News

TYPICAL WEEK

DON'T GET USED 2 MY LENGTHY ENTRIES—I TYPE BY USING JUST MY INDEX FINGER TO SLOWLY TYPE EACH WORD. MY KEYBOARD HAS A KEYGUARD-WHICH IS ESSENTIALLY A PIECE OF PLASTIC SO MY HAND CAN REST WHILE I TYPE & NOT PUSH KEYS–IT HAS HOLES DRILLED FOR KEYS. SO, A LONG ENTRY EITHER MEANS THE ENTRY TOOK PRIORITY BECAUSE I FELT THE NEED 2 SHARE, I KEPT TAKING BREAKS & RETURNING 2 IT LATER, OR IT DOUBLES W/SOMETHING ELSE I NEED 2 DO & I CAN COPY IT (LIKE EVERY POST IS COPIED 2 MY JOURNAL) OR I COPIED SOMETHING ELSE, SO I TYPE LESS, & ADAPT IT 2 MY OWN WORDS. I'LL "COPY SOMETHING ELSE, SO I TYPE LESS, & ADAPT IT 2 MY OWN WORDS" AT LEAST 4 TIMES IN THIS ENTRY:

SO WHAT DOES A VERY LIMITED PERSON DO?

A TYPICAL WEEK 4 ME (ALTHOUGH I DON'T CARE 2 BROADCAST SOME THINGS, SO I WON'T MENTION THOSE):

I HAVE A CARETAKER, CARA. SHE & I ARE VERY SIMILAR, BUT ONLY COMES 2-3 TIMES A WEEK. MY HUSBAND, MARK, MOSTLY CARES 4 ME. THIS INCLUDES THAT HE ROLLS ME ONCE AT NIGHT.
MON.—DAILY, I WAKE BETWEEN 4-6:30 AM (POOR MARK!). CARA'S HERE, FROM 9:15-3:15. DINNER AROUND 5 DAILY. IF U R LDS, U KNOW OF FAMILY HOME EVENING (FHE). BASICALLY, IT'S FAMILY TIME.
TUES.—MORNINGS, LIKE 7:50/8-9, I DO SWIM THERAPY AT HOME.
WED.—AT 10:30-11:30ISH, I HAVE MUSIC THERAPY. 2 TIMES A MONTH, I DO MY CALLING A CHURCH AS ASSISSTANT ACTIVITY DAY (AD) LEADER (ACTIVITIES FOR ABOUT 10 GIRLS, 8-9 YRS. OLD) FROM 6-7 AT CHURCH. SOMETIMES, ON A WEEK OF NO AD, I ATTEND A SCOUT PACK MEETING AT 6-7 FOR ZACH.
THURS.— MORNINGS, LIKE 7:50/8-9, I DO SWIM THERAPY AT HOME. 2 TIMES A MONTH, ON ALTERNATING WEEKS W/AD, I TEACH A DIGI SCRAP CLASS.
FRI.– CARA'S HERE, FROM 9:15-3:15.
AFTERNOONS TEND 2 BE "FREE." IN MY "FREE TIME," I DO:
• CONVERSE W/ANY1, LIKE A PEN-PAL/LETTER, THROUGH EMAIL OR IM
• PRACTICE THERAPY
• DIGITAL SCRAPBOOKING
• AUDIO BOOKS ON A CD PLAYER W/REMOTE
• PLAY PIANO -ALL U NEED IS A RT. HAND! I USE A SYNTHESIZER BECAUSE MY WHEELCHAIR'S 2 TALL 4 A PIANO.
• JOURNAL THROUGH TYPE
• TYPE A BOOK
• SELL/BUY ON EBAY—I RARELY DO THIS
• COMPUTER GAMES-I LIKE SOLITAIRE, SPIDER FREECELL, YAHOO'S SUPER TEXT TWIST, HEARTS, & SODUKO ( http://www.websudoku.com/?level=1 ) —I RARELY DO THIS
• TV SHOW
• READ/TYPE ON WEBSITES/BLOGS
• GAMES W/FAMILY &/OR FRIENDS–I DO SIGNO (ASL ALPHA & #’S BINGO, WHICH I MADE 4 MY CALLING–IT HELPS U LEARN/REVIEW ASL A FUN WAY), CARD GAMES–SOME USE A CARD HOLDER, OR I JUST SET THE CARDS IN MY LAP, RT.-SIDE UP (LIKE REG. CARDS, SKIP-BO, PHASE 10, UNO, SKIP-BO), PHASE 10 DICE, MANCALA (2-4 PLAYERS), RUMMIKUB (4 PLAYERS), APPLES 2 APPLES, DISNEY SCENE IT!, IMAGINIFF, MOUNTAIN CLIMBER (2 OR 4 PLAYERS), TRAVEL BLOKUS (2 PLAYERS), & A FEW OTHERS OCCASIONALLY, LIKE CONNECT 4 (2 PLAYERS) & TWISTER (I DO THE SPINNER, OBVIOUSLY).
• PAINT-I'VE WATERCOLORED
• MOVIE W/FRIENDS
• SHOP ONLINE
• MY CALLING 4 CHURCH IS HUGE –PLANNING-COMPLETE W/MAKING LESSON PLANS (I STILL CAN THINK! LOL), USE MY DIGITAL SCRAPBOOKING 2 MAKE STUFF 4 THE ACTIVITY (LIKE CHORE COUPONS), PROVIDE STUFF 4 A SONG (B4 MY STROKE, I WAS A CHURCH PRI. CHORISTER, & HAD A DEGREE IN EL. ED. & MUSIC), EMAIL COMMUNICATIONS.
P.S. 2DAY I UNWRAPPED A CD-ROM, SO I COULD USE THE CD–USING THE LITTLE FINGERNAIL I HAVE 2 POKE A HOLE. BUT THE PLASTIC & THE CD CASE HAS 2 BE "JUST RT." I TRIED AGAIN, & COULDN'T DO IT—

