Up & Down & Around We Go.......

The ups and downs of this disease is quite trying on one particular care giver.... Yes... me.  I get close to saying "I CAN"T DO IT ANYMORE!

Then Gods says... yes you can!   I say I don't want to.... God says you have to... I chose YOU because this is the job I readied you for.... Tom is a difficult child but he is a child of mine and I need you to see him through this.....

Yesterday I went for a walk in the woods because I had reached a point ...... one in which I needed to walk away...... Tom seen me leave... and I left the girls in the house as I really needed to be alone.... 

I returned three hours later to a hysterical TOM who had rounded up a posse to go in search of me.....

This is the conversation between my daughter and me the next morning.... texting.

U ok?....... YUP!  : )........ Tom freaked out:-§....... I know....... Its hard 2 escape 4 awhile when u r on a short chain!......... Yupppp!!!!!........ Remember when i tried 2 put dusty (cat) on a string?.......... No.. how did that turn out?.......... Gag! Choke! Gasp! Cough! The more she pulled the tighter it got. She looked epileptic. Never did that again!......... ha ha ha...Toms awake... gotta go.

My 9 year old Granddaughter called..... "Gramma are you okay?'......."I'm fine sweetie"......."where did you go?"....  just for a walk in the woods"..... "You scared Grampa really really bad.".... "I know, I didn't mean too"..... "you shouldn't do that, he was really scared."

Tom suffered ultimately for the emotional turmoil I put him through... though unintentional I feel bad.....  especially after I heard his interpretation of what took place.....  It didn't match mine.

Tom trusts me like a parent / child relationship....... To him I am a ROCK... I know all and can do anything, in his mind.   I am someone with strong sound morals.... will give my all to protect my children (him & the girls ) and he loves and trust his MOM like any small child would.   This is our emotional relationship...

In reality Tom  knows I'm his wife, the love of his life, soul mate...... but mentally he can't function as a husband, the other half of us....... so we slowly worked into this Mom / child relationship adding the girls as more kids...... this works for us.  We live in the woods and interact with others when and with whom we choose?

Tom suffers from unbearable pains that SHOOT through a specific part of his leg like lightening bolts...... every few minutes one shoots through crippling him...  After YEARS of trying to find the cause / source...... it appears it's triggered in the brain.   Is STRESS / FEAR  the trigger?

By now you should be able to put together the rest of the story....... The specifics are not important....

I just can't stop thinking about what a long, slow, destructive, life changing, cruel, unfair, tormenting, gut wrenching, heart breaking, lonely disease this is.......  am I going to make it?