Tuesday, January 29, 2013

The Cauldron

I realize I put an end to one of my entries by mentioning the noise my tub makes. It was terrible of me to leave you in suspense. However, my life is all about suspense these days. I like to plan. I love to plan. In fact, the most wonderful thing about having things to do is the ability to use that calendar app-thingy on my phone and the cloud (ahhhhhh...I really don't know what that sound is) so that everyone in the cloud (ahhhhh...it's like angels or something) has all my plans on their calendar app-thingy. The cloud (ahhhhh...can you hear it now?) keeps us all on the same page. Look, listen, kneel, pray!

Not so much that last thing. That was weird.

Life, of late, has been all about things unplanned. Especially those things that make you raise one eyebrow and tilt your flabbergasted, slack-jawed head to the right and start a lot of sentences with out finishing any of them. "Ooooh, my..."
(hand over your mouth), "I need to g--" (point backwards), "I don--" (point in big sweeping circles), "None of that--" (universal no/stop sign), "You have got to be...." You either get too much time to get used to the unplanned thing or things or you get less than no time at all.

It's very much like having your arm cut off. Either a pole axe lops it off immediately in one blinding flash (that's almost never good) or it's surgically removed one slice at a time over two months (like maiming by uppercut). So, to update:

1. It is day 21 of BrainWatch. We went in and got Squib his glasses. He was very excited. Oh for joy! All I have to say is that was one day I was thankful for shopping carts and Walmart, but really only in that order. I know it's day 21 because I know the date of his MRI and about when I can expect results. Yes, I can predict the behavior of radiologists and pediatric geneticists. I am that good. Really, I've just been doing this since 2002. The quart of blood they'll need to do the genetic testing will be drawn then and we'll wait for those results until the end of time. First, no one really knows what all that crap means anyway. Not for realz. They're finding out new genetical whatsits all the time. Second, we're starting off with a discussion of possible brain tumors in a child of seven who has already had massive open heart surgery and has a brother with tetrasomy 18p (knowing the tetrasomy 18p part was inspiring, but mostly only panic inspiring).

So pardon me when I go mad-biochemist on you and laugh like Ed the Hyena every time the words "need" and "chromosomal study" end up in the same sentence. Especially without the word "free."

2. The heater in the Hobbit Hole is having issues. Yes, we renamed it again, but only because it is 'more perfecter.' Who is teaching Squib verb tenses and adverbs because that obviously isn't coming from me?!?? Oy. Anyway, when it dropped below sixty-five in here and the heating pad (that is supposed to convince my body that it really does have the electric blanket that BUDDY STOLE from me) shuts off, I start to wake up. Sorry for the screaming, but it was twenty-six degrees outside, so it got below sixty-five in here and I had every electrical thing capable of producing heat turned on and I mustered up a good solid sixty-seven. The diagnosis? The heater can't keep up.

This doesn't exactly baffle me as we only have a 60 amp line to the Hole (Hahahahaha! proof I really could be a teenage boy for a day. Nvm.) We also "might" have half the heater wattage we need. Not might. We do. When I over heard the AC/heat dude say that, I think my right eyebrow hit the ceiling and I wanted to jump up and down on my bed and scream, "I am going to strangle that scrawny. Little. Geophysicist. If I have to die to find him! We'll never need more power in there. We'll never run a computer lab in there with a farm of printers, a plotter, central AC/heat, a gazillion UPS's, and a hair dryer/microwave/TV/DVD player/etc. We would never do that."

3.The tub is officially The Cauldron. It doesn't boil or anything. However, it can get pretty darn hot. If you take a bath, though, and drag it out a bit, the drain under the tub starts to make this gurgling noise. It's a harsh, raspy, wicked, burbling hiss. Since everything is open in here, you can lay here at night and listen to the hissing from the drain and wonder when it's going to start emitting skeletons and all manner of evil (that's The Black Cauldron...I have a kids movie thing going here).

