August 18. 2016. 8:18 PM


Aug 18, 2016, 8:18 PM
to Dennis, ilsi
Dennis and Kathy,

Writing from my chair in the dialysis waiting room. This has been a sad day but at least we had this day to live.

I can only write from a mother’s perspective. I have lived this story for 54 years, doctors called me crazy and yet I never gave up. Guess Fred is like his Mom.
I am sending to Kathy through Dan. She can help clean this up maybe to something that makes sense.
Fred and JW have been exchanging text messages so that story is coming alone.
Wish I were more help.
Fred was born on July 4, 1962. He cried a lot and his diapers were never wet. His paternal Aunt and Grandmother said he was just fine. I knew he was not.

At two a pediatrician, by accident, found that he had a blockage in his penis so from a routine checkup we ended up in the hospital for the next three weeks. He went from looking like a third world starving child to a normal looking young lad. His urine drained into a bag tied to the side of his left leg drainage from a superpubic tube. He was given a year to live. The year passed with every other week doctor visit to change the Cather.
At three, he had an 8 hour surgery performed by a children’s Doctor fresh from Boston Children’s Hospital. He took out the urethral tubes, split them and made them smaller and then reinserted them making new flaps to the bladder; removed more blockages in the penis and made a new flap from the bladder to the penis; inserted tubes from the kidneys directly outside for the urine to flow and said if he lives for 48 hours he might live five years but certainly not a normal life span.
And here we are…at 54 he is now diagnosed as terminally ill with neuroendocrine cancer of the midgut, on dialysis and hoping for a transplant of liver and kidneys.
In between being born and now he did amazing things in high school, not in sports because he was not allowed to play contact sports, so being extremely gifted, he hung with the nerds, went to college, taught in college, held responsible positions, started his own company and then Silicon, CA went down into the Pacific Ocean taking his company with it. He then entered the GLXP even after being diagnosed with cancer in 2010 for certain but tentative problems began in 2004. He wanted to work, still does. He never told them or me he had cancer. He fought for what was right in a rigged contest.
Freddie is an extraordinary person with a strong will to live because he has much more to give. Never having one well day in his life, he never asked the government for help even when he was eligible. Now he is being denied SSDI and everything else, his wife walked out and he has no source of income and too much pride to ask for help.
We are far from wealthy so I ask a friend of a friend of mine to help. Sometimes angels come from unusual places. He is a “good guy” and I hope that you will help Fred find the funds for his double transplant. Let us have one more miracle for Fred!

What is your film?

“Life is your art. An open, aware heart is your camera. A oneness with your world is your film. Your bright eyes, your easy smile is your museum.”

— Ansel Adams

In reading this quote, I am reminded of days of old when we actually all used film in our camera to take pictures to document a moment in time. Now I use my iPhone to take millions of pictures and videos. I miss the days when I would take the film out, mail it off in the envelope provided by the company and then wait, what seemed like forever, for the photos and the negatives to arrive in the mail back to me. Thank you to my Mother and Father for giving me that first camera. I do not know what kind of camera they used or my grandparents but I seem to have lots and lots of Photos, in albums, boxes, bins and thousands on my iPhone, photo stick, external hard drives and USB sticks.
These photos are my window to the past and to those moments I wished to remember forever. When my Lenovo crashed recently and I had to purchase a new computer, I was terrified that the photos on the computer only, might be forever gone. The hard drive had nothing on it. We thought perhaps lightning had destroyed everything and it had. Lucky for me, I had a Passport backup and had recently backed it up and I was able to use that to put back on this new HP what had been backed up. I lost a lot of things I had written through the years and never shared anywhere but that was the least of my worries. I probably was never going to share them. I had recently told my daughter she could publish them if she thought they were good enough.
Rejection of my writing was too personal to me. As a person I can take rejection; of my writing, I cannot because it is the “oneness with my world” where rejection would devastate me. I have never been good enough to be read, so I thought. This may be true and yet I choose not to find out.
Today I watched as the sky turned silvery gray. Rain would fall soon, dreamily on the roof and the stark, lonely trees. There were no birds calling to each other. I miss them.
I did decide that I would put out the feeders again. If I place the feeder close to the one lonely maple tree so old now, it would be protection from the hawk. It could not swoop easily under the canopy. The smaller trees in the yard would not give much protection.

