Scrapbook

My 10th stroke-a-versary

10 years! Wow! A lot has happened…here are some highlights of the last 10 years–Some of the things listed below weren’t “achievements”, but highlights (like seeing Donny Osmond in concert):

Journalling on the scrapbook pages:

lemonade-2004-web
2004:
“The eyes are the window of the soul” Mary Anne Radmacher

• I’m alive, after a nearly fatal brainstem stroke in March 2004.
• In April 2004, I began showing voluntary neck movement to my right, & by May, I could move my right thumb and came home from the hospital at the end of the month.
• In Sept. 2004, the LDS (The Church of Jesus Christ of Latter-Day saints) prophet, President Monson wrote to me.
• In Sept. 2004, I started to develop significant movement in my right arm, so in Nov. 2004, with the help of several ward members, I went to the temple for the 1st time post-stroke.
• In Sept. & Oct. 2004, (this was a huge deal), I started to fingerspell & use a modified sign language, instead of blink spell.
• By Nov. 2004, I had gotten rid of all my tubes (trache/breathing tube–August, catheter—Sept., & feeding tube—Nov.).
• In Dec. 2004, I was the proud owner of my 1st power wheelchair!
• On New Year’s Eve I received my 1st calling/volunteer job (in the LDS church) post-stroke, as co-teacher with Mark as the teacher of the 8 year olds (Zach’s CTR8 teacher in primary).

lemonade-2005-web2005:
“When life hands you lemons, always ask for sugar.” Anonymous

• In Jan. 2005, I start doing knee bends w/help (someone pulls out my knees, & I stand up) while at a 75 degree tilt on the tilt table.
• In Feb. 2005, a friend from church taught me how to watercolor.
• On March 14, 2005, I posted for the 1st time on my website. Mark had introduced the computer about 5 months earlier, but it took that long to have the strength & ability it required to feel capable of posting.
• In March 2005, if I don’t think about it, on occasion, I am able to produce word sounds.
• April 2005, saw my long time “love” (Donny Osmond) in concert.
• In May 2005, I was introduced to digital scrapbooking.
• In June 2005, I moved to a warmer climate, where we were building an accessible home (which we moved into in Dec. 2005), & MK assumed his role as my primary caregiver & a full-time dad w/o help.
• In July 2005, I started playing the piano again, 1-handed.
• In Aug. 2005, I started moving my left shoulder (where there has been absolutely NO movement since my stroke).
• In Sept. 2005, I was asked to be co-Activity Day Leader at church, where I taught the 8-12 year old girls at church through spiritual activities.
• In Oct. 2005, I started a digital scrapbook class
• In Nov. 2005, I made 3 pies from scratch (apple, ice cream, & pumpkin)!

What are some of the most valuable lessons our parents have taught you?

I would have to say that one of the most valuable lessons I have learned growing up is to work hard and to never give up – try and try again. Or, as the little blue engine would say, “I think I can, I think I can, I think I can.” Even when the going gets tough, or when you are too shy to try one more time… you aren’t allowed to give up — things always seem to work out in the end if you have faith, say prayers, and believe in yourself. I learned this through tough experiences in my own life where mom and dad helped me to continue on, no matter how hard it seemed. I also learned it by watching them through their examples and their trials and happy times in life. There is nothing so strong of an influence to a child as a parent’s day to day actions.

lemonade-2006-web2006:
“I am always doing things I can’t do, that’s how I get to do them.” Pablo Picasso

• Feb. 2006, I discovered that I have PBA (which is why I laugh/cry uncontrollably).
• Around June 2006, I started music therapy, & can grunt vowels–I cannot yet say stuff on the spot or if I am asked to say something.
• In June 2006, I began my current website/blog.
• Sept. 2006, I could stand &, if I was held right, I could walk in the pool.
• Oct. 2006, I took aquatic (swim) therapy.
• By Oct. 2006, I have reduced the number of times I need to be turned at night to once at night.

lemonade-2007-web2007:
“Achievement—only those who dare to fail greatly can ever achieve greatly.” Robert F. Kennedy

• Feb. 2007, my new, & current, website began.
• March 2007, all my kids are beginning to understand my ASL
• In May 2007, I met the presidential candidate, Mitt Romney.
• Aug. 2007, I was asked to be the Ward Historian, & keep a record of what we do, at our LDS church.
• In Oct. 2007, I was a presenter at an international doctor conference in Cleveland, OH.
• I was published in the April/May 2007 issue of Simple Scrapbooks Digital Scrapbooking magazine.

lemonade-2008-web2008:
“All things good to know are difficult to learn.” Mary Anne Radmacher

• Feb. 2008, I figure out that I can suck through a straw!
• In the spring of 2008, I was called as an Asst. Ward Music Chairperson, & find special musical numbers for the Sunday Meetingin our LDS church.
• In July 2008, I started to play the recorder & increase my breath support.
• In Sept. 2008, my article “Primary Songs Blessed Me,” was published in the Ensign, a church magazine for The Church of Jesus Christ of Latter-Day saints.
• In Oct. 2008, the LDS prophet, President Monson wrote to me again, & actually remembered me!
• In Dec. 2008, I performed in a church play, as the angel Gabriel, who announces christ’s birth.

lemonade-2009-web2009:
“It’s kind of fun to do the impossible.” Walt Disney

• In Feb. 2009, with the assistance of a computer program, I finally can read all of my own emails (instead of waiting to have them read to me), regardless of the font size!
• April 2009, I touched the top of my head while sitting!
• May 2009, I blew out a candle.
• June 2009, though I’ve done it on rare occasions since 2005, now, even if I am not sitting “exactly right,” I am able to use my right arm to pull myself so I can lean forward & sit back up.
• In Nov. 2009, I was asked to monthly teach the 12-18 year old girls at church

lemonade-2010-web2010:
“The greater the difficulty, the more glory in surmounting it.” Epictetus

