Recovery

PBA

I REALIZED THESE TRIGGERS 2 MY PBA RECENTLY:

I'VE LEARNED MANY TRICKS 2 STOP MY TEARS, WHEN I''M SIGNALED A WARNING SIGN THAT TEARS R COMING, BUT I HAVE 2 BE VERY CAUTIOUS & NOT ALLOW ME 2 BE EMOTIONAL, RT. B4 I GO SOMEWHERE EMOTIONAL, LIKE, SAY, CHURCH—OTHERWISE, MY EMOTIONS WILL BE OUT OF WHACK, & LAUGHTER/TEARS THAT I NORMALLY COULD CONTROL, I CAN'T CONTROL, AS WELL.

I HAVE ALSO DISCOVERED THAT I LAUGH HARDER AT TIMES BECAUSE I HEAR SOME1 EXPRESS PRECISELY WHAT I'D THOUGHT, BUT WASN'T GOING 2 BOTHER 2 FINGERSPELL IT. (SOMETIMES, THOUGH, IT ISN'T SAID, SO I LAUGH 2 MYSELF, AS I "THINK SOMETHING FUNNY IN MY HEAD.")

SUNDAY

IT WAS MEALTIME, & MK WAS BUSY. ZACH COOKED RAMEN, FED THE GIRLS & HIM SOME, THEN, WHEN I WAS SURE IT HAD TIME 2 COOL ENOUGH 4 ME, HE CUT & FED ME! SO SWEET! HE ROCKS!

IT WASN'T PERFECT (I HAD A SHOWER), BUT I'M USED 2 WAITING UNTIL MK CAN FEED ME, WHICH CAN BE LATE IF HE'S REALLY BUSY. I DON'T MIND—I RARELY FEEL HUNGER PAINS, BUT I'VE FELT THEM MORE LATELY, AT THE 2 MEALS I DO EAT.

THE KIDS R USED 2 DOING MORE THAN AVERAGE KIDS. I KNOW I NEED THEM 2 BE EXTRA RESPONSIBLE, AS MUCH, OR MORE THAN, MK DOES. THE MORNING I ALONE GOT THEM READY 4 SCHOOL, WOULD NEVER HAVE BEEN POSSIBLE W/O THEM BEING SUPER RESPONSIBLE—THE TRICK IS 2 EXPECT MORE & DON’T BABY THEM. OTHERWISE THEY BACK TRACK.

AS A MOM, I USED 2 THINK THEY "DESERVED IT" WHEN SOME1 BABY'D THEM. BUT NOW I C IT IS LIKE ME: IT'S TONS EASIER 2 JUST ASK & HAVE SOME1 DO SOMETHING 4 ME, BUT IF IT'S WITHIN MY CAPABILITY, THE STRUGGLE CAN BE WORTH IT, & I CAN ACCOMPLISH MORE THAN I THOUGHT POSSIBLE. ACCORDING 2 MY MRI, I BELIEVE I SHOULD JUST BLINK…IT’S BAD. BUTI DIDN’T KNOW IT WAS THAT BAD, SO I KEPT TRYING. I KNEW I WAS LOCKED-IN, BUT NOT KNOWING WHY—IT GAVE ME THE ABILITY 2 STRETCH MYSELF, SINCE I HAD NO REASON 2 DOUBT MYSELF. (MY FAV. QOUTE IS "Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, “I will try again tomorrow”. — Anonymous) KIDS CAN BE THAT WAY, & LOVE THE CHANCE 2 BE THE "ADULT." THE TRICK NOW, IS 2 NOT FRUSTRATE THEM, BY STRETCHING 2 FAR, & BEYOND THEIR CAPABILITIES! (I'VE FELT THAT 2, & IT'S AN AWFUL FEELING!)

CONFERENCE IN CLEVELAND

I “SPOKE” (MARK TRANSLATED MY ASL) RECENTLY AT A NEURO. DOCTOR’S CONFERENCE IN OHIO. IT WENT REALLY WELL & I'LL "SPEAK" AGAIN IN FEB. SOMEWHERE ELSE 4 A NATIONAL CONFERENCE 4 THE AMERICAN STROKE ASSOCIATION. THESE R PICS FROM IT—I WAS THE ONLY ONE "SPOKE," BUT I MET ANOTHER GIRL, CRISSY (& HER FAMILY), WHO HAD THE SAME DOCTOR ALMOST 2 YRS. AGO & IS ALSO LOCKED-IN.

