Recovery

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BIG ACCOMPLISHMENT:

IN SPEECH THERAPY, I’M DOING A RATHER INTENSE PROGRAM 2 BUILD UP MY BREATH SUPPORT. I PRACTICE SPEECH EXERCISES 4 DAYS A WEEK, & TWICE A DAY FOR 4 WEEKS. IN THE EXERCISES, I SAY “AAAH”, DO VOCAL SLIDES, SAY SOME “FUNCTIONAL PHRASES”, SAY WORDS, & MAKE A GOAL (LIKE I DECIDE 2 SAY HI BACK 2 ANY1 WHO SAYS IT 2 ME).. I KEEP EVERYTHING ORGANIZED 4 PRACTICE IN A “SPEECH BINDER.”

HOWEVER, I SEEM 2 SUFFER FROM SOME “STAGE FRIGHT”, SO IT’S EXTRA HARD 2 SAY THINGS I KNOW I CAN SAY WHEN I’M OUT & ABOUT. BUT AT HOME, I HAVE “TALKING” DAYS. I STICK MOSTLY TO SINGLE WORDS (LIKE YES, NO, HI, BYE, OR MY FAVORITE: WHATEVER!). OCCASIONALLY I DO SHORT PHRASES (3-5 WORDS), BUT IT’S SO FUN 2 TRY LONGER, TOO! I’M NOT CLEAR, BUT IF MY FAMILY UNDERSTANDS, I’M TICKLED WHEN THEY DO UNDERSTAND & RESPOND. (I’M EASY 2 AMUSE! LOL)

MY PHILOSOPHY IS 2 SAY ANYTHING I’D SIGN (W/IN REASON!). I MAY LUCK OUT, BE UNDERSTOOD, & NOT NEED 2 SIGN! THOUGH MY FAVORITE IS WHEN I THROW OUT SOMETHING I THINK, BUT NEVER SIGN, AM UNDERSTOOD, & ANSWERED (LIKE IF I OVER HEAR SOMETHING, & DON’T UNDERSTAND, I MAY THINK , “WHAT?”, BUT IT’S 2 CONFUSING 2 ASK, & I DON’T REALLY NEED 2 KNOW, SO I LEAVE THE QUESTION IN MY HEAD. OR I DON’T BOTHER SHARING COMMENTS LIKE “YES U COULD” OR SHARING COMMENTS WHERE I’M JUST BEING SILLY –THE FUNNY MOMENT IS OVER B4 I FINISH SIGNING IT, SO WHY BOTHER SIGNING IT? BUT SOMETIMES NOW, I THROW IT OUT, & IF I’M HEARD & UNDERSTOOD, VERSUS BEING IGNORED, OR KEEPING IT IN MY HEAD, IT’S A BONUS, & EXCITING!).

ANYWAY, IN PRACTICE, MY LONGEST FUNCTIONAL PHRASE HAS 6 WORDS (“PUT LEFT FOOT ON FOOT REST”), & I USUALLY NEED 2 BREATHS 2 SAY IT. MY GOAL WAS TO USE 1 BREATH TO SAY IT, & TUESDAY MORNING I DID IT!

I ALSO HAD A GOOD LAUGH: A FUNCTIONAL PHRASE WAS ADDED 2 THE KEYRING I USE 4 SPEECH PRACTICE. IT READ: “JESS ROCKS”. (GUESS WHO ADDED THAT 2 MY LIST OF FUNCTIONAL PHRASES 2 SAY?) I LAUGHED SO HARD WHEN I FOUND IT–IT WAS LAMINATED & EVERYTHING, 2 LOOK LIKE THE OTHERS! U’D NEVER KNOW IT WAS ADDED, IF THE KEYRING WAS NEW 2 U!

THE BEST PART WAS HOW UNEXPECTED & QUIET IT WAS! & I BET IT’S BEEN THERE A WHILE, BECAUSE JESS HELPED ME PRACTICE THURS. NIGHT (& REQUESTED THAT PHRASE EXACTLY WHEN WE GOT 2 THE PLACE WHERE THE NEW “JESS ROCKS” CARD IS NOW), THEN I TOOK THE WEEKEND “OFF”, & I DID MY MONDAY PRACTICES W/O MY SPEECH BINDER , SO TUESDAY MORNING WASMY 1ST CHANCE 2 C IT, SINCE THURSDAY NIGHT, WHEN SHE HELPED ME! LOL

