April 17, 2013


i've continued to home school sparky this year.

he is now in grade 8.

he got sick at the beginning of grade 5. by january of that grade year, he was no longer able to attend school. grade 6 was a complete write off. he was far too ill to attend school and too cognitively challenged to even work on school at home. last year was the first year we did home-schooling. yes, stepping back into academics...with mom at the helm. scary.

with blood, sweat and a whole lot of tears (on both our parts) he successfully completed the core subjects of grade 7. he is one determined kid.

this fall, he chose to take on science 8, socials 8 and continue working thru math 6. the faculty at the distance ed school that we are utilizing for materials and support, cautioned that they don't normally recommend students do more than 2 courses at a time. and that is the kids without challenges. however, sparky was eager and i did not want to discourage his enthusiasm. 
Gold panning skills in Ft Langley - Sept 2012
so he motored thru all 3 subjects sept and oct....until mid october when the problems with his eyes began and then the subsequent over all deterioration set in. again, we watched this disease snuff out his abilities - brain fog crept in and clouded out thought. brain fog. hmmm. it is more than that. 
so. much. more.
it's irritable brain.
it's inconceivable.
lyme hijacks your brain. 
it's thinking and thinking and not being able to think all at the same time. it's how i used to try to count to 10 but couldn't get past 1. or making it to 3 and then losing count - even tho' i'd kept track with pen and paper

and the worst is the undulating frustration and panic that overtakes you in those moments. the desperation derived from knowing that you no longer know what you knew before has a taste, a smell, a pulse, a thousand physical sensations. forehead crinkled in frustration, tears slide hot fury down your cheeks, throat contracts tight, fist pounds table, pressure squeezes your head from the inside out...until all that is left of you is a huddled up ball, liquid pain washing over scorched body and mind
eyes glazed, face contorted, hands claw at air, turned inward toward face, clenched and shaking, mouth gaping as fury searches for its voice. rage builds as pressure deep within until it bubbles and explodes in white, hot fury and walls are pounded, doors slammed, pencils snapped as fevered, flaming brain beats a staccato manic rhythm in your skull, each pulsation presses in and there is no escape as the fury roars forth. 
then comes the nothingness. 
the blank stare. 
the caged feeling. 
the knowledge of life around but no ability to interact. to participate. to find words. to feel feelings. 
the world around you fades into oblivion...until it is but a speck on the horizon of your conscious mind

brain fog. benign description. to know that you no longer know what you knew before.

last spring, we tackled language arts. 

we worked on learning to write a paragraph.

the assignment was to write a descriptive paragraph about onion rings
it took an agonizing 4 weeks for him to construct the following:

then he. me. his tutor. all of us labored through endless sessions of re-writes in order for him to meet the academic requirements necessary to call the task complete.

the difficulty and challenge of it was not because he had missed the teaching on how to construct a paragraph. no, in fact, in many ways, he had already mastered those skills. the following picture is of a paragraph he wrote (without help) on sept 17, 2009...one of the last pieces of work he did before lyme came like a thief in the night and hijacked his body and mind.

no, the skills he had possessed at one time...but lyme put his brain on lock down. it crossed the wires in his brain and snuffed out thought and reason. following a thought from beginning to end were an enormous challenge - never mind, then trying to process a thought enough to write it down.

fast forward now to this past fall.
just before his brain was hi-jacked again.
socials 8 assignment. 
construct a "bone oracle" and write about a day in your life.

Making a tortoise shell oracle
his brain was hi-jacked again within a week or two of writing the essay. and i forgot to celebrate this accomplishment. i got caught in the grip of the grief of watching this unfurling process steal his brain from him again and it's easy in those moments, in those months as they agonizingly drift by, to forget that there have been improvements, change has occurred, that he is still sick, that none of this is normal, yet he is better than he was before...he's come a long way. he is one determined kid.

oracle in process

i re-read his essay this week and i just had to share

The completed project

Hi. I'm Sparky. I'm 12 and I live with my mom, dad, and sister Avery. She is 9 and a pain in the butt but I love her. I, also, have a brother, Taylor. He is 20 and he lives on his own now. I miss him a lot but he comes over to visit. He is an awesome big brother and we have fun playing video games together. Next fall, he is moving to the UK to join the Royal Marines. I have another brother, Harrison. He is definitely not soldier material. That is because he is a dog... a very lazy, fat dog.

I am a rather complex dude. I have an interesting life. In some ways, it is very different than most kids my age...for example; I spend a lot of time with doctors. In fact, I spend so much time in various doctor's offices that I do most of my school work there. Heck, I'm even doing this assignment in a doctor's office! So why do I spend so much time in doctor's offices? Well, it is definitely NOT because of the magazines in the waiting room! When I was 9, I got really sick with several bacteriological infections. The infections are called lyme, babesia, bartonella and mycoplasma. You can get them from the bite of an infected tick. Did you know that ticks can be as small as the period at the end of this sentence? Crazy, huh?

