I hit the roof today when Riah's teacher sent home a pink slip for last night's math homework. She included a note telling us that Moriah missed TODAY'S math lesson because she sent her to the principal's office to do the assignment she didn't finish last night. And then included a nice little jab that the classwork she missed today has to be done and "neatness counts".   After repeatedly trying to nicely get the point across to Riah's educators that she has actual physical problems, I wrote the following rant to be delivered to her teacher and principal tomorrow.  Mind you, we've verbally communicated these things before, but they're being ignored.  Time for a nastygram.

4/22/09

 

Dear [teacher] and [principal],

 

We realize we have been remiss in communicating all of the issues we are currently dealing with in regards to Moriah. The intent of this letter is to hopefully correct that lack of communication and begin to address the issues for the remainder of the fourth quarter. While we realize that [school] is not fully able to meet all of Moriah's needs, at this point we are only seeking to address those immediate concerns that are adding to Moriah's level of frustration and difficulties with school work.

 

Moriah has been attending occupational therapy to address a delay of fine motor skills on Tuesday afternoons since February. Immediately following occupational therapy, she attends a gymnastics class which has been encouraged by her physicians instead of additional therapy, to address concerns with gross motor skills. Yes, Moriah had been enrolled in the gymnastics class previously, but when we spoke to her physicians about discontinuing the class because of exhaustion that course of action was strongly discouraged.

 

During therapy a number of issues have arisen that indicate that the problems we are facing go beyond a delay in fine motor skill development. One of the first things that is evaluated upon beginning therapy is core strength. This directly affects such things as fine motor skills (e.g. Moriah's poor performance with handwriting) if it is lacking. The evaluation led to more questions than answers, as it appears that Moriah actually has relatively strong core muscles. Lori, Moriah's occupational therapist, has been working on identifying the other issues that are manifesting in what would seem to simply be poor penmanship. In short, Moriah's handwriting is not laziness or intentional sloppiness on her part. It is a physical handicap due to her illness and her treatment.

 

Currently, Lori has identified a number of additional issues. The first is that Moriah is simply physically wearing herself out by her positioning at her desk. Ideally, her feet should be flat on the floor and her desktop low enough that her elbows bend at a 90 degree angle when her hands are resting on her desk. She has thus far developed numerous coping mechanisms, but simply being at her desk is a physical strain, leading to her being exhausted by the time she is finished with a school day.

 

Another significant issue that was only identified in the most recent therapy session is a neuro-psych issue. Simply put, the way Moriah is processing information is cognitively causing her to expend more than double the effort an average child would when posed with certain subjects. This will be addressed further by a full battery of neuro-psych testing at [medical facility]. It would be helpful if it were understood, that especially in spelling and math Moriah's brain is taking longer to process the information given, and she requires additional time to complete tests and assignments.

 

Yet another issue that has been identified is a visual perception issue. For most people, when they write, they form a visual picture of what their hand is doing in their mind. This enables us to write with our eyes closed, and still have the letters be formed properly and the words be understandable. Moriah's brain is having difficulty making this visual connection to what her hand is doing, and this is a significant part of why her handwriting is suffering. This is something that will take a considerable amount of therapy to adapt to.

 

While there is still more, our biggest concern is that Moriah is being penalized for our lack of properly communicating these things to the school. She has had difficulty completing her homework assignments most Tuesdays because she is physically and mentally exhausted after a full day of school, therapy, and then gymnastics. Again, I would like to reinforce that while gymnastics may seem like an optional activity, she is still involved in the class at the recommendation of her physicians. If we could possibly change the schedule so therapy and gymnastics are on different nights, we certainly would. Barring that, we are asking for consideration of the situation. Moriah normally goes to bed between 7:00 and 7:30 pm. Recently, because we have been trying to force her to complete her homework, she has been going to bed as late as 8:45 or 9:00 pm on Tuesdays with her assignments still incomplete.

 

We hope that this provides a better basis for everyone to understand what Moriah is struggling with, and will hopefully lead to all of us working together to help Moriah get through this school year with a reduced amount of frustration. She is fully capable of doing her work, but for things like spelling and math tests, the way she is processing the information requires more time for her to complete it. She is fully capable of doing her homework, but not on Tuesday nights when she is absolutely exhausted from a full day of school followed by occupational therapy and physical therapy in the form of her gymnastics class. If a note to this effect is required from her physicians, that will be provided.

 

Please do not hesitate to contact us with any questions. We very much want to work with you to Moriah's benefit, instead of all parties feeling as if they're working at cross purposes.