• March 2010, I independently feed myself a whole meal, without using an arm support.
• April 2010, I start being capable of caring for my left hand.
• In June 2010, I spoke to the 12-18 year old girls at the LDS church girls’ camp.
• In Dec. 2010, I rode 2 rollercoasters at Disney World: “Tower Of Terror” & “Aerosmith’s Rockin’ Rollercoaster.”
• Again, in Dec. 2010, I performed in a church play, as the angel who announces Christ’s birth.
• About Dec. 2010, I started smiling with booth sides of my mouth, using the muscles on the left side of my mouth!

lemonade-2011-web2011:
“The flower that blooms in adversity, is the most rare & beautiful of all.” Mulan

• Jan. 2011, I can now say most of the alphabet, many words, & several phrases.
• In Feb. 2011, while casually reading an email from my yahoo stroke group, I find that I was published in a British Medical Journal, as an example of how attitude can affect us, & to show that there is life after stroke…here’s an excerpt:
“…the ability to speak was powerfully predictive of happiness, the researchers found. The odds ratio for having happiness scores of 0 to +5 was 20.47 (95% CI 1.89 to 221.45) among respondents who indicated they could say words or sentences.
Another factor that may help patients maintain a positive attitude is mental discipline, as indicated by blog posts from a patient with locked-in syndrome since 2004.
The patient, an Indianapolis woman whose name is given as Jennifer Ann Lynn, developed the condition at age 30 following a brainstem stroke. Her husband started the blog almost immediately, but Lynn herself began contributing in 2005. She regained some hand movements and was able to control a computer as well as an electric wheelchair.
She also regained some speech ability, but in a post from December 2010, she explained that whispering and shouting were still impossible.
But, Lynn wrote, “I don’t usually let myself think that, [because] it’s dangerous. It’s a matter of perspective: I can’t think, ‘I wish …, I want …,’ or dwell on what I can’t do.”
• In Aug. 2011, I went in the ocean on a family vacation to Destin, Florida.
• Although I’ve been capable of writing short things since 2005, as of Oct. 2011, my handwriting has become more legible & I can write more!
• In Oct. 2011, I was written about in an observation by Jack Rushton, a man I greatly admired.


lemonade-2012-web2012: 

“Blessings come in disguise. And challenges can be a blessing.” Actress Diane Lane

• In April 2012, I gave myself the bread & the water (I’ve been doing just the bread since 2010), without any help, during the sacrament for the 1st time since my stroke!
• In May 2012, I was interviewed & videotaped by Mormon Messages, & in Sept., I literally had 15 minutes of fame in a Mormon Messages video on you-tube.
• Sept. 2012, one of the greatest blessings in disguise: my falling off of a curb in June resulted in a hospital trip, which directed me to a doctor who gave me medicine for my PBA!
• In Dec. 2012, I was published in a Fortune magazine article, with my dad.

lemonade-2013-web2013:
“God has equipped us to do just what He wants us to do?When God gives an assignment, it comes with His enablement.” Dave Branon

• As the year progressed I began to have enough control over my eyesight that, while double vision remained, by the fall of 2013, I could read smaller font, & books on my mini iPad.
• Throughout this entire year, I really grew in my speech capabilities, so I was now able to say more complex & intelligible words & sentences, & often be understood by others.
• In March 2013, I was given a new calling as compassionate service leader, helpingorganize service with the women (18 years old & up) at church
• As of Sept. 2013, I’m finally independently feeding myself for every meal in our home, & most meals when we go out.
• About Oct. 2013, I start doing knee bends on my own while standing straight up on the tilt table.
• In Nov., I started equine therapy, & went horseback riding! Within 6 lessons, my trunk support was at least twice as strong!

lemonade-2014-web2014:
“Anyone who says it can’t be done, is usually interrupted by someone doing it.” Anonymous

• I was published in the Jan./Feb. Issue of LDS living magazine
• In February, I met Elder Oaks, an apostle of the Lord, from The Church of Jesus Christ of Latter-Day saints.
• As of March 2013, I start having conversations & recieve help from people who don’t know ASL, but understand me just fine

How ru feeding ur self?

PRACTICE, PRACTICE, PRACTICE, & LOTS OF TRIAL & ERROR! SEVERAL OLD POSTS COME 2 MIND, LIKE DUMPING WATER ALL OVER MYSELF AT CHURCH!) BUT “When defeat comes, accept it as a signal that your plans are not sound. Rebuild those plans and set sail once more toward your coveted goal.” Author Unknown)

YEARS OF BABY STEPS & LOTS OF PATIENCE. I STARTED SMALL & I HAD AN ARM BRACE AT 1ST. I EVENTUALLY GOT A “TREAT MACHINE” (IT LOOKS LIKE A GERBIL FEEDER, & I TWIST A DIAL, SO SNACKS FALL IN A BOWL). THERE’S A PICTURE OF BOTH ON MY BLOG, ON A SCRAPBOOK PAGE CALLED“JENNY’S WAY”–http://www.jenannlynn.org/?page_id=648 . ANYWAY, I KEPT FEEDING MYSELF, & MY ARM GOT STRONGER. MEANWHILE, MY MUSIC THERAPIST HAD ME LIFTING 1 LB. WEIGHTS 2 MUSIC, WORKING ON MY GRIP, & WORKING ON MY AIM. I WAS A MESS AT 1ST, & 4 A WHILE, I STOPPED, CUZ IT BOTHERED ME THAT THERE WAS MORE FOOD AROUND ME, THAN IN ME! BUT WHEN I WAS LOSING WEIGHT, I DIDN’T CARE ANYMORE, & WATCHING A BABY GROW INTO A TODDLER HAS ITS BENEFITS! ? STILL, EVERYTIME I EAT, I HAVE 2 PRACTICE THE ANGLE 2 HOLD FOOD ON A UTENSIL—SO THE 1ST FEW BITES ARE MESSIER. HENCE, I PREFER MY HAND! LOL