4. Door slamming. Currently high. Very, very high with no forecast of dropping off in the future.

5. Laundry, yes. Motivation, zero. Chances are it's clean, but you'll have to work to find it.

6. Sleep? Deprived.

8. (Accept it and move on. That other number is not to be named today. Apparently crossing your "#'s" (I dare not even type it) means they're for sure a "1" and not a "#" which is actually backwards but I don't go there with Baba. Instead of calling Wells Fargo she "won" a cruise to Jamaica by dialing all those faux 1's. Saints. Preserve. Me.

9. Cell phone? Still British. It will not spell words like "realise" or "theatre" like any other normal Texan. It has accepted y'all. I think it fractured something in it's psyche at that point because for the last week it's been correcting spelling and word choices. Putting 'so' in for 'do' or 'duck' in for 'luck' or 'luck' in for 'lake.' It's rather fond of 'duck,' actually. My absolute fave, though, was when I texted a (guy) friend of mine and he asked me to look something up. I typed "wait for sec" and sent "wait for sex." So I tried to right it and it tried to do the same thing again.

Don't even dare ask me about Siri that useless animal. "What can I help you with?" Apparently nothing.


Monday, January 28, 2013

Do you have a knife?

...in every pen/pencil jar in your house?

Mostly. Probably. Yes. They aren't the good knives, mind you.

But this is on your son's side of the bed.

Um, this is "the country?"

I hate it when people say that to defend their lifestyle.

Personally, I don't need it to excuse or validate my lifestyle. It is convenient, though. In the city, for example, knife weilding isn't as easy to excuse unless you're a professional zip tie remover or cable puller or carpet layer or some such thing.


Oh. So have you killed anything with a knife before?


Have you killed a person with a knife before?

Oh, good grief no!

What have you killed with a knife? What was the last thing you killed with a knife?

A pig.

Like a cute little pink piggie?!

No, like an ugly, black-and-brown, stinky, covered with red mud, charging potbellied pig.

No way!

It's a long story.

A potbellied pig is like a pet. You killed someone's pet!

Well, this pet liked to hang around with wild boar. It wasn't like attrition was aiming for him. Well he was, but just not...

You shot him.

attrition did, yes, and then I knifed him. The two shots in the head didn't kill him.


And then we ate ribs and sausage.

Next time I'm stopping at "this is the country." It's sort of like a do not enter sign for the macabre or demented.

(this was a conversation I had with a friend last year who came over for tea and was walking around looking at my new laminate flooring and spied a knife or three)

Sunday, January 27, 2013

Zits or Spit

I was so happy when I got to be thirty or so and it seemed like the pores on my face were starting to like me. After all, I had to spend fifteen years as a walking facial volcano. My parents would even attack my face on occasion when I was a teen. It was a little (read a lot) humiliating and took quite some time to be ok with.

Fast forward to this last fall when I thought I was becoming diabetic since I...wasn't fifteen anymore or even twenty or thirty...but forty (screeeeech) and was sooooo thirst I was drinking tap water like it was going out of style and started having the worst time singing because my mouth was so dry. Like, Sahara Desert dry even after a liter of water or so. I tried throat sprays, tea with lemon, special lozenges, sorbitol candies (if you had issues with them as a child there is NO need to repeat that disaster, believe me), and a few other things before the rheumatologist gave me Evoxac and said it would solve my little spit issue (which wasn't as little as I thought). "It stimulates glands so you might have some issues with your Crohn's," was all he said about it.

I thought, "Meh. Big deal."

What I should have thought was: "Glands. Salivary glands are glands. Hmmm...sebaceous glands are glands. Oh my goodness!!! This could be very bad! What's worse? Zits or no spit? Srsly?"

But I didn't. So here I am. Clinically, the correct answer there is still "no spit" given the effects of dryness on the mouth, etc etc blah blah blah.

So...glands...just wondering what else they can do to me when hyper.

Saturday, January 26, 2013

The Invasion

(obviously written in early December and never posted this is one of my favorite Squib moments)

Perhaps it's no coincidence that on Pearl Harbor Day I'm experiencing a minor invasion of my own. Excuse me, it's Pearl Harbor Remembrance Day (you brainless twit) according to Squib. The parenthetical was implied. Believe me.

We were in the car coming home from school when Squib asked, "Are we dunna be in de owffice?" Don't let that squeeably cute speech delay fool you. He's lethaly intelligent. Some day I'll have to retell our discussion of Genghis Khan. Speaking of Genghis, he asked about the "owffice" at least three more times before he sacked out in the back seat.

