I AM SECURELY WITH MY SON

HELLO GOD  

  

 I HAVE BEEN SLEEPING MOST OF THE DAY

AND MY FAMILY GOT HOME FROM WORK!

 HOW WONDERFUL TO BE SHARING TIME WITH THEM 

WHEN 

  

 I AM STILL MOBILE,

 AND WALKING ON MY OWN. 

RICH

 HAS BEEN ATTENDING

 AN ALS SUPPORT GROUP FOR CAREGIVERS. 

 HE WANTS TO BE THERE FOR ME. 

 HE WANTS ME TO DO WHAT I CAN

 TO FULFILL MY VISION

 OF 

 NFC.

HE IS BEHIND ME 100%

 HE HAS A PHILOSOPHY

THAT MAKES ME FEEL GOOD!!!

  

 GOD SENT ME 

THREE

OF THE MOST WONDERFUL SONS

RICH, BRENT AND GREG

ALL OF WHICH ARE BEHIND ME 

 100%  

  

 IT IS DIFFICULT TO BE TOLD YOU HAVE A TERMINAL ILLNESS.

  

 IT IS EVEN MORE DIFFICULT TO KNOW YOU HAVE TO DEAL WITH 

TODAY IS WHAT YOU HAVE TO ACCEPT AND DEAL WITH.

 BUT EVEN MORE DIFFICULT IS TO KNOW THAT

 IT WILL GET WORSE TODAY, TOMORROW OR THE NEXT DAY.

  THE LIGHT IS THAT 

THERE ARE THINGS 

INVENTED TO HELP ME WITH

MY INDEPENDENCE!!!

RICH IS SHOCKED THAT

PEOPLE ARE SO READY TO GIVE UP ON ME AND MY LIFE.

 ALL MY SONS ARE GETTING EDUCATED ON ALS.

 I APPRECIATE THAT.

 I HAVE HEARD A LOT

ABOUT OTHER FAMILIES 

FACING THIS DISEASE OF ALS

RICH SAYS HE WILL SUPPORT ME IN WHAT I WANT,

 AND IS HELPING ME TO FIND OUT

WHAT THAT WILL BE.

HE MAKES ME FEEL SAFE

  

 AND HELPS ME FACE THE WORLD!

IT IS DIFFICULT TO FACE FAMILY AND FRIENDS

 IT IS EVEN MORE DIFFICULT 

TO DEFEND MY POSITION 

ON WHAT I FEEL ABOUT THINGS.

I AM WORRIED ABOUT GOING HOME

THAT I WILL HAVE TO DEFEND EVERYTHING I DO.

THAT IS DIFFICULT WHEN

I DON'T KNOW 

AND 

DON'T  HAVE A VOICE TO EXPLAIN MYSELF.

I AM SEARCHING FOR MY WAY IN THE DARKNESS 

GOD

THIS DISEASE IS THE DARKNESS

 I HAVE NOT SEEN THE LIGHT.

 I KNOW YOUR TIME IS THE BEST TIME

 BUT  

 LORD 

 PEOPLE DON'T WANT ME TO WAIT ON YOU LORD.

THEY WANT ME TO HURRY UP AND MAKE UP MY MIND ON EVERYTHING.

IT IS DIFFICULT TO FACE THIS

 AND I AM HAVING A DIFFICULT TIME GIVING UP MY INDEPENDENCE.

 GOD,
I USED TO DRIVE MY SELF EVERY WHERE.

 I COULD GO AND DO WHAT EVER I WANTED.

 NOW I HAVE GIVEN UP MY CAR 

AND 

 HAVE TO HAVE A REASON TO GET OUT AND GO.

 IT HAS TO BE AN APPOINTMENT 

OR A GOOD ENOUGH REASON 

TO TROUBLE PEOPLE TO TAKE ME.

THEN I MAY NEED A WHEEL CHAIR

 OH MY GOD

 WHAT IF PEOPLE CAN'T HANDLE IT!

WHAT IF  I CAN'T HANDLE IT!

 THIS IS COMPLETING 2 MONTHS

SINCE I WAS DIAGNOSED.

MY LIFE HAS CHANGED 

180 DEGREES

OR

EVEN 360 DEGREES

WHEN SOMEONE HAS A VICE

AND THEY TAKE YEARS TO FACE 

AND MAY NEVER FACE THEIR ADDICTION.

THAT IS A CHOICE.

 IF I HAD A CHOICE

I WOULD CURE THIS DISEASE IN A MINUTE 

SO NO ONE WOULD HAVE TO GO THROUGH THIS.

ALS IS AN AWFUL DISEASE 

LIKE MANY OTHER DISEASES 

I KNOW 

I TOOK CARE OF MY PARENTS WITH THEIR DISEASES.

AND THAT WAS DIFFICULT BUT MEANINGFUL.

 IT TAUGHT ME MANY LESSONS.

 GOD,
I DON'T WANT TO TEACH OTHERS
AND
MY FAMILY MEANINGFUL LESSONS.

I DON'T WANT MY FAMILY AND FRIENDS TO GO THROUGH THIS.

I COULD DEAL WITH DEATH,

IT IS THE LIVING,

I AM HAVING TROUBLE WITH.

GOD PLEASE,
I DON'T WANT TO BE A BURDEN

 I JUST WANT TO TAKE CARE OF MY OWN SHIT!

WHY IS THIS SUCH A STRUGGLE. 

 I CAN'T SLEEP BECAUSE I FEAR I WILL LEAVE SOMETHING UNDONE.

I NEED MORE TIME LORD

EVEN IF I HAVE MORE TIME

I THINK I AM SAYING 

I NEED MY INDEPENDENCE BACK

I GUESS I WANT TO BE WELL.

 I DON'T LIKE TO SEE THE PAIN IN OTHERS EYES ABOUT ME.

I HAVE ALWAYS BEEN ABOUT BRINGING JOY AND PEACE TO OTHERS

THIS IS MIXED UP 

 I CAN'T TAKE THIS.

I DON'T WANT TO BE A BURDEN 

 REALLY LORD