 

 

Regards,

[Moriah's parents]


Post-sealed-in-an-envelope commentary by yours truly:
See, folks?  This is what happens when you piss off the Mama Bear.

 

 

I can't quite figure it out.  I enjoy writing.  Most of the time, those who read what I write tell me I have a talent for it.  Yet the whole "paragraph a day" challenge fell horribly flat.  I'll write one or two sentence updates for Facebook a few times a day, but I had neglected Moriah's Care Page (MoriahHope with no space, if you hadn't ever been there) for nearly four months.  It's been a few days now that I've been pondering this and trying to fathom a reason for it, but I'm at a loss for a reason.  I realize that part of it is self-doubt.  "No one is actually going to read anything I write, so why bother?"  Somehow, writing for myself just isn't a motivator and again, I have no real idea why this is.  That should be the only thing that matters, shouldn't it? 

I guess part of it is the old writers' axiom, "write what you know."  Well... what do I know?  I know about being a mom.  I know about being a mom to a cancer kid.  I know about being a wife.  I know about being a wife to a male-to-female transgender husband, although there is a wicked learning curve on that one.  I know about living in a small town for my entire life.  I know about being a college drop-out.  I know about being a survivor of abuse.  I know about being bi-polar.  I know about the struggle to make ends meet on a budget in a single-income household with two kids.  I know about wanting the best education for my kids, and knowing for a fact that the local public school isn't able to provide that.  But how the heck does any of that make for interesting reading material?  Who would want to read anything about that?

Is it possible to be spoiled by reading too much?  I have a voracious appetite for books, and have read pretty much all of the fiction (other than the sci-fi, and I've read some of that) that is in our collection of around 4000 books.  That doesn't include books I've gotten from libraries over the years or borrowed from others.  Is it really possible to have so many authors' ideas pass through your head that you conclude you couldn't write an original thought if your life depended on it?  Is it possible to become so jaded by reading so many books, from Hamelet to Harlequin romances, that you just feel inadequate attempting to put pen to paper?

Maybe that's part of why my paragraph a day personal challenge failed.  I felt like I was regurgitating cliches and not actually writing anything new.  I don't really want to write about my life, though... 'cause it's boring.  I don't use that word lightly.  Growing up the words, "I'm bored," were inevitably met with a chore, so that phrase was quickly eradicated from my vocabulary.  Honestly, though, I can't figure it out.  Other friends who enjoy writing don't exactly live jet-setting, action-adventure style, James Bond lifestyles.  Even then, they write!  It may be a yearly nanowrimo project, but every year I can count on hearing about super-heros with useless powers or alien zombies or just plain zombies. :-)  I admire the heck out of that.  I wish I could find it within myself.

I was going through some pictures today, because of what may seem like a silly, silly thing to some.  I put Moriah's hair in a pony tail!  It sounds like such a small thing, but it's a big deal.  Why?  Allow me to show you, in the manner that will make the most impact humanly possible.


That's Moriah, eating breakfast at her Aunt Denise & Uncle Ben's house the morning she was going to the Children's Hospital of Philadelphia for her first consultation.  Thursday, April 12, 2007.  The day before our world shattered into a million pieces.


That's Moriah on December 8, 2007.  She had just come home from her second stem cell transplant a week earlier, and had not had her spot radiation yet.


That's Moriah exactly one year ago today.


The date's wrong on the photo, 'cause I set it wrong on my camera yesterday, but this was taken today. 

Some days it's just a pony tail.  Other days, it's a reminder of how far we've come in two years, and how thankful we are to still have her here and healthy.

Yeah, I stuck with that new challenge real well, didn't I?  Three weeks later, I realize I pulled it off for two whole days.  Ah well.  Time to give it another shot, yes?  Today's jumping off point is "an eternal rainbow."

Overhead the sky was slate gray.  The clouds scudded along, ever so slowly.  If you squinted a bit, it wasn't hard to imagine you were laying on the ground watching a herd of gray elephants shuffling along churning up a cloud of dust that followed them along their trek.  A brisk wind was blowing, whipping the few leaves that were left on the trees.  Bare branches danced against the sky creating an eerie effect when coupled with the howling of the wind and the creaking of the tortured tree trunks straining to hold their ground against the onslaught.  It was obvious that rain was on the way, but so far there was just a damp chill to the air.

