Rain

rain falling gently now

I do not sleep

Freddie said “I love to hear the rain” and I said “I do too.”

To walk through his house again to smell the smell of his house and the redwood trees to visualize him pushing his walker down the hall stopping briefly at the living room door where I slept on the couch to say “Mom I am sorry about the things I said last night.” and I would answer “I am sorry as well for my behavior. I love you.” and he would go into the kitchen to make his breakfast or take his medicine.

To see him feed his worms; work in his tomato pots on the gorgeous deck, in the sun; eat watermelon with his friend, Ron, who came for an hour each Wednesday. He did not have many visitors dropping by because of his illness.

I wish I had not said “Stop playing with your phone and try to sleep”

The phone was his connection to the world; I should have known because it was my connection to the world as well, then as now. Oh, that hind sight could be zero and present sight could be 20/20.

to hear him call me during the night “Mom, I am going to be sick”

to hold the basin and clean it after he vomited

to pull up the syringes for him even though I simple could not bring myself to give him the shot, rescue shot, in the abdomen. I wish I could have but it hurt me to much to think about it. My fear of hurting him. He hated giving himself the shop but he needed it to live.

i could have learned on an orange.

I must tell all the stories before I forget.  I have to write my way through this if I am going to live.

give me strength not to scream

Freddie was a handicapped child from birth. That is an established fact. Did we treat him as such? No. He was treated as if he were normal, whatever that means. Did this comfort me that I had been singled out by a God who thought I had special strength to bear this burden? I did not feel privileged; neither did I understand why God had chosen me for this task. Every year thousands of families have children born with a handicap…I wonder if they understand why and feel privileged.

Freddie was bullied in school yet he rose above that and became more than the bullies would ever become. He made a choice to live his life in a way that set him apart from not only his family but also his friends. I doubt anyone truly understood him, his talents, his moods and his depression. I did not, however I did accept and love him unconditionally. So many days now I have tried to live my life backward to try to unlock the mystery called Freddie.

Well meaning persons have said to me things like I know this is painful for you but you will get through it because God never sends more than you can bear. He knows your strength; and my mind is inwardly screaming.: If only I were a weaker person Freddie would still be alive.

Perhaps there is another view or another question that needs to be asked. Take God out of the equation. Intellectually we know that we all die. We all want to believe that there is a better place, another world where all suffering and pain ends and we are made whole again. Is there a world like this? We hope so, but there is no living person who knows the absolute reality of this hope and where this other world is. Perhaps it is in another galaxy. Perhaps it is in the air around us, a flower, a butterfly, a cardinal, an Alaskan Husky.

Here is what we do know. The physical body dies and decays after death. I believe that each of us have a unique soul that is not a physical part of us and cannot die. What does this soul look like? I do not know. Do they look like our loved ones? I do not know. Will we recognize each other? Will we be the same age? Where are all these souls? Do they just hangout waiting for the resurrection or do they go immediately to heaven? And where is heaven?

I want to ask Delta if I can purchase a ticket to Heaven. I have not finished my conversations with Freddie

God does not cause all these bad things to happen to us nor does he single us out. I think he stands ready to help us cope but first we have to move beyond all the anger, guilt and rage before He can help us. We have to stop asking “Why, God, did you do this to my beloved son? How could you be so cruel?”

I will keep reading. Meditating. Talking to the universe. Hugging trees. Planting flowers. Watching cardinals and butterflies. Watching for the white feathers as signs that angels are near and maybe one day I can live among the world of people again. I do not know. I have not decided or chosen a path as yet.

ars moriendi

The Art of Dying was simple at one time, in the long history of man. You were born, you lived, you died and this was the accepted course of your life. Medical doctors were sparse and medications were few. Solutions were not readily available foe whatever might ail you. Granted some people did not live long lives, however, their lives were lived within the family unit and their life had purpose until the end. Was there fear? yes. Was there pain? yes, however, most were stoic in managing to keep their pain to themselves to “spare” their loved ones.