VACATION


I JUST RETURNED FROM THE 1ST FUN VACATION I CAN REMEMBER IN THE LAST 6.5 YEARS! WE STARTED THE WEEK AT UNIVERSAL. THERE, MK CARRIED ME 2 TRANSFER ME 2 A FEW RIDES. LONG STORY SHORT, L8R THAT WEEK, WE WENT 2 DISNEY, & AS THE WEEK PROGRESSED, I WENT ON MORE RIDES. THE 1ST FAST RIDE I DID WAS FAST TRACK (A HIGH SPEED ROLLARCOASTER W/SUDDEN STARTS & STOPS). I SERIOUSLY THOUGHT MK WAS KIDDING WHEN HE OFFERED 2 TRANSFER ME ONTO THAT! I THOUGHT MK & I WERE CRAZY 2 TRY–I KNOW THERE’S A DISNEY RIDE I NOW HATE, BECUZ IT TOSSES ME EVERYWHERE–BUT I STAY ALONE IN MY WHEELCHAIR, INSTEAD OF BEING HELD IN PLACE FIRMLY BY MK. STILL, I NEVER EVER IMAGINED ROLLER COASTERS! I WAS SURE THAT PART OF MY LIFE WAS OVER!

BY THE LAST NIGHT, I DID TOWER OF TERROR (A FREE FALL RIDE), & AREOSMITH’S ROCKIN’ ROLLERCOASTER (SUPER FAST, & WENT UPSIDE-DOWN TWICE) I WASN’T SURE IF I WAS EXCITED OR SCARED ON THE LATER–I SAT ALONE. I KNEW IT’D TEST MY NEW CORE MUSCLES & MY NECK MUSCLES. MK CINCHED ME IN SUPER TIGHT, & I DID AMAZINGLY WELL–WE EVEN GOT 2 GO TWICE!

above ARE PICTURES 2 PROVE I WENT…

INDEPENDENCE & WEBSITE CHANGES

PEOPLE ARE GENERALLY VERY CONSIDERATE. IF THEY C A NEED, THEY DO IT (LIKE IF I’M HEADED TOWARDS A DOOR, THEY OPEN IT). IT’S ALL NICE. EVEN STRANGERS ARE HELPFUL!

BUT I SEEM 2 BE IN A “TODDLER STAGE,”I SWEAR I HAVE HAD A SORT OF “REBIRTH”, & IN THE BEGINNING, WHEN I COULDN’T EVEN HOLD UP MU OWN HEAD, I WAS A HELPLESS “NEWBORN”), & OFTEN SAY, “I WANT 2 DO IT!” RECENTLY, MY DAUGHTER WAS TRYING 2 REACH SOMETHING, & THE WAY SHE WANTED 2 DO IT WASN’T SAFE, SO, SINCE MY CAREGIVER WAS THERE, I OFFERED HER HELP (NORMALLY, I LET KIDS STAND ON ME, IN ORDER 2 REACH, BUT THIS WAS SOMEWHERE I COULDN’T GO.)

SHE WAS VERY OFFENDED, & POINTED OUT HOW SHE FELT “GROWN UP” WHEN SHE DID STUFF HERSELF. VERY OBSERVANT! I, 2, FEEL THAT SAME SENSE OF ACCOMPLISHMENT, & FEEL MORE LIKE A CAPABLE ADULT!

ON THANKSGIVING, A SISTER-IN-LAW OFFERED 2 FEED ME PIE. I WAS GRATEFUL 4 HER WILLINGNESS, BUT I WANTED 2 TRY. IF I FAILED, I KNEW I COULD ASK 4 HER HELP. MY 1ST TRY FAILED, BUT THE 2ND TRY WORKED, AFTER TAKING INTO ACCOUNT WHAT I DID WRONG!

THE BEST AT THANKSGIVING WAS THAT IF I WANTED A FINGER FOOD, I DIDN’T NEED 2 ASK 4 IT, OR BE FED IT—I SIMPLY RAISED MY CHAIR 2 COUNTER HEIGHT, REACHED & GRABBED IT, & FED MYSELF IT ALL THINGS I WAS TOLD I’D NEVER DO AGAIN! I FELT SUCH UTTER JOY & GRATITUDE! EVERYTIME I WAS SEEN, I GIGGLED 4 JOY! I WAS SO HAPPY!

CHANGE OF SUBJECT:
1. THE SCRAPBOOK PAGES R UPDATED
2. A NEW BOOK WAS ADDED 2 THE RECOMMENDATIONS LIST
3. A FAQ SECTION WAS CREATED BY MOVING THE “SEARCH” SECTION OUT AND ADDING A SEARCH BAR TO THE RIGHT SIDE.

