Tuesday, June 04, 2013

Poise and Grace - something more

The past two years have been tumultuous, to say the least; the last year in particular has been especially rough for all of us, but especially for my baby girl Kaya.


Baby girl is definitely a malapropism. This year she turned 13, is now almost 5'7" and is as slender and willowy and ethereal as a fantasy princess.

She is growing so fast - she is a full fledged young lady! But in my heart I see her as she looks above so tiny, imagining herself a fairy full of wonder in a world that is determined to rob us of all the wonder there could be.   I could write a blog about how she is growing, and what that means, and how it affect us both, but I did that a bit two year ago.

I could describe how beautiful and thoughtful she is, how brilliant and creative she is, but most people don't even have to meet her and can see that in a heartbeat. And most of us can all write similar accolades of our children as they grow into adulthood. I know I will in the next year as my son completes his senior year of high school. Its like a rite of passage.

But this is more than all that.

In reality, she has done more than just grow in to a wonderful young lady; she has become an model of a force to be reckoned with, a superb and surreal example grace under pressure.

In the past year, she has learned extreme patience:  to wait at the doctor's office; to wait for lab work; to wait for test results; to wait for insulin to take effect; to wait and see what her numbers are; to wait to eat until she can; to wait for a snack that she can't have yet because her numbers are too high.  All that waiting has created in her a poised and  patient soul that does not need to rush through any project, who has time to wait for others, who has time to wait for her siblings and I.

In the past year, she has learned sacrifice:  to bleed for her health; to experience pain on a regular basis for her health; to give up certain foods; to sacrifice working with the sugars she needs for cake decorating and search for replacements; to sacrifice time and pause to eat, to check her glucose levels, to work out, or to administer more insulin. All this sacrifice has created in her a compassionate soul who understands that sometimes we are not as in control as we would like to be, and sometimes we have to opt for plan B, or plan C, or plan D.

In the past year, she has learned what it is to hurt:  to be pricked by needles of different sizes several times a day just to live; to be stabbed by needles that need to take her blood for testing or a glucose monitor needle that rivals a harpoon; to have emotional hurts that are worse than the physical ones; to cry in my arms on my bed when an infusion site goes bad, a glucose monitor needs goes in wrong, or her numbers are too high or too low and she feels so scared; to know what it is to have people stare at her when she has an emergency high or low and try not to feel self conscious about it.  All of this has created in her a caring soul, one that understands that we have hurts and need grace when we are in pain and hurting, and that sometimes the best medicine is a hug from someone who loves you.

She has always seemed this ethereal creature, not quite of this world, but now there is something more.

She is now more than just a wonderful young woman; she is a young woman who understands the world and the needs of herself and others more deeply. She has knowledge that many lack of the importance of her health, family, and friends, and just as we are here to help her everyday, she can be there to help us. She can give us grace as she has experienced it; she can be patient for us as she has learned patience; she sacrifice for us and help us learn to sacrifice as well. She shows us she cares every day, just as she has seen us help care for her no matter the hurt, pain, or toll involved, and then teach us to be more like her.

She is more than just a wonderful young woman, and I am so proud of her for it.


Saturday, February 23, 2013

lowest of the low (an exercise in stream of consciousness free verse)

