“IF SOMEONE SAYS YOU CAN’T DO SOMETHING, SAY, ‘YES I CAN, BECAUSE I’M DOING IT RIGHT NOW!’ ”
DINNER FOR SCHMUCKS

IT’S INTERESTING HOW I CAN HAVE A CONVERSATION WITH PEOPLE JUST BY THEM TALKING, & ME NODDING. HOWEVER, I CAN’T EXPRESS HOW MUCH MY LEVEL OF COMMUNICATION IMPROVED WHEN I WENT FROM BLINK-SPELLING 2 FINGERSPELLING, THOUGH IT’S ACTUALLY THE MINORITY WHO CAN SIGN. IF THEY DON’T SIGN, BUT IF WE E-MAIL, QUITE OFTEN, THOSE WHO DON’T SIGN ARE ABLE 2 GUESS MY NON-VERBALIZED THOUGHTS. MY LEVEL OF COMMUNICATION AGAIN INCREASED WHEN, A WHILE AGO, MY HANDWRITING BECAME FAR MORE LEGIBLE, THROUGH PRACTICE & BY DEVELOPING MY FINE MOTOR SKILLS. IT HAS HELPED ME SEEM MORE APPROACHABLE, IF I KEEP MY BOOGIE BOARD (FROM BROOKSTONE) VISIBLE.

NOW, MY LEVEL OF COMMUNICATION CONTINUES 2 INCREASE. I HAVE BEEN TRYING 2 SAY MANY THINGS AT HOME, B4 I SIGN, NOD, ETC. (THOUGH SOMETIMES THE VERBAL RESPONSE TIME IS SO SLOW, THAT IT COMES AFTER I SIGN OR NOD (THAT’S ALWAYS INTERESTING!)

MY MUSIC THERAPIST IS NUMBERED AMONG THOSE WHO DON’T SIGN. SHE WAS FINE W/ME NOT TALKING, BUT ME BEING ABLE 2 WRITE HAS HELPED INCREASE MY PROGRESS IN THERAPY. MONDAY, THOUGH, WE WERE ABLE 2 HAVE A VERBAL CONVERSATION WITH HER STILL DOING MOST THE TALKING BUT I WAS ABLE 2 SAY “HI,” “I’M GOOD,” ”ELEVEN,” “NEW YORK”, “NO WAY,” & A FEW OTHER SINGLE WORDS.IT’S ALWAYS EXCITING WHEN A NON-FAMILY MEMBER UNDERSTANDS ME, THOUGH THEY TEND 2 BE AT MY HOUSE (I’M GETTING BETTER AT MY PARENTS’ HOUSE & SOMETIMES AT CHURCH, BECUZ I’M THERE A LOT) BUT RARELY DOES A SENTENCE COME OUT WELL ENOUGH, SINCE I CAN’T SAY MUCH WITHOUT SLURRING, & I ONLY CAN SAY ABOUT ½ OF THE CONSONANTS.. (I CAN SAY ALL VOWELS, & THE FOLLOWING CONSONANTS: B, D, L, M, N, V, W, & SOMETIMES C, K, G, P, R—USUALLY, I NEED 2 LAY DOWNTO DO SOME OF THESE! LOL)

SO, IMAGINE MY SURPRISE WHEN I POINTED & SAID, “THE MIRROR IS OVER THERE”, & SHE UNDERSTOOD (GOOD THING 2, BECUZ IF I GET A, “HUH?” & TRY 2 REPEAT IT, IT IS NEVER AS CLEAR AS THE SPONTANEOUS RESPONSE)!