WHAT’S IMPORTANT 2 REMEMBER IS 2 ENJOY & APPLAUD URSELF 4 EACH SMALL ACCOMPLISHMENT ALONG THE WAY, & 2 ENJOY WHAT U HAVE, CUZ IT MAY BE AS GOOD AS IT GETS, BUT DON’T LET THAT MAKE U GET COMPLACENT!
“Aim at the sun and you may not reach it; but your arrow will fly far higher than if you had aimed at an object on a level with yourself.” Author Unknown

THEN WHEN IT GETS BETTER, U CAN BE SURPRISED & THRILLED!

“Believe in yourself. Believe in your capacity to do great and good things. Believe that no mountain is so high that you cannot climb it. Believe that no storm is so great that you cannot weather it. You are not destined to be a scrub. You are a child of God, of infinite capacity.”
Gordon B. Hinckley

SOPHIA SCRAPBOOKS

A FEW YEARS AGO, WHEN I WAS TAUGHT POWERPOINT, I REMARKED HOW MUCH IT WAS LIKE DIGITAL SCRAPBOOKING, & I CAUGHT ON ABNORMALLY FAST.

A WHILE AGO, MY 9 YEAR OLD DAUGHTER, SOPHIA, STARTED MAKING TONS OF POWER POINTS, THAT REMINDED ME OF DIGITAL SCRAPBOOK. I ASKED IF SHE WANTED 2 LEARN 2 DIGITAL SCRAPBOOK (A FEW YEARS AGO, I TAUGHT HER TRADITIONAL SCRAPBOOKING), & SHE WANTED 2 LEARN. FOR 2 DAYS, I TRIED 2 TEACH HER IN ADOBE PHOTOSHOP ELEMENTS, BUT IT WAS SUPER TOUGH!

2 DAYS LATER THOUGH, SCRAPGIRLS INTRODUCED THEIR SCRAPBOOK PGS. IN POWERPOINT! I HAVE SHOWN SOPHIA, AND SHE IS A NATURAL! THE TIMING & THE PROGRAM THAT WAS USED COULDN’T HAVE BEEN MORE PERFECT!

HERE ARE THE .JPEGS OF HER 1ST DIGITAL SCRAPBOOK PAGES:
( the journalling says:
TOP, LEFT– PAGE 1
“While I waited for my ears to be pierced
I tried not to scream. I felt scared and
Worried. My teeth chattered and I
Couldn’t feel my arms.”
TOP, RIGHT–PAGE 2
“The ear piercers actually used a tool that
Looked like a Styrofoam stapler! (Which
made me even more scared!)”
BOTTOM, LEFT–PAGE 3
“Ok, if anyone asks, the reason I
Am closing my eyes is that my
Sister told me to (Sisters!)
Because it would “hurt less.””
“October 2008”
BOTTOM, RIGHT–PAGE 4
“After all, it turned out great and it did not hurt at all.”
“Now I can wear the most beautiful earrings in my ears!”)

THE LONGEST POST EVER!

I HAVE BEEN TRYING 2 PUT FAMILY 1ST. I HAVE NOT FOUND THE PROPER BALANCE: I AM 1 WHO NEEDS LOTS OF “ME” TIME (I LIKE BEING ALONE & EMAILING PEOPLE & JOURNALLING).

BUT IN SEARCHING 4 THIS BALANCE, I TRY 2 NOT USE THE COMPUTER WHEN THE KIDS ARE THERE, UNLESS THEY USE IT, WE USE IT 2GETHER, OR THEY WATCH TV. I’VE LEARNED THAT WHAT I’VE MISSED IS STUFF LIKE THE SMALL TALK THAT OCCURS WHEN U DRIVE AROUND, COOK TOGETHER, PLAY A PING PONG GAME, ETC. THE TIMES THAT I JUST SIT THERE & LISTEN (SINCE I CAN’T CHIME IN VOCALLY), SO I USED TO “DISAPPEAR.” SO, WHILE I’VE STARTED ABOUT 4-6 POSTS, I NEVER FINISH THEM! LOL (BUT I RECENTLY HAD LOTS OF “ME” TIME, SO I AM PUTTING THESE ALL 2GETHER, & THIS POST WILL BE SUPER LONG!

SINCE I’M AROUND MORE, I HAVE BEEN HELPING MORE W/HOMEWORK (IT’S GREAT THAT MY DOUBLE VISION CAN NOW BE CONTROLLED WELL ENOUGH 2 READ SOME SMALLER FONTS—IT’S HARD, & TAKES TIME & PATIENCE, BUT IT CAN BE DONE!)

I’VE ALSO BEEN ATTENDING A LOT OF THINGS THAT I WOULD NORMALLY NOT DO. I HAVE CONTINUED 2 BE SUPER UPSET BY PEOPLE “TEMPORARILY” PARKING IN THE HANDICAPPED AREAS (PEOPLE JUST DO NOT LEARN, & I SWEAR I’M GOING 2 DIE 1 DAY WHILE I WAIT IN THE STREET 2 GET IN MY VAN!) BUT I’M HAPPY 2 SAY THAT MY MINISTER (BISHOP) WILL BE PUTTING UP PLAQUES THAT SAY “RESERVED FOR THE DISABLED & THEIR FAMILIES.” (PERSONALLY, I’D LIKE IT IF EVERY LDS WARD CHURCH BUILDING IN THE UNITED STATES HAD THIS PLAQUE!)