I promise you he wears his own self out most of the time. I don't even have to provide any activities for them as you'll soon see. This is true of both boys. Perhaps it's a subtle reaction to the way they started their lives on the wrong side of the odds and shipwrecked in hospital beds. Somewhere in their psyches they both have this mission to see and do EVERYTHING. So they both keep moving until they absolutely have to lay down. Which they do. Right on the spot. Sidewalk, driveway, yard, floor, bathtub, playground. It matters not.

"I need that and that and that pwinted out, pwease." Squib pointed to my Pinterest page as his feet dangled from my chair in the "owffice."

"Ok." I was a little surprised he was even fishing through there. But I do have a board full of things I do with the kids. He had apparently tapped into it.

"Den you need to move." He glanced at me cooly.

"Pardon?" I asked.

"Out. Move out." He swept the entire owffice with one arm. "How am I 'posed to build a mooseum wike dis?"

And then he started collecting every iota of everything that was even remotely touching the conference table and before I could even protest he carried it to my bed and left it.

"Wait, what? Hey!" I did protest. I just want that on the record. Then I wanted to protect my electronics before Dr. Demolition swept them into a pile and tossed them through the bedroom door. After that, the table was mostly vacant. Arguing with him was largely moot.

"Hey!" I meant to set him straight. Really, I did.

"Did you pwint out my ewves?" He looked at me expectantly. Not like overjoyed expectantly. More like the elementarty school mafia give-me-the-elf-if-you-want-to-live-lady kind of expectantly. He added *that smile* that has duped every female in Radiator Springs.

"Just you hold your little horses, there, Genghis Khan." Yes. I called my seven year old Genghis Khan. "Before you go killing all the civilians, get things under control. This is my house too."

"I know." He said. "And you get de bedwoom. Dere's TV in dere! Are my pages on de pwinter in de owffice in de Big Wed House?"

I nodded my head and he took off running which was a great time to roll my eyes. I wouldn't know the first thing to do with this goofy television. I haven't watched TV since 1997. All I really do is watch Netflix on my laptop and on occasion search for movies and DVR them. I don't flip channels or watch regularly scheduled stuff. Neither does he. We're just too busy doing other things.

So here I sit. On my bed with my belongings scattered about--not to mention the detritus of remodeling scattered about the West end of things displacing the rack of hang-up clothes and other items so that everything that's usually spread out is now crowded around the bed. The blank TV is staring at me and when I say I am "plotting my escape," I really only mean the five feet to the bathroom, but it's quite an obstacle course.

Squib 1 Mommy 0

Friday, January 25, 2013

Typhoid Maurice

I started coughing Tuesday evening. I thought I had escaped my yearly lung crud from Hades. Really. "That's all." I dug up some cough syrup that saw me through the last bit of lung garbage (probably expired, I know, thx) and took some and retreated to my favorite bed on the planet (because it's actually a bed) and started watching a movie until I dropped off a bit. I coughed. I slept. I coughed. I slept. Ad nauseum (kinda literally).

I felt right awful by morning and decided I might be getting ill. I was summoned by the occupants of the Big Red House for a summit on monthly expenditures and crawled through the door a little before ten thirty and waved the sign of the cross over the electricity co-op bill and took note of some checks written before making my escape again. I worked on balancing the ledger for the day (yes, the day, these people are sneaky) and continued to cough my head off. The formal thought began to form in the back of my mind that perhaps I really was officially ill.

I attempted to stay in good form for the day. I completed my usual tasks and chores. I even patted myself on the back a little bit, but by two o'clock I felt as though I'd coughed up half of a lung and I was thinking of my Wednesday night commitments with loathing. Only a smidgen better than "fear and loathing." Defeated, I canceled my follow-up neurology appointment on Thursday in favor of Dr. Carly the Saver of Persons Dead From Local Flora and Fauna. It's quite a title, no? She's earned it.