I do not think I can feel much worse - physically, mentally, emotionally. I am so tired all the time. Tired of working three jobs, only to scramble and hope to work more. Tired of middle of the night wake ups and driving everywhere, for everyone, everyday. I am tired of grading, both for my kids and others'. Tired of housework that is never done, schoolwork that is never done, responsibility that is never done.  Tired of lies and hurt and loneliness and being on every moment of every day. Tired of having to be the nice guy, of being mommy and daddy, of stress and worry and exhaustion. Of never having a day off. Of worrying when I just want to go out for a few hours. Of worrying while I'm at work. Tired of sore muscles, stress headaches, of dealing, dealing every day; dealing with failings and untruths and schoolwork and medicines and numbers. Every day more and more numbers: numbers in the bank and on my tax return and on my bills. Numbers on a pump and a meter and on packaging and a chart. Numbers in a gradebook, on a quiz, on an essay, on a paystub. Numbers on the odometer, on the speedometer, on the speed limit sign, on the milage chart.  Next exit two miles, but not my exit. No exit for me. I am riding on this highway, and the miles roll by, and I can't find a gas station and there is no one to relieve me on the drive. It is late; the road is dark; my exit is no where to be seen; and I am so tired of driving.  I go to bed at one am with work still to do, and I wake up at six am with more work more work more work. It never ends. The stress, the worry, the responsibility the loneliness the heartache the fear the counting counting counting never ends.  Every day questions questions questions, how does this sound? Why can' t we go?  Where is my shoe?  What is for dinner? When do we leave? Why do I have to do this?  And why why why me oh GOD and I don't have answers not real answers not the ones that matter I want a break but I dont' want a break. I am always the bad guy but I am never the bad guy. My heart hurts but my heart is dead. All that remains of my heart are the three pieces that live with me, hope with me, rely on me. It is me; I am all that stands between them and the world, this horrible horrible world that only want to crush and hurt and kill. I am tired and bruised and broken. I am barely a shell but I am all they have against the slings and arrows and sticks and stones and horrors and I have to stand tall ready to fight and I have no weapons but my mind, which is tired, and my body, which is tired, and this single lonely  fragile shell is no match for all the world throws and it is not enough to cover and protect those remains of my heart but I stand there anyway, knowing that the next time I may not rise, my body may be to bruised, my muscles give out, but I am ready for the next hit I stand tall for those three because if not me, then who? I am crushed I am broken beyond measure and everyday I rise waiting for the next assault, because I cannot let those slings and arrows and sticks and stones and pains and hurt reach them. So I take them, over and over and just when I think I can't get up again I do but I don't know how, For there is nothing left, but still I rise for those three, I take them pain and hurt for them, I take all the horror of this godforsaken miserable excuse of a life and a turn it to construction paper butterflies and pretty lights in the sky for if not me, who?So I work out, I build, I build up my body, I build up my brain, I build up my bank account but it is ever enough and never enough time for it all time has become this brilliant escape artist who denies me all I want to do. He denies me sleep and leisure, he denies me time with my children and time for work, he denies it all, and I need that time, I need it to build, but I can't.  I will never be smart enough or quick enough or courageous enough or strong enough. Never enough strength why isn't there enough strength? I need sleep but I can't sleep. I can't rest. I am afraid to rest. I feel my own weakness when I rest and that is when the cruelty hits hardest. And when I am on the ground they are exposed so I can't rest, I can't be knocked low I have to stand tall even when every ounce of me screams (oh the screams - the screaming it doesnt stop why doesnt' it stop?) in pain and every part of my soul tells me to just LIE  DOWN ALREADY, I pick my bruised self up and on shaking legs, limp arms, blinded eyes, and a bleeding head and I stand at the fore, again, alone, alone, alone, another day, and another conflict, another pain I must deflect, for these three, because if not me, then who? And the echo in the distance answers: no one. So it must be me.

Saturday, February 02, 2013

Kaya's JDRF Walkathon T-Shirt

Here are images of Kaya's T-shirt that she personally designed for her JDRF Walkathon!

The shirts are $15 each, and ALL profits to Kaya's walkathon donations! Please let me know your size when you order.

If your would like to order, please contact me via either Facebook or email: familyd@hotmail.com

I will take your information and send you payment delivery information. Thank you again for your support!

Front

Back

Kaya modeling her shirt! 

Wednesday, January 30, 2013

Kaya's JDRF walkathon fundraising

Hello Everyone!

This is just a update to let you know what we are doing over the course of the next three months to add to our fundraising efforts. Please feel free to take part in some of all of these fundraisers to help Kaya raise as much as she can (she would like to earn the "Golden Sneaker" and raise $1000!).  Then we are walking on April 27th. Anything you can do to help us reach our goals is AWESOME!