ANYWAY, ONE OF THOSE THINGS THAT I’VE ATTENDED, & NORMALLY WOULDN’T ATTEND, WAS SOPHIE’S SCHOOL CARNIVAL. LUCKILY, PLACES ARE USUALLY FORCED 2 BE SOMEWHAT ACCESSIBLE, BUT I HAVE GONE 2 THINGS LIKE THIS WHERE IT’S ALMOST PAINFUL 2 GO, BECUZ I FEEL LIKE I HOLD MY FAMILY BACK: THEY CAN’T GO SHORTER WAYS (DUE 2 CURBS), I DON’T DO WELL IN CROWDS, ETC…

BUT JUST AS I WAS DOUBTING THIS NEW PHILOSOPHY OF “FAMILY 1ST” AS MK & SOPH WERE BUSY, & I SAT THERE ALONE WONDERING WHAT I WAS DOING, SOPH FOUND ME, & THANKED ME 4 COMING!

HOW COULD I 4GET? AS THE KIDS GET OLDER, THEY EXPRESS IT LESS, BUT IN THE LAST 7 ½ YEARS, SEVERAL TIMES I’VE EXPEIRIENCED HOW MY KIDS DON’T CARE WHAT I CAN/CAN’T DO, OR HOW THEY SACRIFICE THINGS 4 ME, BUT JUST THAT I’M THERE!

THIS SHOULD NOT BE SO HARD 4 ME 2 COMPREHEND: MY SOCIAL SIDE USUALLY INVOLVES PEOPLE JUST BEING NEAR ME, & HANGING OUT (ISN’T THAT THE SAME? OUR CAT, TIGER USED 2 PROVIDE THIS COMPANIONSHIP, BY SITTING BY ME ALL DAY, BUT HE’S GONE NOW–& I REALLY MISS HIM!). SO, LATELY, I HAVE BEEN TEACHING MY DAUGHTER, SOPH, TO DIGITAL SCRAPBOOK—I NOTICED SHE WAS MAKING LOTS OF POWERPOINT PROGRAMS IN A WAY THAT’S A LOT LIKE DIGITAL SCRAPBOOKING. IT’S CHALLENGING TO TEACH SOPH (THERE’S SOME NEW TERMS), BUT WHEN SHE GETS IT, SHE CATCHES ON FAST, SO IT’S FUN.

KIDS THESE DAYS JUST INSTINCTIVELY PICK UP ON TECHNOLOGY, & I ABSOLUTELY LOVE THE COMPANY (ISHE USES A LAPTOP IN THE SAME ROOM, SO WE CAN HANG OUT IN THE SAME ROOM, LISTENING TO MUSIC, W/AN OCCASIONAL JOKE/CONVERSATION).

SOME ARE AWARE THAT MY HUSBAND WAS RECENTLY ASKED TO BE AN EARLY MORNING SEMINARY TEACHER AT CHURCH (HE TEACHES THE 14 & 15 YEAR OLDS ABOUT THE SCRIPTURES AT 6 AM). MANY HAVE ASKED ME HOW IT’S GOING, SO RATHER THAN TYPING THE RESPONSE AGAIN & AGAIN, I DECIDED 2 ANSWER THE QUESTION HERE:

SEMINARY MORNINGS GO REAL WELL. MK ENJOYS TEACHING THE YOUTH, & HE’S GOOD AT IT. ZACH IS IN MK’S CLASS, & I HOPE MK TEACHES ALL MY KIDS! (ONCE THE GIRL’S ARE 12 YEARS OLD, I START TEACHING THEM TOO, SO THE GIRL’S MAY GET “DOUBLE DUTY!” LOL)

JESS IS PRETTY SELF-SUFFICIENT IN THE MORNINGS. BUT JESS CLAIMS THAT SOPH WOULD BE LOST W/O ME! I DON’T DO MUCH, BESIDES REMIND SOPH OF THE TIME, & KEEP HER ON TASK. HERE’S THE LIST I MADE 4 SOPHIE’S MORNING ROUTINE(THE ACTUAL LIST IS MUCH “PRETTIER!”):

6:00-6:30-WAKE AND SHOWER (HANG UP TOWEL)
OR, IF YOU SHOWERED THE NIGHT BEFORE
6:30-6:40—(WAKE AND) GET DRESSED AND PUT CLOTHES IN THE HAMPER OR IN YOUR DRESSER DRAWER
6:40-6:50—CLEAN YOUR ROOM AND CLOSET AND GET YOUR SHOES ON
DAY OF THE WEEK areas of focus
MONDAY–clean the corner under your bookshelf, pick up your clothes
TUESDAY–clean the top of your desk, organize your books, pick up your clothes
WEDNESDAY–clean your closet, pick up your clothes
THURSDAY–clean the bunk bed stairs, general pick-up where needed, pick up your clothes
FRIDAY—clean inside your desk, pick up your clothes
SATURDAY–clean under your window, pick up your clothes, do laundry (sort into piles of white, light, & dark colors first)
6:50-7:00–BRUSH HAIR
7:00-7: 15 –EAT (if you are 10-15 minutes ahead of schedule, you may cook eggs)
7:15-7:20- GET YOUR SCHOOL SNACK AND GATHER YOUR SCHOOL STUFF
7:20-7:30—CLEAN KICHEN, BRUSH TEETH, AND HAVE FAMILY PRAYER (remember to bless those who can’t be there!)
THERE IS NO COMPUTER OR TV. ONCE YOU ARE READY, IF U HAVE ASKED FOR PERMISSION, YOU MAY BE ABLE TO DO COMPUTER, IF THE TIME PERMITS IT.

