DEAR LORD I HAVE BEEN HERE FIVE DAYS

MY DEAREST LORD 

DO I HAVE TO LEARN THESE LESSONS

SO SOON?

I AM OUT OF MY COMFORT ZONE 

BUT NOT 

THAT FAR OFF

MY ALS IS NOT ALL CONSUMING 

AND DISABLING BUT IT SOON WILL BE.

 WHY NOT KEEP ME OUT OF A NURSING HOME AS LONG AS POSSIBLE

I WILL BE SINGING THIS SONG SOON ENOUGH.

OTHER ALS FAMILIES 

 SAY THEY TRAIN VOLUNTEERS TO HELP

 IT IS NOT ALWAYS PAID NURSES

 THAT NEED TO BE HAD.

 DON'T BE TO QUICK TO THE DRAWAL

ISN'T THIS LIFE WORTH IT.

 AS LONG AS I CAN GET AROUND AROUND,

AS A NORMAL HUMAN BEING

WITH A LITTLE HELP

HELP ME FREE AS A BIRD.

 HELP ME  ENJOY MY GRAND CHILDREN

I KNOW THIS REHAB WILL HELP ME GET STRONG

  

 I AM TAKING PART IN THE PHYSICAL THERAPY

 SPEECH THERAPY WILL BE BENEFICIAL

  I  KNOW I ALREADY TAKE A LOT MORE CARE

I NEED A LOT OF ADAPTIVE GADGETS

I HAVE SOME AND NEED MORE.

 SOMEONE SAID DID YOU MAKE NEW FRIENDS

 HELL LORD THIS IS NOT A SOCIAL CALL

  

 THIS IS THE TWILIGHT OF MY LIFE.

 I WANT OUT OF HERE 

AND

SOON AS

I

LEARN THE LESSONS 

I AM TO BE TAUGHT.

BUT LORD WHY 

   WHY DO I SEE MY ROOM MATE 

THE WAY I WILL BE SOON ENOUGH.

HAVING TO HAVE EVERY HUMAN NEED 

TAKEN CARE OF BY OTHERS.

MY DESTINY

 BUT LORD TELL OTHERS 

 NOT TO PUT ME HERE UNTIL I CAN'T DO FOR MY SELF AND 

THEY HAVE TO SACRIFICE TOO MUCH.

BELKIS HAD HER SISTER TAKE CARE AND LIVE WITH HER MOTHER.

RIGHT NOW I AM NOT DIIFICULT

AND CAN LIVE ON MY OWN

 OR

 STAY HERE FOR A WHILE AND STAY THERE FOR A WHILE

WHY DOES HAVE TO BE STAY ON MY OWN OR GO TO A NURSING HOME

THERE SHOULD BE SOME IN BETWEEN TIME.

I AM NO TROUBLE

I PRAISE YOU LORD

FOR THE EXPERIENCES OF LIFE

THAT YOU HAVE AFFORDED ME  THE OPPORTUNITY 

TO UNDERSTAND HUMAN KIND

BUT THIS TAKES THE CAKE

EVERYONE WANTS THEIR PIECE OF THE CAKE

AND

EAT IT TO!!!!

TAKE CARE OF MOM  (SISTER)

GET HER NEEDS MET

AND

EVERYTHING WILL BE OK

WELL LORD

EVERYTHING IS NOT OK!

MY SISTER WANTS TO HELP

MY SONS WANT TO HELP 

DICK WANTS TO HELP

MY FRIENDS WANT THE BEST

EVERYONE WANTS THE BEST

BUT JUST MAYBE THEY HAVE ROSE COLORED GLASSES
  
BUT JUST MAYBE THEY DON'T KNOW WHAT IS BEST FOR ME.

THE NURSE CAME IN AND SAID

GIVE IT TIME

WE WOULD GET TO KNOW EACH OTHER

WELL I BELIEVE I COULD HAVE GONE HOME 

OR GONE TO SOMEONE ELSE'S HOUSE

WHERE DOES MONEY PLAY A PART

WHERE DOES TIME PLAY A PART

WHERE DOES SACRIFICE PLAY A PART

WHERE DOES CONVENIENCE PLAY A PART

WHAT ABOUT THIS

WHY AM IN THE STORM OF MY LIFE?

ALONG WITH THAT THEIR ARE STORMS OUTSIDE

WHAT LORD?