SUN. & TUES.

I'M SURE THIS SEEMS LIKE A SMALL ACCOMPLISHMENT 2 ANY1 ELSE, BUT IT WAS HUGE 2 ME! SUN., I GOT A PENCIL OFF A BENCH SUN.—I'VE BEEN DYING 2 SHARE! LET ME EXPLAIN: AT CHURCH, WE SIT IN THE LAST PEW, SO THERE'S THE CHAPEL'S WALKWAY BEHIND US & THUS THERE'S ROOM 4 ME 2 MOVE BEHIND THE PEW. AFTER SACRAMENT, MARK WAS HEADED 2 CLASS IN ANOTHER RM. (THIS WAS AFTER 1 HR. OF 3 HRS. OF CHURCH—WE MEET 12:30-3:30 PM), SO THE KIDS PILED STUFF ON MY LAP, BUT 4GOT A PENCIL ON R PEW, TOWARDS THE BACK OF THE PEW. AS THERE WAS LESS PEOPLE AFTER A WHILE, & NO1 HAD SEEN THE PENCIL, AS R NEXT CLASS STARTED IN THE CHAPEL, I SIDELED ALONG-SIDE THE PEW, AS CLOSE AS I COULD GET, LIFTED MY RT. ARM OVER THE PEW, & LEANED RT. AS MUCH AS I COULD. I DID THIS A FEW TIMES, AS I INCHED MY CHAIR FORWARD TEENY BITS 2 REACH. I FINALLY GOT IT, & ADDED IT 2 THE HUGE PILE THAT WAS STILL THERE! (WHICH AMUSED ME BECAUSE, REALLY, MANY PEOPLE SAW OR SAID HI 2 ME ME, BUT NO1 OFFERED 2 HELP ME—DID THEY EXPECT ME 2 REACH THE BAG BEHIND ME & PUT IT AWAY?) I FINALLY COULD STATE THE OBVIOUS (HELP ME!) WHEN A FRIEND SAT BY ME AT AROUND 2:30.

HOWEVER, THIS DIDN'T BOTHER ME. I ACCOMPLISH THINGS BY BEING INDEPENDENT. I MAY BE PAINFULLY SLOW THE 1ST TIME, BUT THAT'S PART OF LEARNING. BEING ALONE, OR IN THIS INSTANCE, IN THE BACK OF THE ROOM, PEOPLE DON'T HAVE THE INSTINCT 2 HELP ME & I DON'T GIVE UP AS EASILY & WANT HELP. HAVE U SEEN THIS POST? IT SHOWS THE SAME NEED 4 INDEPENDENCE:

NOW 2 BRAG-I WAS PROUD, BUT HAVEN'T SHARED! YESTERDAY, I WORE A SWEATER. WHEN I SIGNED, IT TENDED 2 COVER MY HAND (LIKE COVERING YOUR MOUTH), SO IT WAS ROLLED BACK. LAST NIGHT, R FAM. SAW A MOVIE. I WAS FREEZING COLD IN THE THEATER-MY SWEATER HELPED IMMINSCILY-BUT I KEPT IT ROLLED UP 2 EAT POPCORN. BUT WHEN I WAS DONE EATING, 4 WARMTH, I WANTED MY HAND IN MY SLEEVE; BUT HOW COULD I QUIETLY GET MARK'S ATTENTION & SIGN IN THE DARK 2 UNROLL MY SLEEVE? I DECIDED I COULDN'T, SO USING MY ARMREST & MY JOYSTICK ON MY CHAIR (WHICH I OFTEN USE 2 TURN THE 2 RINGS ON MY RT. HAND), I DID IT! I WAS IN DISBELIEF!
I AM INCAPABLE OF MANY THINGS. U'D BE SURPRISED WHAT I CAN DO, & AS MY KIDS GROW UP, I CAN DO MORE. IT CAN BE A NICE BREAK WHEN MY CAREGIVER WAITS ON ME HAND & FOOT. HOWEVER, MARK HAS A LIFE–& SO I CAN BE ALONE. THAT CAUSEES ME 2 CHALLLENGE MYSELF & BE CREATIVE. 4 EX., MARK WAS HERE, BUT THOUGH I COULD QUICKLY GET MARK'S ATTENTION & HAVE AN EASIER TIME, I DECIDED 2 TAKE ADVANTAGE OF BEING ALONE: I WAS TIRED OF WAITING 2 C SOME CDS ON MY COMP., SO I LEARNED 2 DO IT MYSELF! ANOTHER TIME, I LEARNED 2 USE MY KEYBOARD AS A WEIGHT, 2 GET KLEENEX OUT 2 WIPE MY NOSE. IT'S TONS FASTER 2 CLOSE A CD DRAWER ON MY COMP., SWITCH A LT. SWITCH, OR OPEN MY ELEVATOR DOOR IF SOME1 ELSE DOES IT-SOMETIMES MARK DOES. BUT I LIKE 2 TRY
SOMETIMES -THESE R THINGS I CAN DO & OTHER THINGS I ONLY LEARN I CAN DO BY CHALLENGING MYSELF.

SOMETIMES THIS IS A HEALTHY DESIRE—WHEN NOTHING ELSE IS AFFECTED (LIKE LEANING OVER 2 PICK UP SOMETHING OR FIX MY CLOTHING, OR RAISING MY CHAIR 2 C IF I CAN C SOMETHING B4 I ASK 4 HELP), BUT SOMETIMES I NEED 2 SWALLOW MY PRIDE & ASK 4 HELP, SO I DON'T BREAK SOMETHING. IT'S A FINE LINE, & I'LL BET MY INDEPENDENCE CAN DRIVE MARK BONKERS SOME DAYS!

ON TUES., I HEARD A BILL WAS BEING DISCUSSED 2 LET LATE PREGNANCY & EARLY RECOVERY WOMEN USE DISABLED PARKING. I HAVE BEEN PREGNANT. I'M NOW DISABLED, AND THOUGH IT'S NOT PASSED, I WAS FURIOUS IT WAS EVEN BEING DISCUSSED! REMEMBER WHEN I WENT 2 A SCHOOL RECITAL & SOME1 PARKED ILLEGALLY IN THE LAST HANDICAPPED PARKING, SO WE HAD 2 GO HOME? THIS MAY SOUND HARSH, BUT I'M SORRY:

        IF U CAN WALK, NO MATTER HOW HARD IT IS, UNLESS U R IN PAIN &/OR USING A WALKER,WALK!

IT IS NOT FAIR 2 THOSE OF US WHO NEED THOSE SPACES. THERE R NOT THAT MANY & 2 SHARE THEM?!? IT DOESN'T WORK 2 SAY "IF ONLY 1 SPOT IS LEFT, DON'T USE IT"—WHAT IF 2 DISABLED PEOPLE SUDDENLY APPEAR? SHOULD 1 GO HOME BECAUSE A WALKING PREGNANT WOMAN TOOK THE SPOT SHE WAS ENTITLED 2? SOMETIMES, EVEN CLOSER SPOTS ARE CLOSER THAN HANDICAPPED PARKING!

BACK IN INDY, THERE WAS A MARSH GROCERY STORE THAT SECTIONED HANDICAPPED PARKING AT THE FRONT, BY 1 ENTRANCE. BY THE OTHER ENTRANCE, IN PINK & BLUE, PARKING WAS SECTIONED OFF 4 "PREGNANT & NEW MOTHERS." THERE WAS NO FINE 4 PARKING THERE, YET IT USUALLY WAS RESPECTED. THAT'S WHAT SHOULD BE DONE. I ADMIT, I NEVER HAD A C-SECTION, SO I MAY NOT BE FULLY AWARE OF EVERY CIRCUMSTANCE, BUT THOUGH I THOUGHT THE NEW MOM SPACES ROCKED, I ONLY USED THEM ONCE BECAUSE IT WAS HARD WITH 3 SMALL KIDS! BUT I CAN C A MOM WITH 1 NEW BABY USING HANDICAPPED PARKING, NOT BECAUSE SHE NEEDS 2, BUT BECAUSE SHE'S ENTITLED 2 IT! & THEY WON'T CARE IF THEY PARK A LITTLE ON THE HASH MARKS—THEY DON'T USE THEM, & R UNAWARE OF THE COMMON COMPLAINT THAT THEY R ALREADY 2 THIN—