I LET SOPH TRY 2 GET HERSELF UP, BUT BY 6:15, I MAKE SURE SHE GETS UP, & THEN SHE’S PRETTY SELF-SUFFICIANT FROM THERE ON OUT, NOW. (IT HELPS THAT MK IS NOT LIKE THE “USUAL MOM,” SO THE KIDS HAVE BEEN GETTING UP & GETTING READY ALONE 4 YEARS!) DIFFERENCE IS THAT SOPH SHOWERS, & IS READY ON TIME OR EARLY NOW, INSTEAD OF LATE! (BECUZ I KEEP ON TOP OF HER, & REMIND HER OF THE TIME, & ASK IF SHE’S THERE ON THE LIST.) BUT B4 I MADE THE LIST, I OBSERVED HER FOR 2 DAYS, SO I COULD ESTIMATE HOW MUCH TIME SHE NEEDED, IN ORDER 2 COMPLETE A TASK. USUALLY, AFTER SHE FINISHES A TASK, SHE REPORTS 2 ME (LIKE I SMELL HER BREATH, SEE HER HAIR BRUSHED, ETC.–I EAT W/HER–I CAN USUALLY FEED MYSELF MEALS, IF FOOD IS READY 4 ME, & KEEP HER ON TASK, SO SHE DOESN’T STARE IN THE FRIDGE FOR 5 MIN.)

IN ADDITION, I AM TRYING 2 TALK, NOT SIGN, IN THE MORNINGS (AT TIMES, I IMAGINE MY HANDS ARE CUT OFF!), BECUZ SIGNING SERIOUSLY SLOWS THINGS DOWN! SOPHIE IS AMAZING AT UNDERSTANDING ME! THERE ARE SEVERAL CONSONANTS I JUST CAN’T SAY, YET SHE MANAGES 2 STILL FIGURE ME OUT!

UNFORTUNATELY, I SEEM 2 HAVE “SPEAKING CYCLES/PHASES.” SO SOME DAYS ARE BETTER THAN OTHERS—1 DAY, I’M AT ABOUT A “7,” ON A 10 POINT SCALE, BUT BY NEXT WEEK, I COULD BE AT A “3.” IT’S SCARY 2 GO 2 BED AT NIGHT, ESP. AFTER A “GOOD TALKING DAY,” BECUZ I NEVER KNOW IF I’LL BE ABLE 2 TALK THE SAME THE NEXT DAY! & IT’S SO FRUSTRATING, BECUZ WHEN OTHERS HAVE SEEN ME ON A GOOD DAY, I FEEL EXPECTED 2 ALWAYS TALK WELL, & I JUST CAN’T ON A “BAD” DAY!

IT TENDS 2 BE HARDER WHEN, (AMIDST OTHER REASONS) I’M TIRED–& I HAVEN’T BEEN SLEEPING WELL. BUT MOSTLY, I REALLY NEED 2 BE AROUND OTHERS, INVOLVED IN CASUAL CONVERSATIONS, ON OCCASION, WHERE THERE’S NO PRESSURE 2 TALK, BUT IT GETS ME TALKING! YET INTERESTINLY, SINCE THE LAST CALLING B4 MY STROKE WAS AS THE PRIMARY CHORISTER, THE PRIMARY SONGS ARE THE EASIEST 4 ME 2 “SING” ALONG TO, HERE & THERE, & IS A GREAT PRACTICE 4 MY SPEECH, THOUGH NOTHING BEATS JUST BEING WITH OTHERS, & TALKING!

MY “TIRED HOUR” IS 3 PM, & I FALL DOWNHILL. & I’M NOT SURE WHY, BUT MY HARDEST IS IF I LEAVE MY HOUSE. I’M GETTING BETTER AT MY MOM’S, & SOMETIMES MY CHURCH–BECUZ I’M AT THEM THE MOST– BUT I’M QUIET OR SILENT ELSEWHERE.

BACK IN JAN., I HAD A SPEECH THERAPIST COME & INTRODUCE A PROGRAM THAT REALLY HELPED, BUT SOON AFTER, SHE HAD A FAMILY CRISIS. SHE TRIED 2 STILL COME, BUT COULDN’T, SO I GOT SOME COMPUTER SPEECH PROGRAMS (FROM BUNGALOW), WHICH HAVE REALLY HELPED! (HOWEVER, WHEN MY COMPUTER CRASHED, I BROKE MY PRACTICE ROUTINE, & I CAN’T GET BACK INTO THE HABIT, ESP. WHEN IT TAKES AWAY FROM THE “ME” OR FAMILY TIME!) I NO LONGER HAVE A LIST OF WORDS I CAN SAY: I JUST TRY 2 SAY ANYTHING, WHENEVER I CAN, & IF IT SOUNDS BAD, I SIGN IT. BUT IF I LIMIT TO “YES,” “NO,” & 5 WORDS OR LESS PHRASES, I CAN VOCALLY SPEAK AN ENTIRE CONVERSATION, IF IT’S A “GOOD” DAY. I CAN’T EXPLAIN THE JOY I FEEL WHEN OUT OF NO WHERE, I ASK 4 HELP, & SOME1 COMES, OR I ASK 4 WATER, & I GET IT, OR I ENTER A ROOM & HAVE 2 BE ACKNOWLEDGED, BECUZ I SAID “GOOD MORNING!”