THIS WAS ADDED BECUZ I SAW A NEED: WHEN I HAD MY STROKE, FAMILY HAD 2 SCOUR THE INTERNET 2 LEARN ABOUT MY CONDITION, & I STILL GET QUESTIONS EITHER ABOUT MY DISABILITY, OR ABOUT BEING DISABLED. SO, I’M ADDING A SECTION ON MY WEBSITE 4″ FREQUENTLY ASKED QUESTIONS (FAQ),” FEEL FREE 2 SEND ME A QUESTION (MY EMAIL IS ON THE “CONTACT ME” PAGE).

THE FAQ SECTION OPERATES BASED ON THE CATEGORY THAT I LABEL MY POST WITH. SO, WHEN U CLICK “FAQ” ONLY POSTS LABELED WITH THE CATEGORY “FAQ” WILL SHOW UP – NONE OF MY OTHER POSTS. SO REGULAR READERS WILL NOT MISS MY POSTS 2 THE FAQ SECTION. HOWEVER, I MAY ANSWER SOME THINGS BY COPYING & PASTING, SO SOME THINGS MAY BE FAMILIAR 2 U! I WILL TRY 2 ANSWER AT LEAST 1 QUESTION WEEKLY…

GRATITUDE

IN OCT. 2010, THE LDS PROPHET, PRES. MONSON SAID, “My brothers and sisters, do we remember to give thanks for the blessings we receive? Sincerely giving thanks not only helps us recognize our blessings, but it also unlocks the doors of heaven and helps us feel God’s love.”

I RECENTLY TOLD THE TEENAGE GIRLS AT CHURCH THAT SHORTLY AFTER REGAINING THE ABILITY TO JOURNAL ON MY COMPUTER, MY FIRST FEW ENTRIES WERE MOSTLY NEGATIVE AND FOCUSED ON WHAT I COULD NOT DO AND ALL THE THINGS THAT MADE MY LIFE SO TERRIBLE. NEEDLESS TO SAY, THOSE ENTRIES WERE NOT EXAMPLES OF OPTIMISM AND GRATITUDE. AFTER LETTING MY HUSBAND READ THESE JOURNAL ENTRIES, HE SUGGESTED SOMETHING I HAVE MENTIONED B4: THAT I COMPILE A LIST OF THE THINGS I WAS GRATEFUL FOR. WHEN ALMOST EVERYTHING THAT I HAD WAS TAKEN AWAY, IT WAS HARD TO THINK THAT THERE WAS ANYTHING TO BE GRATEFUL FOR.
IT WAS A VERY DIFFICULT CHALLENGE FOR ME. IT WAS SO HARD TO THINK OF THE GOOD, AND NOT ABOUT THE BAD. I HAD TO START SMALL. VERY SMALL. AT FIRST IT WAS VERY DIFFICULT TO THINK ONLY ABOUT THE GOOD, AND DIS-REGARD THE NEGATIVE. HOWEVER, I RECOGNIZED THE BLESSINGS OF THE LDS PRIESTHOOD AND A LOVING FAMILY. ONE OF THE ONLY THINGS THAT WAS NOT AFFECTED WAS MY HEARING, SO I WAS BLESSED TO BE ABLE TO STILL ENJOY LISTENING TO MUSIC AND HEARING MY CHILDREN SING. I WAS WRITING THIS LIST ON MY OWN, SO I RECOGNIZED THAT I HAD REGAINED INDEPENDENCE THAT I WAS TOLD THAT I WOULD NEVER REGAIN. I GET GREAT PARKING NOW. I FEEL LIKE A QUEEN SINCE PEOPLE DO ALL THE MUNDANE TASKS FOR ME- LIKE FEEDING ME. IF I GET RUNS IN THE BACK OF MY NYLONS, PEOPLE CANNOT TELL SINCE THE WHEELCHAIR HIDES IT. I WAS GRATEFUL THAT I COULD USE SIGN LANGUAGE AND NOT HAVE TO BLINK TO COMMUNICATE ANYMORE (BUT I WAS THANKFUL FOR THE ABILITY TO COMMUNICATE BY BLINKING WHEN THAT WAS MY ONLY OPTION). I COULD STILL HELP MY KIDS WITH HOMEWORK. I GIVE THE BEST HUGS WHEN SOPHIA GETS HURT. PEOPLE TELL ME COOL SECRETS BECAUSE THEY THINK I WILL NOT AND CANNOT TELL ANYONE. I WAS GRATEFUL TO BE ALIVE.
MY LIST GREW AS I BECAME MORE AWARE OF THE MANY, MANY BLESSINGS THAT EVEN A PERSON IN MY SITUATION HAD, AND I WAS SURPRISED TO FIND THAT I EASILY WROTE ABOUT 20 BLESSINGS THE FIRST ATTEMPT. IN TIME, IF THERE WAS SOMETHING I HATED, I SEARCHED FOR WHY THAT WAS A BLESSING, AND ADDED THAT 2 MY LIST. IT HAS BEEN 4 YEARS SINCE I FIRST BEGAN THIS LIST, AND I ADD TO IT ON A REGULAR BASIS. IN MAKING MY LIST, I HAVE LEARNED TO LOOK A DIFFERENT WAY ON MANY THINGS THAT MAKE MY SITUATION DIFFICULT. THINKING THIS WAY HELPS ME COPE BETTER WITH MY SITUATION, AND TO HELP ME SEE GOD’S HAND IN EVERYTHING I DO. JUST LIKE MY LIST, IT IS IMPORTANT TO DO THE SAME WITH YOUR FAMILIES, AND CLING TO THE THINGS YOU APPRECIATE AND LOVE ABOUT EACH FAMILY MEMBER.

