Recovery

DISNEYLAND

GOT BACK FROM MY TRIP SAT.– WE WERE AT DISNEYLAND. SORRY 4 THE DELAY– I GOT SICK ON R TRIP, & HAVE BEEN RE-COOPERATING.

WED., WE PICKED UP THE GIRLS FROM SCHOOL, & HEADED 2 MY MOM’S. THEY WERE EXCITED THEY WERE SLEEPING THERE, BUT FIA WAS TOLD SHE’D STAY W/MOM & DAD. SHE THOUGHT THAT WAS AWESOME, 2 HAVE MOM & DAD 2 HERSELF, BUT HAD NO IDEA HOW AWESOME IT WAS! FIA’S B-DAY WAS THE FOLLOWING DAY, SO JESS GUESSED FIA WAS GOING 2 A SPECIAL DINNER. A SPECIAL DINNER, INDEED!

EACH KID IS GETTING A SPECIAL TRIP THIS YEAR—JESS ALREADY WENT ON HERS, & ZACH KNOWS HIS IS COMING UP, BUT FIA KNEW NOTHING OF HERS, EXCEPT THAT I WAS GOING 2…

WE HAVEN’T FLOWN IN YEARS (IT JUST ISN’T CONDUSIVE 2 ME), SO HER 1ST SURPRISE WAS THE AIRPORT! THE PREVIOUS FLIGHT (NEW YORK) WAS LISTED STILL—IT’S WHERE MY SISTER LIVES, & JESS JUST WENT THERE, SO IT WAS LOGICAL 2 THINK WE WERE GOING THERE, BUT WE FILLED HER IN THAT WE WERE FLYING 2 CALIFORNIA, & DRIVING 2 R HOTEL. WE GOT ALL THE WAY 2 THE HOTEL, B4 SHE FIGURED OUT WHERE WE WERE (SHE SAW A SIGN POINTING THE WAY 2 DISNEYLAND)!

AT DISNEYLAND, I DIDN’T GET AS MUCH PRACTICE TIME, AS I’D HAVE LIKED IN my new MANUAL W/C. B4 I LEFT, THE KIDS USED IT, & HAD A BLAST IN IT. I ENJOYED HAVING THEM C HOW OFTEN THEY LEFT STUFF ON THE FLOOR, IN THE WAY (NOW, IF ONLY THEY COULDN’T TALK, & DEMAND SOME1 2 MOVE IT)! THEY ENJOYED ROLLING AROUND, WATCHING TV, DEMANDING 2 BE FED, & LAUGHING OR MAKING NOISES LIKE I DO, & “BEING MOM.”

IF I WAS ALONE AT THE DISNEYLAND PARK, THE W/C BREAK WAS USED, & I DIDN’T ARGUE, BECAUSE IT WAS 4 MY OWN SAFETY–I’M RT. HANDED, & CAN’T TURN YET, OR BACK OUT OF ANY1’S WAY, OR DO MUCH, IF I ROLL INTO A CROWD!

I’M USUALLY IN A POWER CHAIR, & LOVE IT. IF IT BREAKS, I HATE 2 GO BACK 2 MY MANUAL, BUT WE HAD 1 W/ALL SMALL WHEELS FOR THE 1ST 9 MO., AFTER MY STROKE, SO IF MY POWER W/C BROKE, I HAD NO CHOICE BUT 2 RETURN 2 MY MANUAL W/C W/SMALL WHEELS, & BE AT THE COMPLETE MERCY OF OTHERS!

MY NEW MANUAL THAT WE TOOK, W/BIG WHEELS I CAN MANUEVER, I CRIED TEARS OF JOY WHEN I GOT IT, AT THE MERE THOUGHT OF THE CAPABILITY 2 MOVE ON TRIPS, EVEN THOUGH I WASN’T SURE I COULD EVEN MOVE IT! (& I CAN BARELY DO IT–I MOSTLY GO IN A HUGE FWD LEFT-HAND TURN… ODDLY, I PUSH A LOT BETTER ON THE ACTUAL WHEEL, THAN ON THE RAIL, UNTIL I’M STRONGER, & I HAVE 2 MOVE FAST, OR I JUST ROLL BACK FROM WHERE I CAME!)

AS MANY STROKE SURVIVORS KNNOW, HELP IS HARD TO ACCEPT AFTER GAINING SOME INDEPENDENCE WITH A POWER CHAIR. I’VE DECIDED IT’S ANOTHER ONE OF THOSE STAGES IN RECOVERY WE MUST FACE.