WHILE THERE’S 1000’S OF THINGS THAT I SAY, NOT ALWAYS CARING IF I’M UNDERSTOOD. IF I DO CARE, YET I WASN’T UNDERSTOOD, I SIGN OR WRITE IT OUT (I PRACTICE MY HANDWRITING SO MUCH, I USE MOTOR MEMORY & CAN EVEN WRITE W/O SEEING!). BUT I TALK A LOT 2 MYSELF! 4 EX., B4 I COULD TALK MORE, I SEEMED SO PATIENT AS I STARED AT MY COMPUTER & WAITED! NOW, I VOCALIZE WHAT I WAS ALWAYS THINKING: “ANY DAY NOW!” I DON’T CARE IF I’M UNDERSTOOD WHEN I SAY IT, & I DON’T WANT 2 SPELL IT AFTERWARDS—BECUZ IF MY VOCALIZING THINGS LIKE THAT NEED ME 2 SIGN WHAT I JUST THOUGHT B4, THEN IT TAKES UP TIME (THAT I DON’T WANT TO USE UP), CAUSING ME 2 NOT TRY SAYING THINGS (& I LIKE TRYING STUFF–SOMETIMES IT SURPRISES ME WHAT WORKS!) SO I JUST WAVE MY HAND AS IF 2 SAY “NEVER MIND,” OR PEOPLE ASK IF I NEED 2 TELL THEM IT.

THOUGH I DON’T HAVE A SPEECH THERAPIST, SOPH OFTEN IS MY BEST SPEECH THERAPIST, W/O KNOWING IT. SHE OFTEN EXPECTS ME 2 REPEAT THINGS SHE SAYS, MAKES LISTS OF NONSENSE WORDS 4 ME 2 SAY, THAT FOCUS ON LETTERS THAT I NEED 2 PRACTICE, SINGS W/ME (HARD 2 BELIEVE THAT IT STARTED W/ME SINGING “OLD MCDONALD” IN MUSIC THERAPY: I SANG “EIEIO” & “MOO”), & STRETCHES MY VOCAL CHORDS, BY ALWAYS MAKING ME LAUGH. OR SOMETIMES WE PLAY A GAME: SOPHIE HAS HAD ME SAYING NUMBERS & COLORS IN A GAME, & SHE CLOSED HER EYES, & I DIDN’T MOVE UNTIL SHE GUESSED IT, OR ONCE WE PLAYED CANDY LAND,I WOULD DRAW A CARD, & HAD 2 SAY THE COLORS. & AS I POINTED OUT, WE HAVE FOUND THAT SINGING PRIMARY SONGS IS A GREAT WAY FOR ME TO WORK ON MY SPEECH, SO SOPH HAS ME SING W/HER!
SPEAKING OF SINGING, I DO HAVE A MUSIC THERAPIST. WE HAVE FOCUSED ON MY SIGNING & BREATHING. ODDLY, LAYING DOWN, I CAN SOMEHOW KEEP AIR FROM ESCAPING OUT OF MY NOSE, & SAY LETTERS LIKE “K,” “F,” & “S.” BUT IF I HAVE EVEN THE SMALLEST INCLINE & FIGHT GRAVITY, OR “SQUISH” MY DIAPHRAGM, I CAN ONLY SAY THOSE LETTERS IF I PLUG MY NOSE!

THEN A WHILE AGO, I WAS VISITING AT MY SISTER’S HOUSE, & I WAS ALONE (THE PEOPLE THERE WERE IN ANOTHER ROOM & BUSY), SO I OPENED UP A ZIPLOC BAG, TOOK OUT A ROLL TO EAT, & RESEALED THE ZIPLOC, REMOVING THE AIR! DON’T KNOW IF I CAN REPEAT THAT 1 (I HAVE TRIED BEFORE 2 OPEN ZIPLOCS WITH MY TEETH & MY HAND, BUT I USUALLY SLOBBER TOO MUCH! LOL)

I DID SO WELL, I DECIDED 2 SEE IF I COULD UNSCREW THE CAP ON A TUB OF PRETZELS & GET AT THE PRETZELS…I DIDN’T WANT ANY PRETZELS, BUT IF I HAD WANTED ANY, I COULD’VE HAD 1!

THEN, ON OCT. 4TH THERE WAS A KNIFE & A LOAF OF BANANA BREAD IN MY REACH, & MY CLOTHING WAS ALREADY PROTECTED (I’D HAD SOME BREAD, BUT WANTED MORE, BUT NO1 WAS THERE). BUT KNIVES TOTALLY FREAK ME OUT, SO THOUGH I HAVE FIGURED (FOR A WHILE NOW) THAT I COULD CUT MYSELF A PIECE OF BANANA BREAD, I’VE NEVER DONE IT… BUT THIS TIME I DID IT, W/O CUTTING MYSELF! IT WASN’T A GREAT CUT, BUT I WAS SURPRISED AT HOW WELL I DID, & NO MATTER HOW IT’S CUT, IT TASTES THE SAME!

EITHER FOOD MOTIVATES ME, OR THERE’S SOMETHING ABOUT BEING ALONE…I’LL GO WITH THE LATER, SINCE I RECENTLY LOST A LOT OF WEIGHT, BUT WAS STILL MOTIVATED & DOING NEW THINGS!