When Thursday arrived I when to Dr. C's place. They crammed swabs everywhere. I was flu negative and (drum roll) strep positive. Strep? Strep! It was surprising given I was rolling around so much garbage in my chest and my throat didn't hurt. Even Dr. C got excited about that one. My throat was red, but she thought it could be from the cough, but once I was tested positive she was amazed. She started rattling off the statistics of strep infection in the county over the last two years and, apparently, the last two weeks has eclipsed that of the last two years combined. She set me up with an in-office breathing treatment since she, "really (didn't) like the way (I wasn't) moving air in my lungs," stabbed me with a jump start of steroids and medicated me for everything under the sun: antibiotics, oral steroids, and cough syrup that required a driver's license to take out of the pharmacy.

I was sitting there, though, after I tested positive, and trying to put my finger on this niggling factoid that I couldn't quite access. She asked if I had been directly exposed to anyone who is flu positive. The answer is/was no. But she didn't ask if I had been around anyone who was, OH! I texted (it's a word, now, so you'd best get used to it) Buddy in the waiting room and told him I had strep. Baba had strep just two weeks ago. I should have gotten sick earlier, but it made sense. Then I got this back:

So NOW he tells me his glands are swollen and he has a low grade infection. It's so not funny I can't even muster a single feeling about it at all. Not even the frustrated desire to knock him in the teeth or shove him over the spillway. We have a houseful of people that are immunosuppressed.
This was when I *eversogently* smacked myself in the forehead. You see, when I was a little, little little Dad had an infection in his hip that was almost debilitating. In the absence of all other evidence to the contrary, the diagnostician treated it as though it were strep and he got rid of it. Consequently, my mother and I stopped getting strep throat infections as well. Put that in your pipe and smoke it.

About ten years after the hip strep incident, my brother and I started having what you can only call serial strep infections and my mother finally managed to impress upon our doctor that perhaps he should go the way of our previous diagnostician and treat Dad. Which he eventually did. I never got strep again. Until this week. At which point I pulled Dr. C aside and said, "You're not going to believe this, but there is a strep carrier with a low grade infection and seriously swollen lymph nodes in your waiting room." She made "that face," but rather than burn him at the stake, she did a swab test (positive, duh) and medicated him into oblivion whilst shouting to her nurses of tracking all the strep cases, this, maybe on a map, that.

I heard Dr. C scream at him when he tested positive. It was only half as loud as me screaming when I heard her scream. Fortunately, Buddy is mostly deaf.

I'm going to kill you, Typhoid Maurice!

Friday, January 18, 2013


This is just to say. Again...

I am no mind reader. I definitely cannot read yours. Whoever you might be. It should also be readily apparent that I can't even read my own.

We, the Group Conscience of Scat's brain are attempting to convert the information stored here into some sort of permanent fashion as opposed to, say, the bloody chicken scratches on the walls of the third ventricle. That must have happened the last time we tried to shunt Imelda into the spinal chord. Oops.

We apologize for any delays you may encounter. Please enjoy our rendition of Sweet Home Alabama for fife and bagpipe while you wait.


Thursday, January 17, 2013

I Was Thinking

I know. That's usually the point at which *something* happens and then *sometime* later I find myself *somewhere* and I'm not entirely sure how I got there. I literally kinda wake up and have no idea how I got there only I'm never really asleep and, well, that's all...the rest is real...

Where was I? Ok, so I was in my new tub. Just being in the tub is an epiphany in and of itself. You should try it. Try it without the water and with your clothes on because I'm pretty sure most of you don't want to know me any better than that. Also, the "casters" Buddy made for the feet are having Physics problems. It's really great mathematics and stuff to explain the use of them by saying that they distribute weight/force (semaaaaantiiics) across the entire area of the the caster, but when the caster is a porcelain tile (actually two of them in a layer like the pyramids only not as awesome) that's been injected with the dye(s) that makes it look like slate then the biophysicist in you should say something like, "How certain are we that this material is consistent throughout?" Also, given that the upper and lower surfaces of said casters are not precisely smooth (since they are playing like they are slate), "How flat are the surfaces of the casters?"