SPEAKING OF GRATITUDE, & IN THE SPIRIT OF THANKSGIVING, I’M CURRENTLY THANKFUL 4 MY POWER WHEELCHAIR & MY VOICE. LAST WEEK MY WHEELCHAIR BROKE AGAIN (IT’S OLD), & THOUGH I’M EXTREMELY GRATEFUL 4 THIS EXTRA POWERCHAIR, I MISS MY “REGULAR” POWERCHAIR, & WILL BE GLAD 2 GET IT BACK 2DAY, AFTER BEING W/O IT FOR 6 DAYS!!

I ALSO LOST MY VOICE. (SOUNDS FUNNY COMING FROM ME, BUT I LOST WHAT LITTLE I’D REGAINED, & COULDN’T EVEN SAY MY KIDS NAMES.) IT WAS LIKE THE BEGINNING, IN 2004…I 4GOT HOW NICE IT IS 2 HAVE RE-GAINED EVEN A TINY BIT OF VOICE.

MOST RECENTLY, I AM THANKFUL BECAUSE I CAN MOVE MY BELLY VOLUNTARILY. IT IS ONLY A LITTLE, BUT IT IS SOMETHING. IF IT GETS STRONGER, I MAY BE ABLE TO BREATHE VOLUNTARILY. THEN I COULD FORCE AIR THROUGH MY VOCAL CORDS AND I COULD REGAIN THE ABILITY TO TALK. I AM GRATEFUL FOR THIS SMALL MOVEMENT AND ALL OTHERS THAT WILL COME MY WAY.

I PREVIOUSLY JOURNALLED THESE:

• 11/7 WAS A “TALKING DAY” (I HAVE DAYS WHERE IT’S EASIER 2 TALK), & WITH WORDS, & NO SIGNING, I ASKED MY GIRLS,“WHAT R U DOING?” 1 OF THE GIRLS REPEATED MY QUESTION, 2 BE SURE I WAS UNDERSTOOD, & AFTER NODDING YES, SHE ANSWERED. I THEN POINTED & ASKED, “WHAT IS THAT?,” & THE OTHER GIRL REPEATED MY QUESTION, 2 BE SURE I WAS UNDERSTOOD AGAIN, & AFTER NODDING YES, SHE ANSWERED.

• ABOUT 2 WEEKS PREVIOUS 2 THAT, I TOLD MY MUSIC THERAPIST, “NO PIANO,” AS I POINTED AT MY PIANO, & SHOOK MY HEAD. SHE TOTALLY UNDERSTOOD ME! I WAS THRILLED! IT’S 1 THING 4 MY FAMILY 2 UNDERSTAND ME, OR A SPEECH THERAPIST, BUT IT’S ANOTHER 2 HAVE “USEFUL” CONVERSATION.

• 11/9 WAS ALSO EXCITING. THE GIRLS CAME HOME FROM SCHOOL, BUT I ONLY SAW SOPH. NORMALLY, I HAVE 2 DROP WHAT I’M DOING, SO I CAN SIGN, “WHERE IS JESSICA?”, OR I KEEP WORKING & WONDERING! I CAN’T RECALL THE LAST TIME I KEPT WORKING, & SIMULTANEOUSLY ASKED A QUESTION, BUT EVERY NOW & THEN I TRY IT, JUST 4 FUN! ONLY THIS TIME, SOPH UNDERSTOOD ME, & ANSWERED! GRANTED, IT’S VERY POSSIBLE THAT SHE ONLY FIGURED OUT MY WORDS, DUE 2 THE CONTEXT, BUT IT FELT GOOD!