I see my oneness with the world through the eyes of the camera and the film is unwinding in my soul to tell the stories of the moments of my life to those who watch and listen.

What is your life? Your camera? Your film? Your museum?

The Day After

It is the day after CHRISTMAS and all seems quiet. It is as if I am floating between earth and sky with only a silver thread tethering me to earth. I miss the birds. The question is: Do I feed them and endanger their lives? The red wing, red tip tail hawk keeps checking the yard for food. I choose to not feed loving both the birds and the hawk. As I ponder this question of nature, survival and all the invisible threads I cannot see, I wonder if I am denying myself the joy of watching the birds feed and maybe loosing a few because the hawk is hungry, too? Just a thought.
Two gray doves sat on the gate and stared at the space in between us, a space I could not close, it seemed that they, too, are wondering what to do about the absence of food always found on the ground under the feeders. Even the feeders sit empty on the shelf. Clean, ready but empty.
As a recluse, I often wonder what other persons do the day after any holiday. Put away decorations? clean the house? before and after cleaning seems useless to me. I think cleaning after would be easier but remembering back I did both.
We rarely think of AD/BC. I dare say it has gone out of vogue to even think there was a Christ whom God sent to earth to die for us and our sins. We think more of soldiers who protect us and die for us just as Christ did but do we really remember?
I have a new way of thinking and remembering. BF/AF. Life changed for me as it did for all of humanity when Christ died for us. There may be lives that changed forever after Freddie died. I do not know but this is not about me and how my life changed. It is for you to decide when and how or if you ever had a life changing event where you separate your life span into a before and after. Can you identify that moment when you knew life would never be the same? You do not have to tell me but do acknowledge this event within your self.

What If?

My new year begins on December 19.

Everyone can choose when to reset their clock, their time, their year. You donot have to allow others to do that for you. You have a sense of who you are and when time begins for you. So often we just go along without questioning the logic. What if you chose something different? What would happen? Would the world stop spinning? Would the stars black out? Birds disappear? Rain fall upwards? Grass turn pink? I think not, because we are only a tiny speck in the Universe and even though God sees a sparrow fall, I think he may be the only one watching.

What if?

Can’t Think Straight

Lori's Lane

Have you ever experienced times when there is so much going on that you can’t even think straight? How about when you’re emotional about something? Have you ever been so angry your emotions took over and your mind froze? How about grief? Have you ever been deep in sadness and no thoughts mattered . . . only your grief mattered?

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The Key to No Door

I have a key

It opened the kitchen door

To my parents home

No more.

I burned the house

Built in 1940

By Daddy and Grandaddy

I will miss the house

No one could enter

Falling in from disrepair

And disrespect from one

Who was the “caretaker”

To hunt deer

No more

This is the last winter

I love the deer

He did not keep

His side of the agreement

No more.

It hurts to have a key that opens no door anymore.

The First Day of Advent

Dr. Bradfords sermon on TV today. My extrapolation of the salient points.

It is a difficult time for some of us. We are not fine and it is all right to say we hurt. The first year is not the hardest for some. This year, the third year, has been the hardest for me.

Here are the twelve points covered.

1. Expect the holidays to be difficult,

2. Be easy on yourself. It is ok to say No.

3. Do not be afraid to ask for help,

4. It is ok to enjoy yourself,

5. Draw on you faith. Tell God how you feel (this I have certainly done),

6. Be gentle with your counselors. The best thing to say, “I am praying for you.” The worst thing to say, “I know how you feel”. There is no way to know how a person feels because you are not them,

7. Do something for someone else,

8. Try not to withdraw (the hardest for me),

9. Let the past memories flood you (I have cried oceans),

10. Draw strength from your faith,

11. Visit the gravesite and talk (I live to far away to visit the gravesite but I talk to his room and photo every day; I tell him all the things I failed to tell him in life),

12. Remember that you are normal.