MY KIDS

I CAME DOWNSTAIRS 2DAY 2 THE MOST JOYFUL VOICE REPEATEDLY SINGING, "I'M 5 YRS. OLD 2DAY!" I SIGNED "HAPPY BIRTHDAY," & THOUGH FIA DIDN'T KNOW THE SIGN, SHE IMMEDIATELY GUESSED IT. SEEMED OBVIOUS ENOUGH I'D SAY "HAPPY BIRTHDAY!"

I THINK I HAVE BRAGGING RIGHTS AS A MOM & AN EDUCATOR: TWICE THIS MONTH, I HAVE REALIZED MY KIDS R AMAZINGLY SMART . ZACH IS SO FAST AT UNDERSTANDING MY ASL—NOT AN EASY TASK & I CAN ONLY HOPE IT COMES IN HANDY SOMEDAY, LIKE ON A MISSION 4 R CHURCH. JESS IS AN AMAZING READER–ALTHOUGH SHE THRIVES ON CONTEXT CLUES, SHE OFTEN FIGURES OUT A WORD I’M NOT DONE TYPING & DOES SUBERB HAVING ME, OFF ALL PEOPLE, HELP HER SOUND OUT A WORD. FIA IS STARTING 2 READ & AT 4, & GRASPS MATH CONCEPTS A KINDERGARTENER STRUGGLES WITH.

SINCE THE KIDS LEARN FROM MARK & I, & MARK TEACHES SPANISH 2 JESS’ 1ST GRADE CLASS, THE KIDS HAVE BECOME MULTI-LINGUAL: ENGLISH, SPANISH, & ASL–WHERE THEY UNDERSTAND MORE FINGERSPELLING (I OFTEN SPELL WORDS 4 THE GIRLS 2 WRITE, BECAUSE THEY CAN USUALLY IDENTIFY MY LETTERS) & IF IT’S DONE SIGNED 2 THEM (RATHER THAN THEY DO IT).

1 QUES: ONCE, AS JESS WAS FIGURING OUT A NEW WORD, & I AGREED IF IT WAS A SOFT OR HARD VOWEL, I COULD C THE IMPORTANCE OF MY EDUCATION (AT TIMES LIKE THESE, I'M SO GRATEFUL 4 MY EDUCATION & STUDENT TEACHING 1ST GRADE, SO I CAN NOD YES OR NO 2 HER QUES. ABOUT HOW A VOWEL SOUNDS), BUT USUALLY I WONDER, WHAT GOOD WAS IT 2 LEARN 2 TEACH YOUNG KIDS, AS FAR AS MY FAM. IS CONCERNED, IF I CAN'T TRULY TEACH? (REMEMBER, THIS WAS A RARE INSTANCE, & ONLY HAPPENED ONCE—& I UNDERSTAND HOW MUCH IT MEANS 2 SET AN TEACHER THROUGH EX., BUT I DIDN'T NEED A TEACHING DEGREE 2 DO THAT!) ZACH, MY OLDEST, WAS JUST STARTING 2 READ WHEN I STROKED. NOW I’M MISSING TEACHING THE GIRLS 2. IT’S BITTERSWEET–THEY’RE CLOSER 2 BEING ABLE 2 SPELL & FINALLY UNDERSTAND ME AFTER ALMOST 3 YRS., BUT I WISH I WAS TEACHING THEM 2 READ!

ON A FUNNY NOTE, WE WERE PLAYING THE APPLES 2 APPLES GAME: SOME1 GETS A DESCRIPTIVE WORD ON A GREEN CARD. ALL OTHER PLAYERS TRY 2 WIN THE GREEN CARD BY CHOOSING A WORD THEY THINK THAT PERSON WILL CHOOSE AS THE BEST MATCH FROM THE WORDS ON THE RED CARDS. I HAD A GREEN CARD THAT SAID “USELESS.” MY FAV. RED CARD CAME FROM 6 YR. OLD JESS–“MY BODY!”