Here are our fundraisers. I will update this blog as more donation locations become available!
Donation locations: 
Directly to Michelle or Kaya
online at: http://www2.jdrf.org/site/TR/Walk-CA/Chapter-SanDiego4053?px=2520096&pg=personal&fr_id=2190


Fundraising activities:

February: Mary Kay party (at my house and online!) - profits go towards Kaya's JDRF walk!
               T Shirt sales - we should have pics and order info online in the next week!
               recycling Drive - if you live close, let me know when you have a few bags of cans or bottle and I    will collect them from you!

March: Thirty -One bags/totes party sales! - profits go towards Kaya's JDRF walk!
               T Shirt sales - we should have pics and order info online in the next week!
               recycling Drive - if you live close, let me know when you have a few bags of cans or bottle and I    will collect them from you!

April: Jewelry sales - Diabetes Awareness and Kaya's Dove design on custom made jewelry --
           - profits go towards Kaya's JDRF walk!
               T Shirt sales - we should have pics and order info online in the next week!
               recycling Drive - if you live close, let me know when you have a few bags of cans or bottle and I    will collect them from you!

Sunday, January 06, 2013

Dysgraphia - What is it?

            My son has terrible handwriting. Not just bad printing, but poor cursive, poor numbers, and difficulty with drawing. He is 12, in 7th grade, left handed, and until just this past year, printed like a 2nd grader.  While we assumed it was age and left-handedness that resulted in his poor handwriting, he was finally at an age where some improvement should have occurred. Over the past 5 years, we tried every program out there: Handwriting without Tears (we still had tears), Pentime, PACES. Nothing helped.
And while his cursive is at least legible, it is barely legible, and he hates to write in cursive. He says writing a lot (more than one paragraph) hurts his hand and he would rather print. He prefers mechanical pencils and says the wood ones feel funny, grainy, when they write. Getting him to handwrite a paragraph is like pulling teeth; however, put him on the computer and he could write pages, typing like the wind. What he produces when typing is so well thought out that I can’t put together that this same kid can barely put together a sentence when handwriting. He consistently fails to use caps, periods, commas, and even his spacing strange.
It all came to a head for us early this year in 7th grade. We were doing a science project and he needed to write a title for it at the top of the notebook paper. The title he came up with was: “The Water Project.”  What he wrote on the top of his paper was: “th  ewat   erp  rojec  t.”  I was horrified. It was time for something more. I hit the internet.
One quick search answered nearly all of my questions. I typed into Google, “poor handwriting,” hoping for some ideas that I had not yet tried. The first listing used the phrase “dysgraphia” - what was that?
According to Wikipedia (2009), dysgraphia is “a deficiency in the ability to write, regardless of the ability to read, not due to intellectual impairment. People with dysgraphia usually can write on some level, but often lack co-ordination, and may find other fine motor tasks such as tying shoes difficult” (en.wikipedia.org/wiki/Dysgraphia). Further research helped me better understand what this was and check to see if my son fit the bill. The Learning Disabilities Association (LDA) (2009) has this list on their website under “Signs and Symptoms”:
  • May have illegible printing and cursive writing (despite appropriate time and attention given the task)
  • Shows inconsistencies: mixtures of print and cursive, upper and lower case, or irregular sizes, shapes or slant of letters
  • Has unfinished words or letters, omitted words
  • Inconsistent spacing between words and letters
  • Exhibits strange wrist, body or paper position
  • Has difficulty pre-visualizing letter formation
  • Copying or writing is slow or labored
  • Shows poor spatial planning on paper
  • Has cramped or unusual grip/may complain of sore hand
  • Has great difficulty thinking and writing at the same time (taking notes, creative writing.) (http://www.ldanatl.org/aboutld/parents/ld_basics/dysgraphia.asp).
I was fascinated. My son hit all but one of these signs – even tying shoes! My husband was intrigued; he asked if it could be hereditary, as he hits all of those markers as well. And I will admit my handwriting has always been sub par. Wikipedia does indicate that might be the case, but there are too few studies on dysgraphia to really draw a solid conclusion.