The answer to both would be, "Not very." And that could be "bad." I was reclining in said tub ('member?). Each foot (oh noes, I think the tub's name is going to be Peg Leg if we don't work hard at something else) is squarely propped on it's tile casters except for this one that isn't there. I know, I left that out. It's there, but it isn't a claw foot like the others. It was missing. We looked for a single foot on eBay and Craigslist, etc. They were both hideously priced and difficult to classify as to type of attachment. So Dad and I gave all our options a thorough examination, declared ourselves stupid (because you can't fix that), and went with option two. Option two was to lop off a hunk of caruan which we've been toting around since the mid-90's and stand the posts of the fourth foot on that. In the back. So you don't notice (but you know it's there).

At this point, I am still reclining. You know that sound you hear when ice is about to break and you're standing on it? "Tick." "Criiiick." It's a really crisp sound. And, apparently, porcelain makes a very similar noise. And this is the point at which I lost my mind.

I blame stress. It is conveniently located. I could also blame my friend Drea. She is conveniently located as well but we have a not-so-secret telepathy project we're working on. I think it worked. I really thought for a second that the tub was going to tip on that corner like it did the whole time it was being refinished. I had a shockingly, amazingly white but at the same time gorgeous vision of myself rolling...we'll call it west, ok?...and ending up like my favorite egg dish in a giant pool of water. And a momentary flash of Drea saying, "Well. (*sniff*) That was lovely." Then, she'd make that face.

So I started to laugh really, really hard and I bumped the tub and immediately woke up from my momentary insanity or telepathy (which sounds way better) and started to think about how I might get out of there because even though I'd be the one naked and wet and cleaning everything up in the middle of the night. You-know-who would still be cursing the placement of that (stupid therefore unfixable) pegged foot.

I decided I should check it before I got out. When I was scrambling around under the tub placing the casters and the peg the day before, I was told to push it more toward the far wall, but if you're actually seated in the tub, the two points where the tub sit on the peg, are exactly on the very edge of the block/peg now rather than the center (which was the goal of pushing it toward the wall). So, I sit here totally confused. They make rulers for this. And even though I could have looked at the casters to determine their state...I am pleading female-ish-ness so as not to be totally at whatever when we see what is up under there.

Pegleg. No. Tripod. No. Gimpy? Tippy? Ohhh cripes no.

For reasons I hesitate to describe, I'm leaning toward "The Cauldron." Just based on the noise. :)

Which Would You Rather?

It's a goofy game played my gamers in forums Internet-wide. Which would you rather? 1,000 bees or 1,000 ants? I'd say ants because I could brush them off and squash them more easily. A knife or a fork? Pants or a shirt? Hair or fingernails? Any two oddly juxtaposed things you can imagine and usually they're way more interesting than I can come up with.

So, which would you rather? Lose a finger and know now or find out after two additional months whether or not your child has a brain tumor. Well, two of them. It isn't that cut and dried, but so far, my nerves are voting unanimously for the "lose a finger" option. I would take that terrible drive back down to Texas Children's Hospital, wait in the waiting room, donate the finger under a local, wait on Squib's doctor, and take my bloody stump with me tumor or no tumor.  Add the 1,000 ants and bees, a knife, pants, and my hair.

I really don't care what it is because I've been on this ride enough times before to tell you that the very next thing I want to do is get off of it before it starts going any faster. We're already going fast enough that I'm not able to hang on to all the things I normally carry. Anyone who knows me knows exactly what I do when that happens. Haven't used that this week? Can make do without it next week. *pi-chong!* Don't even recognize that. *doooing!* That is still making that noise. *eerrrrr!* This is edible. *put in backpack* This is trash. *sweep sweep* This could be trash. *sweep sweep* This would be better if we lost it. *sweep sweep* I don't even know what this is. *sweep sweep*

Laundry? Yes, have some. Are you ok? No. Are you fine? As in F.I.N.E? Then 0.75 of a yes. If you mean fine = ok, then no. Dinner? That's why we have a freezer and a microwave. "Want to eat out? I'm sure there's a Happy Meal toy collection that's still lacking pieces. Maybe. "I'm sorry, were you asleep?" I'm not sure why, but a lot of people ask me that. Not just Baba. Sleep. Hahahahahaa.

I just need to know, you know?