SHOW ME

WHAT AM I TO LEARN OR UNDERSTAND?

GOD YOU CHALLENGE THE DEPTH OF MY SOUL

GOD WE STARTED THIS JOURNEY TOGETHER

AND

WE WILL BE TOGETHER AT THE END

I CHALLENGED YOU AT THE BEGINNING 

 TO SHOW PEOPLE WHAT YOU CAN DO WITH AWFULL

WELL LORD IT IS STILL AWFULL

BUT I AM SURVIVING.

NOBODY PROMISED ME A ROSE GARDEN

BUT AS A HUMAN 

 I WOULD SAY 

LORD

TAKE THIS DISEASE AND SHOVE IT

BUT

AS A CHRISTIAN WOMAN 

I WOULD SAY 

 LORD


GIVING A HEALING LORD


OR TAKE ME HOME WITH YOU

WHICH WOULD I CHOOSE

I CAN'T MAKE UP MY MIND

I AM A WOMAN

SO LORD I HAVE NO CHOICE IN THE MATTER

IT IS ALL UP TO YOU

I WILL JUST DO MY PART TO TOLERATE

THIS AWFUL DISEASE

AND TRY AND MAKE SENCE 

OF IT THE BEST WAY I KNOW HOW.

THE WAILING AND BAWLING AND SOBBING

LORD COULD YOU PLEASE GET A HANDLE ON THAT

I DON'T SEEM TO BE ABLE TO DO A DAMN THING WITH

THESE EPISODES!

IT REALLY TAKES A LOT OUT OF ME

I CAN'T BREATE

MY HAND SPASMS

PLEASE LORD GIVE ME

THE STRENGTH TO CONTINUE ON

MO MATTER HOW DIFFICULT

IT BECOMES

THIS HOSPITAL STAY

HAS CHANGED MY LIFE FOREVER

I AM NO LONGER THE JANE 

WITHOUT THE SCARS OF ALS

I NOW HAVE MY FIRST OFFICIAL SCAR

A FEEDING TUBE

HELP TO UNDERSTAND WHAT MY FAMILY 

IS TO DO WITH THIS 

DIFFERENT AND STRANGE

NANA

ALS IS ALL CONSUMING 

IT AFFECTS EVERYTHING

AND THEY TELL YOU YOU WILL GET WORSE 

EACH DAY

AND 

YOU WON'T GET BETTER

AND 

YOU WILL DIE

HOW CAN ALS NOT PROFOUNDLY AFFECT

ALL WHO SEE ITS

ROOTS

PLEASE LORD GIVE ME THE STRENGTH

TO ENDURE

I DO PRAISE YOU ANYWAY

THE FLOOD GATES OPEN

MY DEAREST LORD

IT AIN'T FUNNY

I HAVE ALWAYS SEEN THE HUMOROUS SIDE OF LIFE'S LITTLE TREASURES

BUT LORD THIS IS MORE THAN I CAN HANDLE

DO YOU KNOW HOW TO MUTES SOMEONE WHO CAN'T TALK.

TAKE THEIR PEN OR PAPER AWAY  

 GREG CALLS THAT MUTING MOM

 I AM REALLY AT A LOSS

WHEN I CAN'T SPEAK

  

 IT AFFECTS EVERYTHING YOU DO.

LET'S TALK ABOUT IT GOD, JUST YOU AND ME. 

 IF I AM GOING TO LEARN A LESSON FROM THIS,
IT IS BEYOND ME.

 I WENT TO CHAPEL AT THE HOSPITAL THIS MORNING

A SONG WAS SUNG 

 DO YOU KNOW WHAT IT FEELS LIKE
ENJOY SINGING 
ESPECIALLY

CHRISTIAN MUSIC.

THANK YOU LORD THAT KURT AND OTHERS GAVE ME A COMPLIMENT

ON MY VOICE AND ASKED ME INTO THE CHOIR.

I ALWAYS HAD A PECULIAR FEAR OF SINGING IN A CHOIR. 

 I KNEW I LOVED TO SING FROM THE TOP OF MY HEAD TO THE BOTTOM OF MY FEET.

I STILL CAN MOVE SOME OF THE PARTS TO RHYTHM

 BUT I FEEL PEOPLE LOOK AT ME AND WONDER WHY I AM NOT SINGING.