The doctors in the country I live in (Canada) do not know very much about theses diseases and so it took a really long time for them to figure out what was making me so sick. Actually, the doctors in Canada couldn't figure it out! My parents had to take me to a specialist in another country (the USA). I was sick for 6 months before I was finally diagnosed and started on medicine to fight the disease. During that time, the bacteria invaded my brain, spinal cord, organs and tissue. The bacteria that cause my illness are really smart and crafty jerks and are sometimes smarter than the medicine I take to kill them. There is always a major war going on in my body. It makes my bones and brain hurt but I am a fighter and in the end, the bugs will lose.

Aside from warring with bacteria, I'm pretty typical. I like to mountain bike and play basketball. I like to tease my sister. I like to play video games. I like to make stop motion videos. I like to cook and bake.

Hey, why don't I tell you about a typical day in my life in the year 2012?

I wake up and eat my favorite breakfast in the whole world - BACON! I, also, have to take a handful of pills and a liquid medication called mepron. That stuff is so gross! It is like bottled evil! You can't shake the taste. Unfortunately, taking it is a necessary evil!

Then my mom and I go to the doctor's office. I get medicine through IV there. We are generally there for over 3 hours, so I do my school work there. We kinda take over the entire office.

After leaving the doctor's office (aka "my classroom"), I can sometimes sucker my mom in to buying me a pumpkin scone from Starbucks on the way home.
BEST. STARBUCKS TREAT. EVER! They only have them in the Fall. On the drive home, we listen to a band called Mumford and Sons. My brother Taylor got me addicted to listening to them. Actually, my whole family loves them now!

The Cave Lyrics - Mumford and Sons

By the time we get home, it's lunch time. If I had it my way, I would eat a sub sandwich everyday. My favorite kind is turkey with with nearly every topping known to man included on it. MMMMMM, lettuce, cucumber, pickles, peppers, black olives, pickles, tomatoes, jalapenos, and ranch dressing...did I mention pickles, yet? I love pickles!

After lunch, I get some free time. On my free time, I usually play NBA2K13 or minecraft on my xbox. I like playing NBA 2K13 because I love basketball - I have been playing NBA games since I was little. 

Sparky shooting hoops as a wee gaffer
Actually, I have been playing real basketball since I was real little. It is my biggest passion in life. I hope to play it professionally one day. No matter how terrible my illness makes me feel, I try to shoot hoops every day.

Another thing I like to do during my free time, is play with, tease and chase my puppy. His name is Harrison - aka "The Ooshy Booshy Boy". But that doesn't usually work out because he is so super lazy.

In the afternoon, my math tutor, Ronald, comes over. A tutor is kind of like a teacher that comes to your house to help you with school work. He works with me for about 2 hours. After that, I am usually brain dead. However, if my body is feeling okay, then I play some basketball. My favorite game is 21. I like to play with my dad or my brother if he is over.

My favorite dinner meals are ribs or pulled pork sandwiches. Ya....I really like pork! Most of the time, we eat dinner all together as a family around our dinner table. We talk and we tell jokes. If my grandparents are over, we talk "politics". That doesn't generally go so well.

In the evenings, I do more IVs.

THE GOOD: I can do these IVs at home.
THE BAD: My mom hogs the TV and I have to watch stupid TLC shows.

After my IV and taking more pills and gag, more mepron, I head to bed.

So that is a typical day in my life. Some of it is unique to me, like the medical stuff and Lyme Disease. I hope ticks will be extinct in the future or, better yet, I hope that one day there will be a cure for Lyme and all the co-infections. The sickness stuff is just one part of my life. As you can see, when I can, I still do things that regular kid would do - like playing some sports, playing video games, joking around and eating as much bacon as possible. Bye!

today, i celebrate this accomplishment
in doing so, i lay aside grief, stare lyme down, and this clears the way for me to see the miracle that this is...

that this disease has not hijacked him. 
my kids - 2007
it may steal his mind, his body, his ability but it has not stolen him.
it has not snatched the essence of who he was before lyme.

he has lyme 
it does. not. have. him.
his determination 
his perseverance 
his courage
his dreams
his humor

Grade 1 sporting his coveted "baller 'fro"

his smile 
his spirit...
he remains as sweet, soft, and sensitive as he always was.

in march he told me he'd like to grow out his hair so that he can donate it to locks of love. 

in the midst of his suffering, he thinks of others.

i learn a lot from him. 
i set out to teach him but it is he who teaches me.

Sparky and me - Santa Cruz, Feb 2013

1 comment:

lymebegone said...

Oh wonderful Parker- teacher and student.
Oh wonderful mom- teacher and student.
You are not Lyme disease......no matter what it steals from you at times- you are parker and shannon-fighters, warriors, son and mom fighting for a better day where IVs, brain hi-jacks,pain and agony are NOT part of your day to day existence.
You both teach us as well. Thank you for continuing to put yourselves out there, to show vulnerability and humour and pain- so the rest of us can learn what it is to be human, to embrace suffering, and to squeeze the life out of hope- waiting for a better day!!
And by the way- in some other life I was a reading and writing teacher- your writing ROCKS Parker and I love that you are so determined. Lyme can never take that from you, and all that perserverence is not in vain. keep hanging on!!
love christine