Gradually, the sky darkened to charcoal.  Off in the distance you could see lightning dancing in the clouds, sudden flashes of brilliance rolling through the mass of sameness.  It reminded you of swarms of fireflies flitting around a field on a summer night.  You could watch the storm as it inched closer and closer.  Thunder rumbled across the sky like a steam engine stoked to a full head of steam, flying along the tracks, coming toward you at full speed.  The smell of rain grew and the dampness wrapped you in a cloak, chilling you thoroughly.

Watching the sky, you suddenly realized that you could see the line where the rain began, and you watched it moving in your direction.  You moved inside, and stood at the window mesmerized by the spectacular sight of the storm on the move.  Mere moments later the first fat raindrops splattered against the glass in front of you, startling you with the suddenness of their arrival.  Faster and faster the rain fell, until it was coming down in torrents so heavy that you couldn't see the end of the driveway.  The rain pounded out a beat on the roof that was somehow both rhythmic and chaotic.  Soothed by the sound, you curled up on the couch with a book and quietly read as you listened to the storm.

Unexpectedly, the lights blinked out at the same moment you heard another peal of thunder shred the silence.  You glanced out the window and witness a spectacular light show that no man made laser display could hope to compare to.  Lightning streaked in a jagged bolt from the roiling underbelly of the clouds, following its own path to the earth.  Somehow you could imagine it filled with malice, seeking out the most destructive landing point possible, but that made it no less majestic to watch.  With candles unearthed and lit, you settled back down with your book, once again enjoying listening to the rain.

Gradually you realized that it is silent and the rain had moved on.  Grabbing a light jacket, you headed back outside.  The first breath of the cool, damp air was refreshing.  Overhead, the sky was lightened to a pale dove gray and the clouds were breaking up, showing brief rays of sunlight through every now and again.  You glanced over your shoulder, and did a double-take.  Slowly turning, you gazed at the most spectacular rainbow you had ever seen.  It seemed to arch miles into the air, having no beginning and no end.  Vibrant colors brightened the sky, and it looked as if this rainbow had no intention of ever reaching the ground, but was simply spreading itself as far as the eye could see.  Sadly, even as you watched, the sky brightened and the rainbow shimmered and started to fade.  Knowing that it couldn't last forever in reality, you knew that the memory of this perfect rainbow would survive forever in your memory. 


_________________________________________________________________________________
OK, so it's not an eternal rainbow.  It's something, though!

I've debated whether or not these paragraphs should attempt to work together or if my original idea of just stand-alone paragraphs was sufficient.  For now, I'm going to go with whatever the heck strikes me.  If an idea comes along that ties in with a previous day, so be it.  If not, that's OK, too.  That said, here's today's jumping off point: guns without bullets.

Late in the evening, it was just that time at twilight where the horizon appears to be on fire.  The entire skyline was awash in a mellow orange glow, gradually darkening to cobalt.  A shadow suddenly detached from a boulder and crept toward the village at the bottom of the hill.  Stealthily, the man skulked into the village, making his way to his goal.  He slunk from bush to tree and hiding place to hiding place finally stopping in front of the largest dwelling in the village. 

It was rather less than impressive, and although it was the largest dwelling it was still rather rudementary and crude.  The thatched roof was bare in spots, revealing the beams underneath.  What passed for windows were simply vaguely rectangular holes cut into the walls.  They were covered on the inside with woven mats of grasses.  A soft shimmer of light gleamed through the loose parts of the weave and a thin trickle of smoke wafted through the holes in the roof.  Propped loosely against the entrance were lenghts of wood that had been nailed together in an effort to create a door.  Overall, the appearance was rather decrepit and disheveled.

Dressed entirely in black, the figure broke away from a tree in the barren yard and made his way to the wall of the house.  He disappeared around a corner and slipped inside through a window, gently moving aside the grass mat so it didn't rustle.  Although a fire was still burning in the hearth of the single room and a kettle steamed on its hook, no other soul was in sight.  Taking advantage of the situation, the man pulled a sheet of paper from under his shirt and unfolded it.  After he had consulted what could only have been a map, he moved into the south corner of the room and relieved himself of the pack he had carried on his back. 

Outside, a group of villagers gathered, having kept watch for days.  Finally, the trap was closing and they were about to reap their revenge.  They waited until they heard the soft sounds of a shovel scraping the packed earthen floor of the house before moving farther.  Softly a mourning dove cooed and at the signal all of the villagers sprung to action.  Window coverings fell, the unsecured door crashed to the floor, and the would-be thief inside jumped in surprise.  He straightened to face his enemy only to find himself surrounded by the men and women he had cheated out of the few meger things they owned.  His urge to fight quickly evaporated when he saw the three rifles aimed directly at his chest.