I DON'T CARE ABOUT THAT

 BUT I DO CARE ABOUT NOT EXPRESSING ALL THE LOVE AND PASSION

I HAVE TO SHARE:

WHAT DOES NOT SPEAKING 
MEAN TO ME.

 THE BIBLE STORY

THE GREAT LOSS

 WITH THIS DISEASE, ALS

 IT CAN ATTACK

 EVERY PART OF YOUR BODY.

 BLIND, HEARING IMPAIRED, WALKING,

 EATING, SWALLOWING, BREATHING

WELL LORD THAT IS A BUNDLE.

I FELT BAD FOR PEOPLE

WHO HAD DIFFICULTY HEARING

ESPECIALLY IN SUNDAY SCHOOL AND CHURCH.

I WAS ALWAYS A PART OF AMPLIFICATION,

THEN I FELT BAD ABOUT SOMEONE WHOSE VISION WAS IN TROUBLE

CATARACTS ARE ONE THING

BUT MY MOTHER HAD

MACULAR DEGENERATION.

 I TRIED TO LEARN ALL I COULD SO I COULD HELP MY MOTHER.

I SUFFERED A BROKEN ANKLE AND ROTATOR CUFF SURGERY

IT TOOK A YEAR  FOR ME TO RECOVER BUT I COULD RECOVER

 IN PHYSICAL  THERAPY

I SAW KNEE AND HIP REPLACEMENTS AND STROKES

 ALL COULD GET WELL

 THAT IS THE DIFFERENCE OF MS

 YOU DEAL WITH IT FOR A LONG DEGENERATIVE TIME

I HAVE ALWAYS BEEN MADE CONSCIOUS OF THE NEEDS OF OTHERS

 "NEIGHBORHOOD FRIENDS CARE"  

IS TO TOUCH JUST A FRACTION OF PEOPLE IN NEED.

 I JOKE: IT IS LIKE HELPING SOMEONE CHANGE A LIGHT BULB

THIS BLOG ALWAYS TAKES ME IN CIRCLES

 THE DIFFERENCE IS AN AILMENT OR AN AFFLICTION.

 I WILL SAY AN AILMENT GETS BETTER

 AN AFFLICTION YOU LIVE WITH

 
 WHAT CLASS DOES ALS FALL INTO.

  YOU REALLY DON'T DEGENERATE

YOU INCINERATE

 PUFF IT IS GONE FOREVER

 TODAY MY VOICE

 I GO DOWN THE HALL AND PEOPLE SAY HI

 I CAN WAVE

 I WANT TO SAY THANK YOU

 I DO THUMBS UP

 I CAN'T SAY A WORD

 I HAVE GOOD IDEAS,

BEAUTY TO SHARE WITH PEOPLE

 YOU MADE SO CONSCIOUS OF THE NEEDS OF OTHERS

 AND THEN  I AM SHUT UP

 I KNOW LORD YOU DID NOT CAUSE THIS

 BUT IT IS SO PAINFUL

 WHEN I POINT,

KNOW ONE UNDERSTANDS IT

IS LIKE BEING IN A CONSTANT

PANTOMIME

LORD HOW TO MAKE SENSE OF THIS

 I LOVE SO MUCH AND HAVE SO MUCH TO SHARE WITH OTHERS.

 WHY IS THAT SOMEONE WHO CAN SPEW HATE

CAN LIVE AND BE ABUNDANTLY FRUITFUL,

IF THAT IS WHAT YOU CALL IT  

WHY DO THOSE OF US WHO TRY TO WORK FOR OTHERS

   GETS KICKED IN THE KNEES

 I HAVE CHALLENGED YOU TO MAKE SENSE 

 OF THIS LORD.

I CAN  NOT SAY IT IS A GIFT

 I SAY,

"I WANT TO RETURN THE GIFT AT THE COUNTER"

NO SUCH LUCK 

 YOU DON'T TAKE RETURNS. 

WHEN PEOPLE ARE INPATIENT 

 WITH WHAT THEY GO THROUGH DRIVING AND SHOPPING IN LINES

I SAY, " TRY THIS ON FOR PERMANENT"

NEVER BEING ABLE TO SPEAK.

 IT IS GONE NADA

IT IS SO UNBELIEVABLY PAINFUL

 I JUST WANT TO HUG EVERYBODY AND SAY 

 I AM STILL HERE!

 I AM STILL HERE!