I FINGERSPELL, & IT’S TIRING 2 SIGN ALL THAT I DO, SO I WAS BEYOND EXHASTED WHEN WE RETURNED HOME! IT’S ALARMING HOW INCREDIBLY INDEPENDENT I’VE BECOME, BECAUSE OF THE HOME ACCESSIBILITY, & MY POWER W/C!

I DETEST MY MANUAL CHAIR THAT HAS SMALL WHEELS, WHERE I GO BACK 2 BEING COMPLETELY HELPLESS & DEPENDANT. IT HAD IT’S TIME, BUT I HAVE SO OUTGROWN IT! I REMEMBER LOOKING AT MY OLD MANUAL CHAIR, WATCHING MY HUSBAND, MARK, REMOVE PARTS I’D OUTGROWN, & I VOWED 2 GET RID OF MORE! LAST SUMMER, IN A HOTEL ROOM, I SAW HOW VITAL IT IS 4 ME 2 MOVE (ESP. SINCE I CAN’T SPEAK), BUT MANY TRAVELS—ESP. WHERE FLYING IS CONCERNNED–POWER CHAIRS R NOT AN OPTION, SO I’M ANXIOUS 2 MAKE THIS WORK! I FIGURE I CAN ONLY DO SO MUCH, BUT I CAN AT LEAST TRY!

ANOTHER COOL WEBSITE

I AM SO EXCITED! http://www.readthescriptures.com/ IS SUCH AN AWESOME THING! EXCEPT WHEN I TRAVEL, I CHECK EMAIL DAILY. I HAVE BEEN TRYING 2 READ THE SCRIPTURES DAILY & THE RS & SS LESSON WEEKLY, VIA AUDIO AT LDS.ORG, BUT I’VE DONE HORRIBLE–EXCEPT W/THE RS LESSON, BECAUSE IT’S EMAILED 2 ME!

THIS LET’S ME READ ALL THOSE THINGS VIA AUDIO THROUGH EMAIL REMINDERS, OR ONLINE (WHERE THERE’S AUDIO, AS WELL AS ENLARGED TEXT, AS WELL AS THE CAPABILITY 2 WRITE NOTES, & HIGHLIGHT TEXT)! I CAN PICK WHERE 2 START, WHEN 2 STOP, ETC. THEY SEEM 2 HAVE COVERED EVERYTHING!

THE 1ST DAY THAT I WAS CONCIOUS IN THE CLEVELAND HOSPITAL, I WONDERED HOW I COULD READ THE SCRIPTURES AGAIN. IT HAS BEEN A CONCERN 4 ALMOST 5 YRS., AS I’VE BEEN TOLD I SHOULD READ THEM DAILY. SO IMAGINE MY EXCITEMENT IN FINDING THIS WEBSITE!! I WANT 2 TELL EVERY1 ABOUT THIS GREAT RESOURCE!

KNOW WHAT ELSE? I ONLY LEARNED ABOUT IT BECAUSE OF THE PROGRAM (READ PLEASE) THAT I MENTIONED IN THE LAST ENTRY ON MY BLOG! NORMALLY, I’D HAVE SKIPPED THE ARTICLE, OR WAITED MONTHS 4 IT 2 BE READ 2 ME!

FINALLY ME!

IT’S A GOOD SIGN THAT I HAVEN’T POSTED…HAVE A LOT WAITING, BUT IT’S DIFFICULT 2 FIND THE TIME—I HAVEN’T MASTERED THE NEW BALANCE (I’M SLOWER & NEED MORE TYPING TIME, BUT ENJOY FAMILY TIME MORE–ESP. SINCE I CAN TALK 2 EVERY1, NOW).

I USUALLY TAKE PARTS OF THINGS I’VE WRITTEN (IN EMAILS, MY JOURNAL, MY COMMENTS 4 CHURCH, ETC.) 2 HELP TYPE A POST (HELPS MANAGE TIME), BUT DOESN’T HELP IF MY EMAIL IS 2 PERSONAL, OR DISCIPLING A KID, & I’M NOT FINDING TIME 2 TYPE MY JOURNAL, ETC.

SO, HERE’S FOOD 4 THOUGHT. These quotes will give you energy to try a little harder or just keep at it, to help you remember why you’re here and who you want to become:

You are the only person on earth who can use your abilities.
-Zig Ziglar

Life is thickly sown with thorns, and I know no other remedy than to pass quickly through them. The longer we dwell on our misfortunes, the greater is their power to harm us.