WHEN I 1ST LOST THE ABILITY TO SPEAK, I BEGAN BY BLINKING IN ORDER TO SPELL WORDS, THEN “GRADUATED” TO FINGER-SPELLING WORDS, & I CAN NOW SIGN SOME WORDS. THE FIRST SIGN WORD I LEARNED, WAS FOR THE WORD “THANK YOU.” I WAS THRILLED! IT FELT SO GOOD TO BE ABLE TO SAY “THANK YOU,” WHENEVER SOMEONE HELPED ME! I BELIEVE THAT IN ORDER TO LEARN GRATITUDE, WE NEED TO SAY, “THANK YOU.” LUCKILY, WHEN I LOST MY VOICE THIS TIME, I COULD STILL MOVE & SIGN “THANK YOU.”

HOWEVER, I FINALLY GOT MY VOICE BACK A LITTLE YESTERDAY, & CAN SAY MORE AGAIN. I WAS DELIGHTED THAT WHEN ZACH ASKED ME AFTER DINNER WHERE DAD WENT, I WAS ABLE 2 SAY “MAILBOX” CLEARLY, & BE UNDERSTOOD! EVEN ZACH WAS IMPRESSED!

HAVE A HAPPY THANKSGIVING! I KNOW I WILL!

My list of “I can’s”

IN , “MAN’S SEARCH FOR MEANING,” VICTOR E. FRANKL SAID:. “… a very trifling thing can cause the greatest of joys.” [Man’s Search for Meaning, Pages 61-62.]
I CAN MOVE ONLY MY HEAD & HAVE LIMITED USE OF MY RT. ARM, BUT I CAN DO SO MUCH! CONSIDERING MY LAST POST, HERE’S My list of “I can’s”:
1. BREATHE ON MY OWN
2. “TUBE FREE” (CATHTER, TRACHE, FEEDING TUBE ALL GONE)
3. I SPEAK A MODIFIED ASL–I CALL IT “JENNY-ESE.” LOL
4. USE A POWERCHAIR
5. USE A TOILET
6. TURN ON/OFF LIGHTS
7. TURN ON/OFF TV
8. RELEARNED TO SWALLOW
9. RELEARNED TO SUCK FROM STRAWS
10. WIPE FACE CLEAN
11. FEEDMYSELF W/O HELP
12. OPEN/CLOSE MOST DOORS
13. SCRAPBOOK
14. TYPE (EMAILS, JOURNAL)
15. PUT IN/TAKE OUT CDS
16. OPEN/CLOSE CD CASE
17. UNWRAP STUFF (LIKE SOME FOOD & OTHER PACKAGED ITEMS—LIKE A CD CASE)
18. TURN MY COMP. ON/OFF
19. PUT CDS IN MY COMP.
20. STICK OUT MY TONGUE
21. ARM WRESTLE–& WIN!
22. DO KNEE BENDS
23. LEAN FORWARD
24. “TEACH” (I TEACH GIRLS AT CHURCH, WHO R 12-18 YRS.)
25. PAINT-I WATERCOLORED
26. LEARNING 2 TALK
27. SAY SOME WORDS & PHRASES
28. PLAY RECORDER
29. PLAY PIANO
30. PLAY AUTOHARP
31. PLAY GUITAR
32. VELCRO MY LEFT ARM
33. SOMETIMES MOVE MY OWN BUTT!
34. GIVE MYSELF MEDICINE
35. HELP CARE 4 MOST BABIES
36. ACTIVELY PARENTING MY KIDS
37. THROW AWAY TRASH
38. GIVE WAGON RIDES
39. I’M EQUIPPED 2 RIDE BIKES
40. PLAY RED ROVER
41. BAKE PIES
42. COLOR
43. WRITE
44. BOWLING
45. SCRATCH THE TOP OF MY HEAD
46. TAKING THE BREAD IN SACRAMENT, AT CHURCH
47. LIFT LEGS, 2GETHER OR ALTERNATING
48. ON OCCASION, I CAN NOT ONLY PUT MY RIGHT FOOT ON MY FOOTREST, BUT ALSO PULL IT BACK ON MY FOOTREST, W/O NEEDING HELP
49. IF HELD RIGHT, I CAN WALK
SURE THERE’S MORE …