Monday, January 14, 2013


Last night I got to take a bath in my fabulous new old claw foot tub. It is really a significant milestone for me. On par with getting to sleep in my own bed. Yes. That important.

For the first time since I moved to this corner of East Texas, it became possible for me and my kids to live in our own little Hobbit Hole (I like that name better) without streaking anywhere for baths, to brush teeth, or anything like that. With our toaster oven and microwave we could even make it a while eating some really triglyceride-laden stuff. And fruit.

So I took the first chance I had to soak in a redonkulously long bath. There were no kids here and I locked out the adults from the Big Red House. Buddy texted me nine billion times to see if I was done. I finally asked if he was the appointed bath nazi and he stopped.

Mostly, however, my plan for the evening was to stalk my workstation (who is also named Scat...I know...it wasn't me) and try to determine exactly why the little bugger was shutting itself down every morning. And by "morning," I mean between midnight and 5 a.m. So we're talking really, really early.

So there I sat.

I frittered away my time. I wrote. Balanced all the books. Looked for tax stuff. Munched a bit and at 3:23 a.m. (I know, right?) I heard the telltale "meep" of death that indicated the workstation was shutting down the hard way. Of course it did this when I was using the facilities, so I went running into the office to try and see what was going on. I didn't manage to catch it in the act before the driver for the multi-screens shut down. If I had a monitor from, say, the late '80's I'd know a heck of a lot more about this as I'd be able to see things much early in the boot down and boot up cycles. I was extremely articulate about my disappointment. RAWR.

So there I sat.

This is usually the time at which I realize I've wasted not only a night but most of the following day, so I was in a general funk about the issue and threw in the towel about the whole thing. I was texting back and forth w/a friend of mine who was working the night shift and another who was just in a different time zone and having lunch. I was much disgusted. I mentioned fixing the issue with a sledge hammer and was told it wasn't healthy. Forget healthy. I was shooting for therapeutic.

Then I woke up today.

Not everyone else woke up today. I was told by Buddy that around 3:00 a.m., a man that I had just started to get to know since October had a massive heart attack and died. They managed to get him to the hospital where they pronounced him dead. He had been in town at church just yesterday with his wife and grandchildren. It was out of the blue. No reason to expect it.

I can't honestly imagine or say that I know what his family is feeling or what they went through, but something sunk in me and got very still and quiet. Subdued. I know where he's going, so that's not the issue. Believe me, when it comes to places I want to go, I want to go Home (capital H). I also want to be with my kids, but I know where they're going to end up, too.

Still, when someone passes like this. Out of the blue I feel like we as a community have lost something. As if we're working (hard!) together and a soldier has fallen. How could we ever fill those shoes? We can't.

And what was I doing "around 3:00 a.m?" I was cursing my workstation for simply turning off without my permission. I was awake then when I'm usually not and that now seems slightly significant. It was certainly significant to me that while someone I knew was dying, I was arguing with a hunk of metal, gold, copper, and silicon. This level of pressure that I usually keep on myself suddenly lowered significantly and I rested my head back and thought...

...none of "this"...none of it is really that important.

Friday, January 11, 2013

Stuff--Part Dos

I'm not downplaying one child over another AT ALL. They're just different. So no mommy-bashing. Sometimes life just works out on a weird, off-kilter sort of merry-go-round spun by a very freaky clown and you get what you get. Welcome to Earth.

I love both of my boys so much I can't stand it. But this one, for some reason unknown to me, is so highly intuitive and compassionate that he loves me so much I almost can't stand it. In a good way.

This is for his "Got Milk" ad. I'm being totally serious. His idea. He saw Leonardo DiCaprio or some other male actor in a Got Milk ad and decided he needed one, too. Not bad for a first take.

Anyway, I'll start with the disclaimer that he isn't perfect. BUT. On the other hand, I can't count the number of times in one day that he kisses me on the forehead or the cheek. Or makes me cards or letters that tell me he loves me, I'm cute, and I'm pretty. It's completely true that if you hear that enough you begin to believe it. After the end of a 2nd disastrous marriage (on both parts), I was one of the most damaged people I know and this kid right here thought (thinks) I'm beautiful, cute, wonderful, and he loves me. He tells me when he likes my hair. He comments when I dress certain ways. Granted, he goes right back to his Lego's or dinosaur creating, but I actually do feel more...beautiful...because of this kid. For me, that was life-changing.