SOMETIMES I AM TOO CONFIDENT IN MY ABILITIES (SINCE I COULD DO IT B4, I ACTUALLY ENVISION MYSELF STILL DOING IT!), & SOMETIMES I AM NOT AWARE OF WHAT I’M CAPABLE OF…BUT MK INSTILLS FAITH IN ME THEN, BECUZ HE KNOWS THE MOST OF WHAT I’M CAPABLE OF (OBVIOUSLY), & ENCOURAGES ME 2 DO IT. I THINK MK REALIZES I CAN DO STUFF, BUT NOT ALWAYS 2 THE DEGREE THAT I DO SOME THINGS. PLUS, I SEEM 2 WORK AT A HIGHER LEVEL WHEN ALONE…MAYBE IT’S “SURVIVAL MODE?” OR MAYBE I’VE HAD MORE CHANCES 2 PRACTICE, LIKE IN THERAPY, & NOT REALIZED THAT I’VE BEEN CAPABLE QUITE A WHILE…? THEN, THERE ARE PEOPLE WHOSE REACTIONS INSPIRE ME 2 DO MORE/TRY AGAIN!

I BELIEVE AS I BECOME MORE CAPABLE, MK LEAVES ME ALONE MORE (EVEN IF IT’S JUST DIFFERENT FLOORS OF THE HOUSE, WHERE HE’S JUST A RING AWAY—I HAVE A DOORBELL ON MY CHAIR, WHERE THE # OF RINGS, CALLS CERTAIN PEOPLE). & BEING ALONE MEANS I AM PROVIDED W/MORE OPPORTUNITIES 2 BE MORE SELF-SUFFICIENT. IT’S EASY 2 LET OTHERS DO STUFF, & SOMETIMES I END UP NEEDING HELP (THOUGH I’M 2 STUBBORN 2 ASK 4 HELP), BUT WHEN I’M ALONE, I’M FORCED 2 FIND NEW WAYS 2 ACCOMPLISH A TASK, IF THERE’S A POSSIBILITY (LIKE I CAN’T EVEN TRY 2 WALK YET, & THAT IS NOT A CURRENT POSSIBILITY, SO OTHERS HELP W/THE STEPS I NEED 2 MAKE IT A POSSIBILITY, & 4 NOW, MOVE ME). BUT THERE’S SOME THINGS MK JUST EXPECTS ME 2 DO, & IT MOTIVATES MY PERSONAL FAITH & CONFIDENCE, & I DO IT (LIKE WHEN I STARTED OPENING DOORS A WHILE AGO, IT ALL STARTED WHEN MK HAD LOCKED HIMSELF OUT OF THE FRONT DOOR, & THOUGH THAT DOOR IS HEAVIER, HE HAD NO DOUBT THAT I’D LET HIM IN, WHICH I DID!)

LASTLY, I AM VERY FORTUNATE . SOMETIMES, MK’S TALENTS SEEM LIKE THEY WERE GOD GIVEN 2 DO WHAT HE NEEDS 2 DO, 4 ME AS WELL. JUST A FEW EXAMPLES:

HE’S A VERY TALENTED WOODWORKER, WHICH HAS HELPED HIM MAKE THINGS PERSONALLY ADAPTED 2 ME, & HELPED ME ACCOMPLISH MORE, & BE MORE INDEPENDENT. THINGS CAN BE A HALLOWEEN COSTUME, MY KEYGUARD, MY COMPUTER DESK…U NAME IT!
HE’S VERY ARTISTIC, CREATIVE, ETC. HE MAKES AMAZING BIRTHDAY CAKES (I USED 2 DECORATE CAKES, & I’D BE DISAPPOINTED IF THIS STOPPED), HELPS W/SCHOOL PROJECTS (STUFF I THOUGHT I’D DO), HE ALSO MAKES MOVIES 4 ME . IN AUGUST, MY HUSBAND MADE THIS VIDEO TO INTRODUCE ME TO ALL THE NEW TEENAGE GIRLS I WOULD TEACH AT CHURCH. IT HAS PICTURES OF ME, ME SINGING AT BYU (I AM THE SOPRANO/HIGH VOICE THE FIRST 3 VERSES, & THE MELODY/SOLO ON THE FOURTH VERSE), & I INTRODUCE MYSELF (FROM A RECORDING I MADE AT 11 YEARS OLD. I THOUGHT U MAY ENJOY IT:

I’M ALIVE!

SORRY I HAVEN’T BEEN 2 CHATTY… I HAVE BEEN CRAZY BUSY. IN ADDITION 2 WHAT I DID IN JUNE (WENT 2 A WEDDING 4 MY YOUNGEST SIBLING, MIKE,IN UTAH & WENT 2 IDAHO), I’VE GOTTEN READY 4 MY 13 YR. OLD SON, ZACH’S, EAGLE COURT OF HONOR (& MADE ABOUT 100 SCRAPBOOK PAGES), WENT 2 MY SIS., MISSY’S WEDDING IN VERMONT, AS THE MATRON OF HONOR, WENT 2 DALLAS 4 A WEEK-END W/NO COMPUTER, & THERE’S BEEN LOTS IN BETWEEN…I’M SLOWLY GETTING BACK 2 “NORMAL,” & I NEED 2 GET BACK AMONG THE LIVING…SO I AM NOW PLAYING CATCH-UP!

2 ANSWER ANY QUESTIONS ABOUT ZACH’S EAGLE COURT OF HONOR:

I DIDN’T REALIZE ANY1 COULD GET THEIR EAGLE B4 THEY WERE 14 YRS. OLD, & PRE-STROKE I MADE PLANS 2 SCRAPBOOK 4 ZACH’S EAGLE. & UNFORTUNATELY, SINCE THIS WAS THE ONLY ATTAINABLE PRE-STROKE GOAL, I WAS PRETTY DETERMINED 2 DO IT!