UPON RETURNING, ODDLY, MY DOUBLE VISION WAS WORSE, FROM NOT FOCUSING MY EYES HARD 2 READ. IT CAN STILL BE TRICKY 2 READ AT TIMES, BUT MY EYES HAVE MOSTLY ADJUSTED 2 THEIR "OLD WAYS."

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GONE

I’M “SPEAKING” AT THE DOCTOR’S CONFERENCE IN OHIO NEXT WEEK. THE KIDS STAY, BUT MARK & I R DRIVING. IT'LL BE AWHILE B4 I POST, BUT PRAYERS R WELCOME 2 CONTROL MY PBA & REMEMBER EVERYTHING (ESP. SINCE I'D PURPOSELY BLOCKED OUT A LOT, SO I COULD 4GET STUFF & MOVE ON, & NOW I NEED 2 MAKE THOSE DAYS COME BACK.)

WHEN I'M GONE, HERE'S SOME FOOD 4 THOUGHT:

"IT'S NOT WHAT HAPPENS 2 U, BUT HOW U REACT THAT MATTERS." –EPICTETUS

"LIFE IS 10% WHAT U MAKE IT & 90% HOW U TAKE IT." –IRVING BERLIN

WHAT KIND OF THINGS I AM CAPABLE OF DOING

BEEN THINKING OF WHAT KIND OF THINGS I AM CAPABLE OF DOING THAT OTHERS MIGHT BE UNAWARE OF:

• WRITING/DRAWING
• OPEN CD CASES & PUTTING THEM IN MY COMP.
• RETRIEVING K,EENEX FROM OUT OF A CASE
• RETRIEVIN STUFF FROM MY WHEELCHAI POCKET
• VOICE—I SAY "UH-HUH" ALL THE TIME & OFTEN WORDS I SIGN, I CAN VOCALIZE VOWE;S (LIKE "I O U" 4 "I LOVE U"
• WALK W/HELP IN SWIM THERAPY (BUT NOT ON DRY LAND)
• RETRIEVIN THINGS LIKE REMOTES IF I GET IT ON MY RT. SIDE & IT'S ON A TABLE, IN A DRAWER, OR ON SHEETS ON A BED, SO I CAN PULL THE SHEETS 2 ME
• OPEN/CLOSE R FRONT DOOR BY THE HANDLE
• TURN ON/OFF A LIGHT SWITCH
• PLAY PIANO, GUITAR & AUTOHARP W/HELP.
• GET ON MY COMP. ALONE (NO TRAY—FREE-STANDING DESK)
• ALTERNATE 2 STRAIGHTEN LEGS
• TEACH A SCRAP. CLASS
• ITCH FACE
• WHEN LAYING, RAISE ARM STRAIGHT UP
• LEAN FORWARD & LEAN 2 THE RT.
• USIMG MY ARM SUPPORT, FEED MYSELF

THE KIDS WOULD ADD: "SUPER JUMPY." IN FACT, SUN., 9/18, THE KIDS HAD A BOOTH OF STUFF THEY WERE SELLING, TITLED: "THINGS 2 SCARE MOM." I JUMP GOOD.

REMEMBER THIS:
ALL THE KIDS DELIGHT IN MY FEAR OF SPIDERS. (SOMETIMES, I SWEAR IT'S ARACHNAPHOBIA.) I CAN KNOW A SPIDER IS FAKE & STILL FREAK OUT, JUMP, & MY HEART RACES, IF I TOUCH IT. (BUT IT HAS 2 BE A SPIDER &, SO MY VISION IS NOT A FACTOR, I TOSS THEM UNLESS THEY'RE ODDLY COLORED OR HUGE.) DO IT 2 MUCH & I FEEL I'M HAVING A HEART ATTACK. BUT I LAUGH—MY REACTION IS FUNNY & HEARING FAM. LAUGH, THANKS 2 PBA, IT TRIGGERS A LAUGH RESPONSE THAT I CAN MAKE A BIGGER LAUGH.