Dysgraphia is often a neurological problem (the brain can’t talk to the fingers) and is sometimes compared to dyslexia. The National Center for Learning Disabilities (2009) calls it a “processing disorder,” so the difficulties may change as one ages (http://www.ncld.org).   Typically, students with dysgraphia are bright, speak well, and are excellent readers and good communicators. The fact that they cannot replicate that in the written sense is almost what makes this problem that much more puzzling. My son can critically analyze a text or poem aloud, but ask him to do it on paper and it is a mess. How can a student who obviously thinks so well not be able to write it down?
I am not one to leap at a label; in fact, we have gone out of our way not to use this label with our son. But an answer? Possible ideas on how to help? It was all right there. I felt as if a huge boulder was lifted from my shoulder. Now we had some tools to help him.
Then came the big question – what is the next step to help his writing? The LDA website also provided some strategies to help the writer:
  • Suggest use of word processor
  • Avoid chastising student for sloppy, careless work
  • Use oral exams
  • Allow use of tape recorder for lectures
  • Allow the use of a note taker
  • Provide notes or outlines to reduce the amount of writing required
  • Reduce copying aspects of work (pre-printed math problems)
  • Allow use of wide rule paper and graph paper
  • Suggest use of pencil grips and /or specially designed writing aids
  • Provide alternatives to written assignments (video-taped reports, audio-taped reports) (http://www.ldanatl.org/aboutld/parents/ld_basics/dysgraphia.asp)
There are some good reasons for these recommendations. For example, the use of the word processor allows the student to complete work at his/her level. We can easily complete a three page book report using Microsoft Word that would never happen (or only happen painfully) if it had to be hand written. Also, the reduction on the reliance of written work results in a reduction in stress overall, especially when it is time to write. 
We still require him to use a penmanship workbook, but we only do it 2 days a week. The other days we use a product called Create-a-Sketch by Insight Technical Education. It is a simplified drafting workbook which allows our son to practice his writing skills, but not with writing. He uses it to practice control, and he much prefers it to his handwriting text.  Again, this helps lessen the stresses he has when approaching handwriting projects.
We have used graph paper for a while with math – this is the first year without it. We buy specific mechanical pencils for his written work. Earlier this year he needed to do a report on “Around the World in 80 Days,” and he used Microsoft PowerPoint to do it. I told him it had to include text, but he could play with the graphics element. We showed it to our Education Specialist, and she was so impressed, she showed it to her literature class.
This is not to say we use “dysgraphia” as an excuse or a label – we used the recommendations to help us solve a problem for my son. He still needs to write paragraphs for his schoolwork – not all of his writing is on the computer; just more of it is. For essays, he must handwrite outlines and one paragraph, but the rest he can compose onto the computer. He still has his handwriting workbook. We’ve told him that while his typing is great, he still needs to know how to handwrite, and as he ages, he is starting to see the truth in that.
So have these recommendations worked? Has handwriting less improved his handwriting more?  Yes, and I am as surprised as everyone else. I think the reason for the improvement is that when he has to do handwriting, he can absolutely focus on it – not on what the sentences have to say or if his paragraph makes sense. He copies the text and all his energy is focused on that alone. Then, when he needs to write an essay or answer history questions, typing allows him to focus on that; cognitively, it allows for a better flow of ideas.
Somehow, separating the two processes allows him to integrate them in his mind on his own schedule, and the result is better handwriting, and better writing with that handwriting. Just today, he wrote half a page on Augustus Caesar, which contains varied sentences, specific detail, and has good sequencing. His letters are no longer oddly spaced, the letters are legible, and he doesn’t complain that his hand hurts. That, I think, rates as a success in my book. 


*Originally published in Secular homeschooling, Sept 2010.