In the medieval version, which was published in Latin, people thought death “should be accepted stoically, without fear of-or self-pity or hope for anything more.” Other matters to attend to were asking God for forgiveness, reaffirming one’s faith, repenting one’s sins and letting go of one’s worldly possessions and desires were crucial. The families were advised to pray and to ask questions of the dying so that they would be in the right frame of mind when death arrived. Last words, according to The Art of Dying, were precious and were words of reverence to hold in the sacred places of your heart.

Is this the way we approach death today? No. The main prescription, when given a diagnosis of a terminal illness, is lots of options with the main one being Hope. Doctors Hope that one of the options will extend your life and many have extended lives for years, however the end is always the same The years left after a terminal diagnosis could be better charted, in my opinion, if the patient were asked certain questions by a very sensitive, experienced person in hospice care. The questions to be answered by the patient, according to Dr. Gould as written in Being Mortal by Atul Gawande are:

  1. Do you want to be resuscitated?
  2. Do you want aggressive treatments such as intubation and mechanical ventilation?
  3. Do you want antibiotics?
  4. Do you want tube or intravenous feeding if you can’t eat on your own?

Having an advanced directive makes it easier for everyone, even though having one does not mean that Hope has been abandoned. Yet, without the answers to these questions the family may not know what you would want for your life and chaos can cost minutes of time that could have been spent saying “I love you” and saying goodbye.

There are so many differing opinions on this subject and so much information “out there” that it is difficult to plow through the research and find what will work for you. Yet, in the end, after all the clinical trials, the “options”, when they all run out, will you ask yourself if the quantity of time you spent with your loved one and the pain endured was worth all the “options” pursued or would you rather have spent quality time at the end and lived each minute in the moment?

Turning the page

The page turns and the pencil begins to write the last chapter. There are more pages written than there are to be written. Time has dwindled down to a few pages and writing those pages will not be an easy task.

What should be written on those pages? poetry? a book? thoughts? songs? wishes? hopes? dreams lost? So many choices. How will the holder of the pencil choose? Will the Universe be kind?

Life began to end at birth and the pencil began to write on the blank pages. The good, the not so good. Choices made; missed opportunities. Life is one long road traveled and for everyone the ending is the same: death. It is when the last pages are being written that the review begins and life winds down to end with no breath left and as one book states: “When Breath becomes Air”… and time is up.

Many seem to lead charmed lives. Others wonder why “bad things happen to good people”, once again a title of another book, however, it does shed some light on the why’s. There was no one there to try to answer that question without quoting God and God had nothing to do with any of this. It all happened, both good and bad because of choices made. Sometimes God wept. “Being Mortal” means both joy and suffering. It is how suffering is handled that shapes our being and shines light on how that life was lived.

So, the page is slowing turning; turning to write the last chapter. The pencil is sharpened, the road is clear; the end is near.

The bits and pieces of life, as usual, will be left…the bits and pieces now without meaning.

2017 Reviews

I do not know about you but I am very tired of having every news outlet review 2017.

I lived it. Every, Every moment. I do not need the talking heads to tell me what I lived or did not live, mainly because I did not live in their world nor would I want to live in that world.

Stop. Just please stop and reflect on your own place in time; your own life; and what it means to live in the present.

I should know; I lived in the past for a year; a year I reviewed on FB and WP. The year is over. I do not need to review it anymore.

I lived it.

Unfinished thoughts

Two thousand and seventeen came in unnoticed. Two thousand and sixteen had slipped away unnoticed.  Life and living seemed a burden. My son had died wanting desperately to live.  What was left?

Anger at a God whom had created an imperfect world. He knew that choices and perspectives would shape the world we lived in. The choices we made shaped who we were and who our children would be. An imperfect sperm paired with a less than perfect egg created a child who was born with a birth defect. Not of God’s making; nature has a way of maintaining an imperfect Universe; a Universe  we make from choices.

God and the Universe watched. What would the perspective be of the life of this child.

This is my thought as I continue my journey. I do not want to write anymore about this today; maybe tomorrow, if I wake.