P.S. MARK JUST BROUGHT ME “DIGITAL SCRAPBOOKING” MAG. FROM SIMPLE SCRAPBOOKS. MY SCRAP. PG. IS FINALLY PUBLISHED, & IT MENTIONS THIS SITE! ONLY THING IS THE ADDRESS CHANGE 2 WWW.JENANNLYNN.ORG, BUT THANKFULLY THE OLD ADDRESS DIRECTS HERE!

THE POCKET OF MY WHEELCHAIR

FORGIVE ME 4 NOT POSTING LAST WEEK! I TRIED &, OBVIOUSLY, FAILED! MY SISTER, MISSY, & HER HUSBAND, DUSTIN–WHO HELPS RUN THIS WEBSITE, CAME 2 VISIT. MISSY WITNESSED 2 THINGS FEW DO:
1. A PHONE CALL I HAD W/MARK—YES, THERE'S A SYSTEM, BUT I ONLY ANSWER IF I HEAR HIS RING—IT'S DIFFERENT.
2. ME WALKING –APPARENTLY, READING ABOUT ME WALKING IN POOL THERAPY IS DIFFERENT THAN ACTUALLY SEEING IT!

I HAVE DECIDED 2 SHARE WHAT'S IN THE POCKET OF MY WHEELCHAIR, BECAUSE I THINK U WILL FIND IT ENLIGHTENING. MARK STARTED SHARING IT W/ME A WHILE AGO, & IT WAS VERY ENTERTAINING. IT SHARES A PERSPECTIVE ABOUT MY LIFE I OTHERWIS WOULDN'T SHARE—MOST WOMEN DON'T SHARE THE CONTENTS OF THEIR PURSES! HE USES WORDS BETTER THAN I—I AM BORING IN COMPARISON—BUT HE MISSED STUFF OR EXPLAINED IT WRONG. SO HERE'S MY BORING POINT OF VIEW:

I HAVE 2 POCKETS, 2 THE LEFT & RT. OF MY SEAT CUSHION, ABOUT 8 IN. LONG, 3 IN. DEEP. I CAN'T ACCESS THE LEFT 1WELL, BECAUSE MY ARM DOESN'T MOVE, SO THINGS MARK USES 4 ME R THERE: SUNGLASSES IN THE SUMMER (I'M LIGHT SENSATIVE), BOBBY PINS (4 A RARE OCCASION I GO OUTSIDE & IT'S WINDY), ALL-PURPOSE BLACK PONYTAIL ELASTIC. LATELY, FIA BEGAN PUTTING SMALL TOYS "4 ME" IN IT, BUT MARK STOPPED HER WHEN IT WAS BAD! (SHE LEFT THE TOYS IN INDEFINATELY & JUST ADDED 2 THEM—I CARRIED A MINNIE MOUSE MINI-STATUE AROUND 4 WEEKS!)

THE RT. POCKET IS MUCH MORE FRUITFULL. THIS POCKET CONTAINS WHAT I USE FREQUENTLY &/OR DAILY:
1. CANKER SORE MED.—IN THE BACK OF MY CHAIR, IN A PURPLEBAG, IS 1 THAT LASTS LONGER, TASTES BETTER, HAS AN APPLICATOR SO I ALWAYS GET REASONABLE AMOUNTS WHERE EVER I AM, & & NUMBS ME BETTER. THIS 1 IS 4 EMERGENCIES—I ALMOST ALWAYS HAVE A MOUTH SORE OF SOME KIND—IT SEEMS AS SOON AS 1 CLEARS UP, I BITE MYSELF OR FORM A NEW CANKER—BUT I RARELY MEDICATE THEM UNLESS IT'S SUPER BAD (IT SEEMS 2 FEAL IT FASTER), OR A PRE-CAUTION 4 EATING.
2. KLEENEX—I CRY A LOT, DUE 2 MY PBA, & SLOBBER/SPIT, BUT IT' USUALLY 4 A BIG CRY.
3. FLAT LASER POINTER—I USE IT 2 POINT. THE KIDS GET IT 4 ME 2 POINT AT WHAT THEY SHOULD CLEAN UP. IT'S FLAAT SO IT'S EAASY 2 HOLD. I AM BUMMED BECAUSE SUN. I WAS DIRECTING THE KIDS 2 CLEAN, TRIED 2 USE IT, & THE BATATERY MUST BE DEAD & I DON'T KNOW IT CAN BE REPLACED—
4. METRONOME—I'M IN MUSIC THERAPY. DID U KNOW I PLAY PIANO 1-HANDED & PLAY LIKE 7 SONGS FROM MEMORY (MANY ARE CHURCH PRI. SONGS), & FIGURE OUT OTHERS BY SINGING THE SONG IN MY HEAD?
5. COUPONS FROM ZACH FROM A MOTHHER'S DAY CARD LAST YEAR!