-Voltaire
Courage does not always roar. Sometimes, it is the quiet voice at the
end of the day saying, “I will try again tomorrow”.
— Mary Anne Radmacher

“even if you feel that your dreams and goals have washed out in the past, build them up again. Each new day is a fresh start, a clean slate, a new chance to change, improve, and try again. In the very process lie opportunities immeasurable for growth and good fortune. “
“Music and the Spoken Word,” from “Beginning Again”

“We can be blessed with wisdom when we understand, in very personal ways, that on the other side of suffering is a depth of feeling, a perspective on life and love that we might not otherwise have known. :
“Music and the Spoken Word,” from “Unexpected Blessings”

“Every great endeavor starts small, sometimes as little more than a dream… But even small beginnings, after all of the roadblocks and the dead ends, can lead to great things when they ride on the wheels of a dream.”
“Music and the Spoken Word,” from “Big Dreams on a Small Island”: (http://www.musicandthespokenword.com/messages/):

I gain strength, courage and confidence by every experience in which I must stop and look fear in the face…I say to myself, I’ve lived through this and can take the next thing that comes along.

-Eleanor Roosevelt

THE RESULTS…

THX 4 THE PRAYERS—IT REALLY HELPED, & HELPED ME BATTLE PBA! IT WAS MY UNSEEN ARMY!

I MANAGED NOT 2 CRY–ACTUALLY, IT’S HOW U C IT: THERE WAS “SILENT CRYING.” BUT THERE WAS NO HOWLING, OR STRAIGHTENING MY LEFT LEG, OR ANYTHING.

THIS WAS A BIG DEAL—NOT JUST BECAUSE I COULD DO SOMETHING I LOVED & NEVER SAW AS POSSIBLE….& NOT BECAUSE THE ACTUAL PART MEANT SO VERY MUCH, BUT BECAUSE I DID WHAT I HAVE TRIED 2 DO FOR ALMOST 5 YRS.—WHICH WAS 2 NOT HAVE ACTUAL OUT LOUD TEARS, DRAWING ATTENTION 2 MYSELF. SO, 2 ME, IT WAS A SUCCESS!

REMEMBER THE LIST I STARTED LAST DEC., “BLESSINGS FROM A STROKE”? THOUGHT OF 3 MORE:
1. I CAN DISCIPLINE MY KIDS ANYWHERE—EVEN ON STAGE!
2. IF A ZIPPER BREAKS IN BACK, WHO CARES? NO1 CAN TELL! & STAPLES WORK WONDERS!
3. I CAN GIVE THE VISUAL REPRESENTATION OF THE WORDS, LIKE I SAID WAS NEAT IN MY ENSIGN ARTICLE (WHEN SONGS WERE SIGNED). (LIKE THE SIGN 4 “GOD”—A PALM STRETCHED HEAVENWARD, & EYES LOOK UP—IS JUST A NEAT VISUAL REPRESENTATION).

I’VE SLOWLY BEEN ADDING 2 IT, & AM APROACHING #50! I AM SHOCKED THERE’S THAT MANY, ESP. KNOWING THAT I’VE 4GOT SOME!

IN THE PLAY, THERE WAS 2 ANGEL LINES. THE 1ST LINE, I PLANNED 2 START SIGNING, BUT SINCE IT WAS 2 LONG, I’D “PASS THE TORCH” 2 JESS, SO SHE COULD READ THE REST. WHEN JESSIE READ, IT WAS THE HARDEST. I SILENTLY CRIED AT THE END…SHE WAS SO NERVOUS, & I WAS SO PROUD OF HER!

LAST X-MAS I MENTIONED HOW I RELATE 2 THIS SONG—NOT AS IF I WAS A HEAVENLY ANGEL, BUT THE HERE & NOW: “HANDEL’S DREAM” FROM THE UNFORGOTTEN CAROLS, BY MICHAEL McLEAN.

THE STORY IS ESSENTIALLY ABOUT AN ANGEL, WHO CAN’T SING (NEITHER CAN I, NOW, THOUGH I HEAR SONGS IN MY HEAD/HEART), BUT AUDITIONS ANYWAY, 2 ANNOUCE CHRIST’S BIRTH. I LOVE HIS STATEMENT THAT “IF U COULD HEAR WHAT’S IN MY HEART, U’D LET ME SING!”

HE’S LATER INFORMED THAT HE HAS A “DIFFERENT” VOICE (I BELIEVE I DO 2), & THAT SOMEDAY, HE WILL BE GIVEN A VOICE, & HEARD (I STRONGLY BELIEVE THAT I WILL 2).

THAT NIGHT I WAS GIVEN A VOICE, & HEARD!

BUT, I WANTED THE FOCUS ON CHRIST, NOT ON ME. I’D REALLY PRAYED NOT 2 CRY, DESPITE MY EXTREME EMOTION— I REFUSED 2 LET MYSELF THINK OF “HANDEL’S DREAM,” BUT I TOTALLY FELT IT!