Recently he asked me why I was writing so much. I told him I was writing a book. He asked how long it was and I told him how long it was in pages and by wordcount. By the end of the day, every person he crossed paths with knew about it. He was genuinely impressed and actually the first person to be such an advocate.

It isn't something I'd expect of a child. Or even ask for. He just does it and will continue to do it whether I say anything about it or not. When I get migraines, he kisses my head really gently and tells me he prays for my head. And, believe me, I'm not entirely sure that God himself would argue with Squib. He's one determined little dude.

So, it was with a very unsettled stomach that I left Texas Childrens' Hospital last Friday after his annual Neurofibromatosis Clinic visit. I thought we'd count spots, do a normal exam, and they'd look at the "NF signal" from his MRI and send us packing. But Squib has also been having headaches, a mild change in vision, and weakness in one side. And apparently NF kids also are prone to other brain tumors and that might be what the signals are. So...more MRI's...(plural) and almost a pint worth of blood to be drawn for more genetic testing than is even decipherable (says this biochemist).

It took me until Saturday morning to gnaw all my fingernails down to the quick. Mostly because I wasn't exactly sleeping. I read two trashy novels whilst gnawing and even the prospect of someone's "glistening wet shoulders" didn't do it for me. And now we are on day nine of Squib headaches and I dare not contemplate the means by which "we" shall make it until March 11 (that's six months from the last MRI so we can detect growth speed) without going totally bats.

It's taken me seven years to walk into Texas Childrens' Hospital without breaking into cold sweats. And take this for what it's worth: I really hate to love that place. And I don't know if we're starting on a new journey or if this is just a preemptive looksee. But I'm the mother. It's like telling your kids not to touch. I have to feel everything.

However, that being said....sometimes you have to remind the fear of it's boundaries....

I will not fear. Fear is a mind-killer. Fear is the little death that brings total obliteration. Perfect love casts out all fear. (now is a good time to shut your eyes if "bad words" bother you) So get the fuck out of my house you malevolent bastard.


Thursday, January 10, 2013

Stuff--Part I

The longer I think about it, the more I find that I can't get over this one thing. Ok, two things if you're counting them as people. These two warriors I've been entrusted with. Fearlessly attacking life and everything in it regardless of risk to life and limb or whether or not they possessed said life or limb at the time:

Squib (left) and Beanstalk (right) in the park.
In this particular photo, Beanstalk is laughing about something that, to be honest, I didn't even understand because he said it in his native language--Klingon. Squib looks either seriously mad or annoyed, but really he was trying to refuse to laugh and a split second later he was busting a gut right along with Beanstalk. I'll never know what for. Blue is in the picture. They share him. It's the favorite stuffed animal of choice. Well, now Squib has Sparkles from the Children's Museum so Blue is playing second fiddle with him.

When Beanstalk was born, I was engulfed by fear. Tragically so. He was born dead, essentially and then they sent me home after four days with this child that had a pneumothorax, club feet, questionable other maladies, pending test results, and I can't remember what else. It grabbed me by the ankles and sucked me right into a pit I couldn't get out of by myself. Even hollering for help didn't work. I asked everyone including God. I could feel it. You know? That feeling you get when you're trying to climb out of a pit but the sides are just crumbling under your fingers and you're screaming, "Hey! Guys? Over here?"

I was a gibbering mas of protoplasmic goo on the inside. And I couldn't have looked too awesome on the outside. Believe me. I think I dropped a good thirty pounds in under four months after Beanstalk was born. And I'm a believing person. I have morals and enough belief in God that I really thought I would have something to lean on, and I think I probably did. But oddly enough it was something Frank Herbert wrote that got me on track. If you are appropriately geeky, then you'll know it:

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”

                                                                                                                   -Frank Herbert

Only I changed some parts after a while. At first it worked as is. But I tried the "I will permit it to pass over me and through me" crap and I'm here to tell you that just doesn't work. It's like walking through your house with mud on your boots. It still leaves tracks. So I tweaked it a bit and came up with something workable.

