested in these therapies. A headache started at that time. It built throughout the day.

Remember in Indiana Jones and the Temple of Doom when that poor dude had his heart ripped out by Mola Ram, the villainous leader of the Thuggee? John Williams has this wild drumbeat music playing in the background of that scene, that build and builds and builds, getting louder and louder and louder, and the beauty of it is that it is so seamlessly interwoven in that you are barely aware of it as you watch the scene unfold.

But...if you ever were to happen to listen to the original score, without the visuals there, it is truly horrifying and brutal on your ears and that's exactly what my head was feeling like all day.

I was half hoping to see Mr. Ram and ask him to rip my brain out of my head for me.

Then I find out Bennett has a new activity. He finds great joy in opening the refrigerator door and slamming it shut. The bottles and other object make such a delightful sound that he finds so funny that he laughs and laughs and laughs. Oh MAN is it the funniest shit he has ever heard in his 3 years of life. He can do this forever.

Last night, early evening, he seemed poised to do just that.


I was going batshit crazy. BUT...yes, I am not as dumb as I might appear, despite my tendency to showcase boobies. I was prepared for this. I HAD PLANNED FOR THIS.


I knew that, one day soon, he would figure out the refrigerator door and that I would need to be ready for it and I would need to have a solution on hand to be able to install a human-proof device that would keep shortness from being able to open the door to the magic kingdom.


I even have a special plastic bin in the basement labeled CHILD SAFETY EQUIPMENT with all the things in it that I need for 'proofing' the house. Soft edging, door handle stuff, all that crap.


I went to grab the thing I had bought for the refrigerator door. It wasn't there.


I looked a few other places. Couldn't find it. OK, I'll use the Velcro strips. Temporary solution but it will at least stop the bleeding.


A few months earlier, I had bought a roll of, well not strips really, essentially a roll of Velcro 'tape', that I used to bundle together a lot of the wiring around the house to keep Bennett from getting all tangled up or interested in messing around with any loose wiring or cords.


Couldn't find the Velcro tape. I'd just had it out. Couldn't find it. Looked around. Looked a lot of places that I figured it might be.


Nope. Nada. Nowhere.


Levies break. Water everywhere. I just couldn't take it anymore.

But Jennifer's question was legitimate, despite the fact that she, and rightfully so, just as I am sure you are doing, she asked it in the middle of trying to choke back her giggles. Yes, she thought it rather silly of me to be crying over my inability to find a roll of Velcro Tape.

I suppose it was.

I slid back from the kitchen desk and pulled out each drawer. I stood up and opened up the cabinets. Each was stuffed, and I mean stuffed, with papers, objects and various bits of other junk. Most of which had no business being there at all. It was a fucking MESS. You could not make heads or tails of anything.

'This is why,' I said. 'I hate that this is what our life has become right now. All we ever have time to do is stuff our shit out of sight or just make piles out of all of our crap. We can't organize anything, we can't keep track of anything. I couldn't even find Bennett's IEP, I had to ask for a new one! We never have time to do anything but deal with today, so how am I supposed to even figure out what I'm going to do about my tomorrow? Our tomorrow? I have no 'real' job, no idea what career path to take. I have no plan, I have no order. I can't hear myself think half the time and I'm so out of whack with everything that I can't even find a fucking roll of VELCRO TAPE!!! I shouldn't even be looking for Velcro Tape in the first place, because I bought a fucking thing for the fridge to TRY to plan for this and my head is so far up my ass I can't even remember where I put the fucking thing because I was too damn stupid to put it RIGHT into the bin the minute I walked into the front door with it and I probably set it down somewhere instead because I was distracted by whatever and now who the hell knows where it could have ended up? How in the hell am I supposed to take care of this boy and you and this family when I can't even take care of myself?'

We just looked at each other. We were both suddenly very, very puzzled.

It was

At that moment, we both realized that someone had decided not to slam the refrigerator door anymore. Bennett was instead FAR more entertained by standing there and watching the two of us. We couldn't help it. Seeing him watch us, smiling like that?

We just laughed. What else can you do, really? At the end of the day, you recognize that maybe some things aren't so overwhelming after all, even if they sometimes feel that way. You have to pick and choose which things you are going to go crazy over, and which things you are not. Plain and simple.

And this was an EASY day, relatively. We've gone through and will go through worse. If you try too hard, you can really drown yourself thinking too much about how you are going to fix all of life's problems in a day. can always try to take it one drawer at a time. It's very important to keep that kind of perspective.

Not just in the Special Universe. In ANY Universe.

Especially when you then sit down, less than an hour later, and read the words written by a mother experiencing a level of pain that is unable to be measured by any standard imaginable. How insignificant everything else really is, when you compare it to the staggering tragedy of a parent watching their child slip away from them, day by day.

'There are no words to describe how hard this is.'

Every molecule in your body believes her.

Every. Single. One.



  1. **sigh** for your friends, and for you guys.

  2. I'm sorry. For Matthew's parents, for you, for Jenn.

    But laughter will save you, at least.

  3. Great, great post. I so need perspective like that...

    Matthew and family: peace to you.

  4. I am so behind on reading and commenting.

    I am so sorry for your friends and can't imagine what I'd say or how I'd react.

    As for the IEP, I always ask for a digital copy because I KNOW I will lose the hard copy, multiple times and have to re-print.

  5. I'm sure you know this, as you seem quite confident in your manhood, but there is nothing unmanly about bawling over some velcro tape. It's especially therapeutic when combined with laughter at the madness we live every day.

    I'm so sorry for little Matthew and his parents. The PICU is about the most dreadful place I've ever been.

  6. Velcro? VELCRO! Sorry Ken, real men cry over duct tape. Velcro?

  7. Loved this post.

    And listen...I hate...HATE...when people come along read a post that sucked the guts outta me and then try to fix me. And yet...

    The whole finding an aide who will both care for AND teach Bennett is possible. Not easy. But possible. Although I'm not sure how it all works in your maybe I'm over-promising. Here, I have some freedom of hiring/firing here. I (finally...we went through many) found a college student who was majoring in Special Ed. She has been wonderful. I trust her with him AND she's enthusiastic to practice all her learning on someone. Lucky Trevy. :) If you have some flexibility in hiring...perhaps you could fish around your local colleges? Or even high schools? For students interested in this line of work...

    But then you do live in the middle of no-where...

    Maybe it would just be easier to move here. I know a girl...



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