I DO KNOW WHAT

LORD  I NEED YOU MORE THAN EVER

YOU ARE ALWAYS WITH ME 

AND

I DO KNOW WE ARE

 ALLOWED TO LEAN ON YOU

 WELL THANK YOU FOR CARRYING ME THIS LAST WEEK

 PLEASE GIVE ME THE STRENGTH

 TO CLIMB THIS MOUNTAIN

MY LOVED ONES HAVE SEEN ME STRUGGLING FOR EVERY BREATH

AND SEEN ME 
NEED HELP TO GET FROM A-Z

 THIS DISEASE AFFECTS EVERY PART OF YOUR BEING

OXYGEN AND A FEED TUBE SUSTAIN ME

  

BUT YOU ALONE ARE SUFFICIENT FOR OUR NEEDS

A FEW OF MY ALS FRIENDS ARE 

  IN THE HOSPITAL IN
ICU

 NOW

THANK YOU FOR HELPING ME BREAK OUT OF JAIL

LAST NIGHT THE DOCTORS WANTED TO PUT ME IN STEP DOWN

 BUT I SURVIVED AND SLEPT ALL NIGHT IN PEACE

 AND NOT BREATHING STRUGGLE

SO WE ARE STILL PLAYING THE GAME.

KEEP UP THE GOOD WORK

WE CLIMBED A HURDLE LAST NIGHT

AND 

 I FEEL STRONGER TODAY

YOU ARE PERFORMING MIRACLES

ALL OVER THE PLACE

PEOPLE I HAD DIFFICULT RELATIONSHIPS 

HAVE MELTED IN TO TRUE LOVE.

YOU BUILD BRIDGES WHERE

WE HUMANS FEAR TO TREAD.

YOU HAVE MADE MY DREAMS COME TRUE

RIGHT BEFORE SURGERY

 MY SISTER BARBARA AND CONNIE

   

GAVE ME A BEAD PARTY

SOME OF MY FRIENDS WERE THERE

IF I HAD MY WAY 50 PEOPLE 

WOULD HAVE BEEN THERE.

 IT HAS BEEN MY DREAM FOR YEARS!

FRIENDS AND FAMILY 

 SHARING TIME AND PICKING OUT THEIR OWN BEADS

AND MAKING A NECKLACE. 

 I GAVE THEM EACH A BEAD TO PUT ON THEIR NECKLACE

 TO REMEMBER ME,

 BUT MORE THAN THAT

 TO SHARE SOMETHING OF BEAUTY WITH FRIENDS.

THE MOST IMPORTANT BEAUTY IS

 TIME 

MORE IMPORTANT THAN ANYTHING.

THE BEAD PARTY CAME JUST IN TIME. 

 YOU SEE LORD I HAVE CONSENTED TO NOT GO HOME. 

I AM GOING TO A REHAB

PROBABLY THAT DREADED NURSING HOME

BUT GOD 

THIS IS YOUR BIGGEST TASK

 PLEASE GET ME HOME

ONE MORE TIME.

I PROMISE I WILL SORT OF BEHAVE

THEY ARE AFRAID I NEED HELP AT HOME

 AND WON'T HAVE ENOUGH VOLUNTEERS

SOCIAL SERVICES IS TRYING TO 

GET A GRANT PROGRAM TO HELP!

  PLEASE LORD THIS IS A BIG MIRACLE

I KNOW, BUT YOU SAY

ALL YOU HAVE TO DO IS ASK IN MY NAME 

AND IT WILL BE DONE FOR YOU.

DEAR LORD 

 I AM HOLDING YOU TO IT.

 YOU KNOW LORD I LIVE ALONE

LET  ME BE A TESTAMENT 

 TO ALL THOSE WHO LIVE ALONE

 THAT,

IF THEY GET A TERRIBLE DISEASE

 YOU WILL BE THERE

YOU ALONE CAN ORCHESTRATE

 A BEAUTIFUL ENDING TO ANY LIFE

 IF NOT LORD 

 PLEASE HELP MY LIFE AND DEATH

MEAN SOMETHING

 SO THAT OTHERS CAN SEE HOW REAL YOU ARE

 ISN'T IT JUST LIKE US HUMAN

 TO WANT OUR CAKE AND EAT IT TOO.

THANK YOU LORD 

 FOR MAKING MY ROAD STRAIGHT

.