"I will not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. Perfect love casts out all fear, so you can take your happy ass and your fear along with it and get the hell out of dodge. And when you're gone, I won't care. I'll still be here."


It isn't that I don't get nervous or worry or even get that rush of OMG-ness at times. It's just that I have to stare it down for a second and send it on it's way. I have to hold up my end of things, ask myself if there's anything else that can possibly be done and THEN deliver the mantra. I just really can't even stand to be around fear-driven people.

And those two boys? They wouldn't indulge fear if it smacked them in the face. They've been broken and poked and prodded and dismembered and reassembled and just look at them. They are the two happiest creatures ever to walk the face of the earth. Proof?
Blurry, but a huge smile from Squib two days after open heart surgery and only hours off the vent.
Beanstalk after a series of three surgeries to literally amputate his feet, use the parts to make new ones and reattached them.
That stuff right there. That thing they have? I can't say where it came from. They've been like that from day one. The happiest clams in the ocean. Sure they cry when it hurts, but five seconds later it's forgotten. Forever.

One of my concerns/hopes/dreams was that they grow into a relationship so that Beanstalk would have family around him as long as possible. He can do things, but to add perspective, he's ten and learning to count to twenty and do simple math. We tackled counting to ten last year. But I never wanted to force it or tell Squib he had to watch out for Beanstalk.

Then, on the playground one day, I saw Squib draw himself up to his towering height of 40 inches (heart babies can be short) and about that many pounds, and make that face I knew so well. He stood between where Beanstalk was watching people come down the tube slide and laughing his head off and where another boy had stopped to 'comment.' "That face" is a combo of "I believe I can so do this" and "I will start by gnawing your knees off and when you hit the ground I shall move on to your hips." Add a touch of "over your dead body" and you know the look. He was about to granulate someone who made fun of Beanstalk. And my heart both swelled and throbbed with dire panic. Squib does everything he sets out to do. And the face in the pic up there is not far from his determined litle squint.

Do you know what he said later?

"I don't get it, momma. There's nothing wrong with Beanstalk."

EXACTLY. Take that, tetrasomy 18p and neurofibromatosis whatsits!

Wednesday, January 9, 2013


It is quite possible I've reached the end of my proverbial rope. Psychologically speaking. I was just looking through this huge stack of DVD-R/RW's that we have in a drawer I'd rather forget about and just on the hunch that this isn't the most troublesome day I've ever had, I checked the disk on the bottom of the spindle. And it was a CD-R!!

I know, right? Who needs those? Well, actually, I do. And it's irritating to keep running out of them. So I looked through the whole stack and there were fifty or so and now I am actually feeling happy about it. Changed my entire outlook on the day. Sort of.

On the flip side of reality, I was wasting time on Facebook earlier and I began to notice the adds. And the same two kept popping up. It was really quite ridiculous on the part of someone's PR department:

(And I would show it to you NOW if blogspot would so indulge me. Frack. This is the day I have had. I don't need 24 new effects or to friend all my friends again so we can say what we've already said ninety more times in a slightly different but same sort of way. I want a picture to show up in my blog. Just. Like. Always. HERMPH. Who's computer is this anyway? Not just mine apparently. Just like the bank...who's money is it really? Well...it's not under MY mattress, is it? I'm going to barricade myself inside my little hut and never come out. When I get hungry I'll eat what's left in here and then the first one to drop becomes lunch. Maybe. And now I've downloaded something I didn't need. Disabled everything it tried to enable and finally got what I want. Pish!)

As I was saying, Facebook offered me two choices and I thought them rather...oddly paired:
A (potential) man or (definite) diamonds?
I just really don't think we even need to take a vote on this one. No offense to any male readers, but a helpful hint for you: Never take your pic next to a set of diamond (or other questionable sparkly stuff) studs because every woman on this earth will look right at the sparkly crap and say, "I have to have THAT." Your only hope is if you take the pic with the sparklies in your hand for said woman. Srsly.

That is your only hope. Especially if you're anywhere over 35. It's not an age thing on your part. We like you. We just know a lot more about what we want. And the diamond studs are a whole lot easier to handle.