HOPE YOUR 4TH WAS BETTER THAN OURS–(WE HAD A BURN BAN — HOW DO U CELEBRATE THE 4TH OF JULY W/NO FIREWORKS?!?) INSTEAD, WE SAW VIDEOS/DVDS OF FIREWORKS, & SINCE ZACH WOULD BE GONE BACKPACKING WITH THE SCOUTS ON HIS B-DAY, WE CELEBRATED ZACH’S WOULD4TH B-DAY EARLY, & I WISHED WE’D HAD SPARKLER’S 4 ZACH’S CAKE! LOL

THE 12TH WAS ZACH’S REAL 14TH B-DAY. IT WAS STRANGE WITH HIM GONE. I HAVE A COMPUTER PROGRAM WHERE I CAN CREATE CUSTOMIZED WORD LISTS, & RECORD PEOPLE “MODELING” THEM, SO I CAN PRACTICE MY SPEECH… WHILE ZACH WAS GONE, I PLAYED A LIST W/ZACH SAYING THE NAMES OF RESTURANTS ON MY SPEECH COMPUTER PROGRAM. JESS RAN TO MY CRAFT ROOM, CERTAIN HE WAS ON A WEBCAM OR SOMETHING…IMAGINE HER DISAPPOINTMENT 2 C ONLY WORDS.

MORE ABOUT SPEAKING: TUES., JULY 19TH, I WAS NEAR OUR DOOR & MK WAS FARTHER AWAY, IN OUR CLOSET, & SOPH (FIA) ASKED HER DAD A QUESTION THROUGH A CLOSED DOOR, BUT COULDN’T HEAR HIS ANSWER, SO I RELAYED IT. IT WAS JUST THE WORD, “YES,” BUT SHE HEARD ME & UNDERSTOOD! I HAVE BEEN FRUSTRATED WITH MY SPEAKING ABILITIES (1 DAY/MOMENT MY VOICE IS THERE, & THE NEXT IT HAS DISAPPEARED!), SO IT WAS A BOOST I GREATLY NEEDED!

IN THE HOSPITAL, I HAD A TRACHE. WE WANTED IT OUT SO MY DOCTOR ASKED ANOTHER DOCTOR/A SPECIALIST TO REPLACE MY TRACHE WITH A SMALLER TRACHE TO SEE IF I COULD HANDLE IT. THE SMALLER TRACHE WOULD ENABLE AIR TO PASS OVER THE VOCAL CHORDS SO I COULD RELEARN SPEECH. WHEN THE SPECIALIST FOUND OUT THAT I WAS NOT ALREADY CAPABLE OF SPEECH, HE WENT ON A TIRADE OF HOW HE WAS WASTING HIS TIME WITH A PERSON WHO WOULD NEVER SPEAK OR BE WITHOUT A TRACHE AND SO ON.

EVERYTHING I HEARD ABOUT MY TRACHE WAS NEGATIVE, BUT MY SISTER & MK SHOWED UNFAILING FAITH IN ME, & FOUGHT 4 ME. I THINK IT ONLY BUILT MY STRENGTH UP 2 FIGHT & PROVE THE DOCTORS’ WRONG. I ALSO HAD MUCH POSITIVE INFLUENCES FROM FAM. MEMBERS, & ANY PRAYERS IN MY BEHALF (WHICH, I DON’T DOUBT THEIR MIRACULOUS HELP, AS I SHOULD BE DEAD OR “JUST BLINKING”.

LATELY, I HAVE BEEN SPENDING LESS TIME AT THE COMPUTER, & DOING MORE WITH MY FAMILY, IN ORDER 2 GET MORE “TALKING TIME” (SO WHEN I GET TO MY COMP., I’M 2 BUSY OR 2 FRUSTRATED 2 TYPE A POST!) I ALSO AVOID WRITING DURING ANY DAY THAT THERE IS A FRUSTRATION, OR SOMETHING, SO I DON’T “CEMENT” ANY NEGATIVE THOUGHTS…BUT THOSE DAYS EXIST JUST AS MUCH, AS I STRUGGLE W/A DRAMATIC LIFE CHANGE, & RE-LEARN THINGS. I HAVE A WHOLE NEW RESPECT 4 TODDLERS!