YACKTMAN’S CAN’T DO BIG EVENTS W/O STRESS, SO SINCE I’M 1 (THAT’S MY MAIDEN NAME), & I CAN’T BE HAPPY DOING JUST A LITTLE BIT, I HAD 2 CREATE MY OWN STRESS, BY ACCOMPLISHING THAT PRE-STROKE GOAL BY SCRAPPING 3 ALBUMS: ZACH’S CUB, BOY, & EAGLE SCOUT STUFF. MAYBE I’LL POST AT LEAST 1 CUB SCOUT, 1 BOY SCOUT, & 1 EAGLE SCOUT PG., OR I’LL POST AT LEAST SOME PICS OF THE EVENTS!

THOUGH I HURRIED 2 MAKE LOTS OF SCRAPBOOK PAGES IN 2 MONTHS, ALMOST EVEY SUPPLY 4 MY SCRAPBOOKS WAS BOUGHT PRE-STROKE, WHEN I SCRAPBOOKED TRADITIONALLY, & SCANNED IN. I HAD BEEN ORGANIZING & PLANNING 4 YEARS, BUT B4 MY STROKE, I THOUGHT I HAD 2-6 MORE YRS. 2 DO IT , BUT INSTEAD HAD A FEW MONTHS 2 DO ABOUT 100 PAGES! LOL BUT SINCE ORGANIZING IS MOST OF THE BATTLE, I WAS ABLE 2 PULL IT OFF, SINCE I DID THE HARDEST PART B4!

BUT LET ME GIVE A PLUG 2 http://www.sbtoshare.com , WHO PRINTED MY PAGES IN A HURRY. I CAN’T BEGIN 2 SAY HOW AWESOME THEY ARE!

AFTER ZACH’S SCRAPBOOKS, I WAS ASKED IF THINGS EVER START TO SLOW DOWN A LITTLE…LOL HA. NEVER. I GO FROM 1 THING 2 ANOTHER. I ALWAYS FIND A WAY 2 STRESS! I’M GETTING BETTER: I USED 2 GO CRAZY W/O STUFF 2 KEEP ME BUSY! NOW, I’M BETTER AT RELAXING, TAKING A MOMENT 2 STOP, ETC. BUT IF THOSE TIMES COME, I DON’T KNOW WHAT 2 DO W/MYSELF, & IT NEVER LASTS LONG! EVEN ASW/MY PHYSICAL LIMITATIONS, I ALWAYS HAVE 2 MANY THINGS GOING ON SIMUTANEOUSLY, SO I DON’T START & FINISH, BUT AM LIKE THE ENERGIZER BUNNY, WHO KEEPS GOING & GOING…

BTW, I HAVEN’T COMPLETELY 4GOTTEN U: I RECENTLY ADDED SOME THINGS 2 MY WEBSITE:
• A BOOK
• A BOOK DESCRIPTION
• A “CONTACT ME” PAGE
• AN ASL SECTION, SO PEOPLE CAN “BRUSH UP” ON THEIR “JENNY-ESE” NOW (& MY OWN HAND DID THE ASL CHART)!

SO MY CHAIR WAS BROKEN SUN. NIGHT-WED. MORNING. AFTER 6 YEARS, A W/C BECOMES A PART OF U, SO I FELT A PART OF ME WAS MISSING. IT WAS LESS PAINFUL 2 HAVE GONE THIS TIME, BUT “U NEVER KNOW WHAT’S GONE UNTIL IT’S GONE”, THOUGH! 6 YRS. AGO, I LOST MY VOICE & THE USE OF MY BODY. I HAD NO IDEA WHAT A BLESSING THAT WAS, OR THAT I COULD LOSE THEM. ONLY IN SLOWLY AQUIRING SOME OF IT BACK, HAVE I REALIZED THE ENORMOUS BLESSING.

LONG STORY SHORT, BY A FLUKE & PROMPTING, I FOUND A TRAVEL FOLDING POWER W/C ON EBAY, DIRT CHEAP (LIKE $150) IT NEEDED LOTS OF SMALL REPAIRS & A BATTERY. BUT STILL SPENT ONLY LIKE $600 TO BUY, SHIP, & GET A HEADREST–& USED CHAIRS R $1500-2500 ON EBAY! ONLY BAD THING: IT STANK OF SMOKE & WON’T TILT (& I TILT 2 HELP ME EAT, & RELIEVE PRESSURE ON MY BUTT. I ALSO TILT WHEN I NEED 2 POTTY & HAVE 2 WAIT, WHEN I WATCH MOVIES, & WHEN I LISTEN 2 AUDIO BOOKS–IT’S VERY TAXING 2 SIT UPRIGHT ALL DAY: IN THE HOSPITAL, I COULD ONLY HANDLE A FEW HRS. AT FIRST, & I WAS TILTED, SINCE I HAD LESS CORE MUSCLES!)

I GOT THE FOLDING, TRAVEL, POWER W/C 4 VERMONT—WE WERE FLYING, & WHEN I FLY, I’M STUCK IN A MANUAL W/C (WHICH I DETEST, BCUZ I CAN’T MOVE MYSELF, & GO BACK 2 SQUARE 1, LOSING ALL INDEPENDENCE THAT I’VE GAINED). HOWEVER, IT HAS COME IN VERY, VERY HANDY AS A BACK-UP, WHILE MY CHAIR IS BEING REPAIRED. IT HAS IT’S DRAWBACKS, BUT HOW GREAT 2 NOT BE IN MY MANUAL W/C 4 DAYS!

IN MY REGULAR POWER W/C, I RAREY TILT JUST 2 TILT, YET I CRAVE IT ALL THE TIME! WHILE I THINK I USE THE TILT FUNCTION MORE THAN I REALIZE, I WANT WHAT I CAN’T HAVE! ISN’T THAT HUST HUMAN NATURE?