THANK U 4 YOUR HELP!

TALKING

THOUGHT U MIGHT GET A KICK FROM THIS:

LATELY, MY KIDS HAVE SHOWN SIGNS OF “WEAR” W/MY SIGNING. IT GETS OLD 4 ME 2 (AT LEAST THEY HAVE BREAKS AS THEY TALK 2 EACH OTHER, BUT I NEVER HAVE A BREAK FROM FINGERSPELLING OR TYPING THINGS W/1 FINGER–NO MATTER HOW I SPEAK, IT’S LETTER BY LETTER, IN ORDER 2 FORM A WORD. BECAUSE OF IT, OFTEN, I WEIGH IF IT’S EVEN WORTH THE EFFORT 2 SAY ANYTHING). BUT, I DON’T BLAME ANY1. IN FACT, I APPLAUD THEM: IT’S TAKEN ABOUT 5 YRS., TO GET 2 A POINT WHERE THEY C MY HAND, & SAY “NEVER MIND” OR “4GET IT,” & IT’S EXHAUSTING.

ANYWAY, JESS CRACKED ME UP 2 MON. AGO. EVERY DAY, AS PART OF THE GIRLS HOMEWORK, THEY READ 2 ME. 4 SOME ODD REASON (POSSIBLY “APRAZIA”), SOMETIMES I CAN’T VOCALIZE UNTIL SOME1 SINGS “OLD MCDONALD” & I EFFORTLESSLY SING “EIEIO”… SO 2 MON. AGO, JESS CHOSE A BOOK TITLED “OLD MCDONALD,” & PAUSED 2 HEAR ME REPEAT EVERY “EIEIO”…

I BELIEVE SHE DID THIS BECAUSE, THOUGH I TALK LIKE A BABY (WHERE THE IMMEDIATE FAMILY UNDERSTANDS THE BABY MORE), THERE IS A JOY THAT ARISES FROM ME ANSWERING A QUESTION, W/O THEM NEEDING 2 LOOK AT ME. OR ME CALLING SOME1’S BLUFF–FIA SAYS THAT ONE OF THE THINGS THAT I SAY BEST IS “I LOVE YOU” (IT SOUNDS MORE LIKE “I O U”), & MY NEXT BEST WORD THAT I VOCALIZE IS “LIAR!” 🙂

THE GIRLS SAY STUFF LIKE, “MOM’S FUN, I JUST WISH SHE COULD TALK,” ALL THE TIME JESS AMAZES ME W/ A GIFT, 2 READ MY ASL FAST, & PICK UP ON NEW ASL WORDS. FIA AMAZES ME THAT SHE CAN EVEN READ MY ASL, AT HER AGE! NOT ONLY IS THERE READING, BUT SPELLING! (ZACH IS AMAZING 2, BECAUSE I ALMOST ALWAYS CAN TALK 2 HIM, EVEN IF HE’S “WORN OUT.”) BUT EVEN SO, THE 1 THING I’VE ALWAYS WANTED BACK IS 2 TALK. I’M HAUNTED BY BEING TOLD I CAN’T TALK, BUT I BELIEVE I CAN.

WHAT TALKING I DO, IS NOT A “HIDDEN TALENT,” OR “SECRET.” IT JUST DOESN’T COME UP IN CONVERSATION, OR I DO IT, & AM NOT NOTICED (AS I’M “THE GIRL WHO CAN’T TALK”), OR I HAVE A DELAYED REACTION (I’VE KNOWN MY MOM & MUSIC THERAPIST 2 STAND IN AN OPEN DOORWAY, & WAIT LIKE 5 MIN. 4 ME 2 SAY BYE!), OR IT’S UNRECOGNIZABLE (IT HAS TAKEN FIA 2 YEARS 2 RECOGNIZE THAT I SAY HER NAME), OR I WAS SIMPLY WAS 2 QUIET.

IT’S OFTEN INVOLUNTARY & I CAN HAVE A “GOOD SPEAKING DAY,” OR A “BAD SPEAKING DAY.” I DON’T KNOW IF IT’S A GOOD OR BAD DAY UNTIL I TRY, BUT IT DOESN’T MEAN NO TALKING ON A BAD DAY. A BAD DAY IS JUST HARDER, QUIETER, LESS CLEAR, PEOPLE R MOVING 2 FAST 4 ME 2 TRY, OR I TRY & CAN SAY LESS (OFTEN, I SIT W/MY MOUTH OPEN & TRY 2 PUSH OUT ANY SOUND AT ALL, & GET NO SOUND OUT). THOSE R THE DAYS I FOCUS ON BREATHING BIGGER & DEEPER.