SPEAKING OF TODDLERS, MAYBE I’VE SHARED THIS STORY B4, BECUZ I’VE SAID B4 THAT I FEEL LIKE A TODDLER, WHO ONLY THE FAMILY UNDERSTANDS. SOMETIMES TODDLER’S GET ME, & I GET THE TODDLER:

THERE WAS 1 TIME A MOM DIDN’T UNDERSTAND HER TODDLER, & EVEN THOUGH I UNDERSTOOD THE TODDLER, I DOUBTED MYSELF BEING RIGHT, UNTIL THE TODDLER’S MOM SAID,”OH! U SAID…” & THE TODDLER’S MOM SAID WHAT I THOUGHT THE TODDLER HAD SAID.

BUT WHILE I WAITED 4 THE MOMENT OF ENLIGHTMENT FROM THE MOM (ABOUT WHAT WAS SAID BY THE TODDLER), & SAW THE TODDLER & HER MOM’S FRUSTRATION TURN 2 JOY AT THE TODDLER FINALLY FEELING UNDERSTOOD, HOW I COULD RELATE!

IN THE BEGINNING, I RECALL THE STRUGGLE 2 HOLD UP MY HEAD, & UNDERSTANDING A NEWBORN BABY’S STRUGGLE. THEN I COULD GRADUALLY RELATE 2 OLDER BABIE I’VE MISSED A FEW DEVELOPMENTAL STAGES (LIKE ROLLING OVER) BUT AT LEAST I’M STILL PROGRESSING, AFTER 7+ YEARS!

AROUND THE FOURTH, SOPH MENTIONED HOW COOL IT IS THAT HER MOM NOW TALKS MORE THAN SIGNS (SOME DAYS, THAT’S TRUE, ESPECIALLY SINCE MY DAUGHTER, SOPH, HAS A KNACK 4 UNDERSTANDING ME, EVEN WHEN I, MYSELF, THINK THAT THERE’S NO WAY I WAS JUST UNDERSTOOD!).

I HAVE ABSOLUTELY NO RECOLLECTION OF THE HOSPITAL INCIDENT EXCEPT THE FIRE IT STIRRED TO SPEAK AGAIN AND WHAT I WAS TOLD (THAT I WAS “A WASTE OF HIS TIME”).

BUT NOW, EVEN ON A BAD DAY, I WISH THAT DOCTOR COULD C ME NOW! I’VE STILL GOT PLENTY WRONG, BUT AM VOCALIZING, & SAYING THINGS! MOST LIKELY IT WAS INITIALLY A DEFENSE MECHANISM TO BLOCK HIM OUT, BUT MARK ALSO GAVE ME A PRIESTHOOD BLESSING THAT DAY TO HELP CALM ME DOWN. DURING THAT BLESSING, I WAS TOLD TO FORGIVE AND REMINDED OF CHRIST’S EXAMPLE: “FATHER, FORGIVE THEM; FOR THEY KNOW NOT WHAT THEY DO.”

I AM NO EXPERT AT FORGIVENESS, BUT THERE HAS BEEN A FORGIVENESS THAT ASSISTED ME IN FORGETTING WHAT HURT ME SO GREATLY. WHO KNOWS WHAT KIND OF DAY THAT SPECIALIST WAS HAVING OR WHAT KNOWLEDGE HE HAD?

I LOVE TALKING! I’M NOT GREAT AT IT, BUT GET BY AT HOME A LOT (STRANGELY, I CAN SAY MORE, & BE LOUDER IN MY HOME).