Only a short while later the man was tied with stoutly braided ropes and found himself lying on the floor of a barn, surrounded by the noises of animals bedding down for the night.  Just outside the door the villagers basked in the warmth of a large fire and celebrated their capture of the thief within.  They had no idea what they were going to do with him now that they had him, but they felt a bit smug that they had outsmarted the cheat who had once outsmarted them.  Laughingly, the three men who had so confidently aimed rifles at his dark heart passed them around to others who were curious to examine them.  Intimidation worked once again, as they all roared with laughter over the fact that no one owned any ammunition at all for any of the three rifles.  The thief, hearing the celebration outside, realized how he had been duped and silently fumed while continuing to mull over how he was going to get out of this mess.


Woohoo!  Five whole paragraphs and I didn't delete them!

Today's jumping off point: tower of paper.

It was no more than eight to ten inches tall, but most days it loomed so large it felt more like it was looming hundreds of feet over her head.  The dreaded paperwork.  Something so innocuous, but it represented hours of drudgery and tedium.  She tried desperately to ignore it.  More often than not, however, it seemed to take on a life of its own and taunt her.  On a few occasions she swore she saw it bending into a smirk, scoffing at her futile attempts to pretend that the top right corner of her desk didn't exist.   Oh, the temptation to just sweep the entire pile into the trash was nearly overwhelming.  Better yet, to hear the satisfying gnashing of blades in the shredder as the pages were consumed.  Always in the back of her mind, though, was a vision of this horrid animated tower of paper chasing her around cubicles and down hallways.  Eventually it would devour her if she tried to destroy it instead of conquering it.  Somehow, that just wasn't enough motivation, and the pile remained an ominous presence she struggled to ignore.

I was commenting to a friend the other day that I'd really like to get back in the habit of writing.  In the hopes that if I make a public effort at it, it'll encourage me... I'm going to ask you guys for some help.  My goal, for the next two weeks, is to write one paragraph a day that has nothing at all to do with my life, my family, or my children.  What I'm asking you (a very broad, general "you" to anyone who may read this) is just to post a 2 or 3 word idea in the comments of this post.  I'll go through them and take one each day to write something on.  It may wind up being more than a paragraph, but my goal is to simply get one paragraph out.  Hopefully, with something external to spark the creative process, I won't wind up writing about the daily events of life.

Will you help me?

Yes, it's official. I have no life. The children are at my maternal unit's house and are sleeping over for the night, and I can't think of a single thing to do. There are no movies we feel like going to see, we really can't afford to go out to dinner, I'm not much of a window shopper. It's just plain pitiful! It's a Saturday night, we have no children, and we're going to wind up sitting here watching television because neither of us can think of anything interesting to do. Parenthood at it's finest. :-(

Yay! The missing friend is OK! She finally sent me an email and a new phone number! I feel so relieved. I'm glad to know she's alright.

Other than that, I have nothing to say. :-) I have written exactly zero words today for NaNoWriMo, so my count stands at 2199. I hate being female, and I feel lousy today.

All of that, however, is eclipsed by Kris and the kids being okay. Yippee! That's all that counts.

Yup, I'm nuts. Totally and completely nuts.

It's Nov. 2, 2 days into NaNoWriMo. Yesterday I had about 800ish words, and I made the mistake of reading it. I then promptly deleted the file. I didn't want to leave the house for the meeting at B & N last night. Hubby finally threw me out of the house, all but bodily. I had fun! There were 10 of us there, and we hardly talked about writing at all! There was a smattering here and there, but mostly it was a "getting to know you" type of thing. Erin, the regional leader, is great. I met some other great people, too. I came home & started writing again. Yippee. I'm up to about 500 words again. Sheesh. At this rate, I'm never going to get to 50k. I'll have done SOMETHING, though, even if I don't make it all the way. That's better than what I've accomplished in the year and 6 months since I wrote out this plot synopsis! :-)

I still want to delete the 500 words I've got. It's not right! It's not how I wanted this to start. :-( I don't know. I may wind up just writing scenes and then going back and putting them in a different order. This is in the first person right now. I was planning on doing it all that way... some chapters from the husband's point of view, and some from the wife's, but all in the first person. Now I'm thinking that's a bad idea. GAH! It's too late for this type of debate! I'm getting stuck on technique and stuff. I need to just WRITE... as randomcyn said... it's not supposed to be GOOD, it's just supposed to be THERE! *sigh*

OK, OK. Enough procrastinating. Back to the writing thing.