LAST WEEK ON THURSDAY NIGHT, ALL THE KIDS WERE IN THEIR ROOMS, & WHILE THEY ALL ANSWER 2 MY BELL (HOPEFULLY–I HAVE A DOORBELL VELCROED 2 MY CHAIR, & THE # OF RINGS CALLS OUT TO CERTAIN PEOPLE), BUT I WANTED 2 USE MY WORDS. THE 1 THAT’S THE MOST EASILY UNDERSTOOD IS “SOPHIA,” SO I CALLED 4 “OPHIA,” & SHE NOTED HOW THAT’S THE 1 BAD THING THAT I CAN SAY HER NAME! LOL

THEN, THERE WAS A FEW DAYS THIS WEEK WHERE I WAS SO TIRED & SICK, THAT I COULDN’T TALK AGAIN (TALKING IS HARD WORK!) IT ACTUALLY SORTA DWINLED, UNTIL I COULDN’T TALK— BUMMER WAS, I DIDN’T EVEN KNOW I WAS SICK, UNTIL I GOT SUPER SICK! INSTEAD, I WAS BEYOND FRUSTRATED, BECUZ I HAD NO IDEA WHERE OR WHY MY VOICE WAS GONE, WHAT I’D DONE WRONG, OR HOW TO GET IT BACK (PRACTICE WASN’T HELPING ME)!

BUT LIKE MAGIC, ONCE THE ANTIBIOTICS WERE IN ME 30 HOURS, I WAS TALKING LIKE B4!

THURSDAY NIGHT, SOPH TOLD ME HER LAUNDRY WAS DONE WASHING & JUST NEEDED 2 BE FOLDED . I TOLD HER, WITH MY WORDS, SOMETHING LIKE “GO FOLD IT NOW!” SHE LOOKED AT ME WITH A “DANG IT!” EXPRESSION, & SAID, “MY MOM CAN TALK (DANG IT).” LOL NOT LIKE I WOULDN’T NORMALLY SIGN IT!

FRIDAY, I NEEDED SOME MEDICINE, & ASKED ZACH 2 GET IT. HE SAID, “IN 5 MINUTES.” SO AFTER 5 MINUTES HAD PASSED, I TOLD ZACH WITH MY WORDS, “IT’S BEEN 5 MINUTES! GO GET IT!”

EARLIER FRIDAY, I ALSO TOLD SOPH 2 “GO GET IT” WITH MY WORDS, WHEN SHE WAS TRYING 2 NOT GO GET SOMETHING, & SHE RESPONDED 2 CARA (MY CAREGIVER/ASSIssTANT) W/THE FUNNIEST RESPONSE: “SOMETIMES I LOVE THAT MOM CAN TALK, BUT SOMETIMES I HATE THAT MOM CAN TALK, & THAT I UNDERSTAND HER!” LOL

BUT WAIT! IT GETS BETTER! SATURDAY MORNING SHE AS KEDM WHY CAN U TALK?!?” I CAN ONLY THANK HER & OTHERS 4 KEEPING ME IN THEIR PRAYERS! SOMETIMES IT TAKES AWHILE, BUT THOSE PRAYERS ARE ANSWERED…BET MY KIDS WILL NOW BE MORE CAREFUL OR SPECIFIC WHAT THEY PRAY FOR! LOL

FRIDAY OUR CLEANERS WERE HERE, & THEY ALWAYS ASK HOW I AM IN SPANISH,. USUALLY, I NOD (SOMETIMES I SAY HI, AS I NOD), SMILE, & THINK “BIEN” (GOOD/FINE).

BUT THIS TIME I NOT ONLY SAID “BIEN,” BUT SHE ALSO UNDERSTOOD ME, SMILED & WAS SURPRISED TOO, & RESPONDED W/A FEW MORE SPANISH SENTENCES I UNDERSTOOD! NOT ONLY DID I SPEAK,, BUT I SPOKE SPANISH!

I HAVE NO IDEA WHERE IT CAME FROM—I HAVE HAD A HARD TIME BEING UNDERSTOOD THE REST OF FRIDAY!

SOMETIMES WHEN I’M ASKED A QUESTION, I JUST BLURT OUT A CLEAR ANSWER (WHATEVER I’M THINKING), & IF I’M ASKED 2 REPEAT WHAT I SAID, I CAN’T DO IT AGAIN, OR IT COMES OUT LESS CLEAR! CRAZY!