ellenspictures

Category: Reflections

  • the randomness of it all stream of consciousness

    the randomness of it all stream of consciousness

    good morning sunshine.  as i sit here today, it’s november 8th.  it is election day in the us.  the oracle has warned us.  we wait.  we have the predictions of the outcomes.

    we watched the tiny town of dixville notch in new hampshire, live on television, have their first live voting just after midnight in the tiny town in the tiny state.  we watched them count votes and post the results on a whiteboard.  there was one write-in for romney.  hillary won that town.  trump got two votes.  no one would admit to voting for trump for fear of embarrassment.

    i am, like roughly half of the people in the usa, a democrat.  apparently, i am a “moderate”.  that makes sense, as the extreme left of the liberal scale makes me squeamish in some ways but, the extreme right of the republicans scares the shit out of me.  this year, that extreme right is jumping out of the bounds of the republican party.  even they say so mostly in private, but some in public.  the left of the democrats are not that bad.  to me, the lake is getting ready to turn over, like after the civil war (hopefully, the only one we will have), the republicans became democrats and the democrats became republicans.  that does your head in.  my grandma told me stories about this.  my family mostly are democrats.  my grandparents were republicans, my dad was, too, but my mom was a democrat in the later years like her brother, and my cousins.

    this will be another election day.  how many for me?  let’s see. twelve it is, counting this one.  my first was voting against nixon in 1972, who i sensed was quite evil.  nixon won.  it was sad.  the results of his election were that his criminal behavior forced him to resign.  i was right.

    the next election was in 1976.  due to that bad boy nixon’s escapades, he had resigned and ford was running against carter.  i voted for carter.  he won.  carter was actually the wisest president that has ever held office, since obama, who actually is the wisest so far – but the forces of the republican party were against him and disgraced him.  interesting that he is a go-to guy these days on perspectives about world affairs.

    the next election was in 1980.  that was reagan beating the socks off of carter.  everyone loved reagan for some reason.  i didn’t.  i didn’t like his hair or his shoes.  bad hair is a bad sign.  it turns out to be true every time in politicians.  but people loved him like he was some sort of santa claus.  go figure.  i just thought he was a washed up hollywood actor.  oh well. he was in for eight years.  fading towards the last of it, he was starting to stumble.

    next was the year that bush senior won the presidency in 1988.  the next one in 1992 people were a bit freaked out by what happened under bush.  bill clinton came into office and stayed eight years – it was mixed but good for the economy – he just did not always exhibit presidential behavior – his johnson got him into trouble which i consider a personality defect.

    then came little bush.  oh my god.  the country changed as his presidency ended up dashing the economy, taking us into a war waged based on pretense, and it introduced the beginning of a marketing machine that has not stopped.  obama inherited the mess left by eight years of bush, and the audacity of the republican propaganda machine was to blame him for it!  unbelievable.  this is when the double-speak really mushroomed.

    now we have the trump vs. hillary and the incredible and outlandish behavior exhibited and licensed by trump has taken hold.  in looking at past elections, it is interesting to see how relatively close they were in certain circumstances and how certain states have more pull due to the electoral college – which makes me wonder – is it really a good thing?  i always wonder about this at this stage of the game.

    now we pray that the whole system works well.  if hillary is in, then we likely will not see drastic changes; but if trump is in – this is when we will really put the system to the test – how to deal with a president who has erratic behavior, who says one thing, then says he didn’t say it, who angrily lashes out at whole groups of people that he loved the day before, and will not be transparent about anything (even though he says he is).  what we do know is that he is a philandering, adulterer, who brags about it (at least the past ones tried to keep out of the public eye)… who allows people at his events to threaten to do illegal things (like hack, kill, or other acts of violence), and by not discouraging it, he condones the behaviors.  He unleashes the hatred, the prejudice, and the qualities that people have tried to make against the law to show in public over years of social reform.  He takes us back – he says he wants to make us great again – I don’t like his definition of great.

    now we pray.
    God help us all.  Please.

     

  • It was birds that woke me up at 3 AM, but I know now it really was not the birds…

    It was birds that woke me up at 3 AM, but I know now it really was not the birds…

    Rob passed on, eleven years ago, just before 3 AM.  I remember being at home later in the morning, with the phone starting to ring – people were learning about Rob and asking, “was it true?”  The school counselor asked, “What do I tell all of these children lined up at my door?”

    I had not slept much, once I got into my house – it was hard to know what to do.  Sleeping did not feel right, but nothing felt right.  I spent several hours waiting on dawn, after the dark drive back from the hospital in the wee hours, with all of our belongings, accumulated over the nearly six-week period over which he was hospitalized the final time.

    Clothes, a PlayStation, the utensils we kept for preparing foods and snacks, books, cards, flowers, and just precious things that he had wanted from home – all had to be loaded up in my SUV and taken away.  Suddenly.  By me.

    The Burt’s Bees anti-dandruff shampoo that was used the last time we washed Rob’s hair – I still have it in our shower.  Will I ever be able to throw it away?  Probably not.  When will I ever be able to open the plastic containers and give away the clothes?  I probably will not.   It is too much to face, and too hard to do that.

    As I have likely written before, what went missing was Rob’s “comforter” that was with him, nearly from birth, constantly through every time he was anywhere where he needed comfort and familiarity.  Although it sounds strange for a 17 year old boy to have such a thing, his friends were amazingly tolerant of his having this and never teased him.  He named it “Shred” because it had become shredded over time.  Although, we urgently asked for staff to search, they came up with nothing.  I think it went with him when he left.

    On that dark drive back, I was in shock, but very aware of the darkness that I felt, both inside and experiencing in a sensory way as I drove back to our house.  My mind was going from fast to slow motion.  I was so numb that I could not cry or feel.  Yet, I knew that I was feeling something at some level.  I was feeling a hole coming on.  I was not quite sure yet, but I suspected that the hole would be large and that I had to be careful not to fall into it.

    The focus of most of my daily efforts had been Rob, for nearly eighteen years – that is nearly two decades of effort that fluctuated from intense to minimal like a sine curve, in the end, being the most intense with having experiences that many people cannot imagine.  Towards the end, I was essentially living in a hospital immersed in daily dramas – hopes and despair – anticipation for news of improvement, shock and sadness at news of there being little hope at all.

    As I sat waiting during his last surgery, I remember the news that the surgeon presented to us, after it was over – “We are in unprecedented territory, here.”  I replied to him about Rob’s state, “We can’t abandon hope – if we do, he has nothing to keep him going…”  It was in the days after this that Rob began to change from how he was before that surgery in ways that puzzled us.  I look back and think that Rob was beginning to shut down and prepare to let go of life on earth.

    Little did any of us know, except maybe Rob, himself.  Now I understand more about approaching death and recognize that he was showing the signs of preparing.

    I only wish that we had been discouraged from that last very painful surgery from which he never healed.  He shut down after that – initially, he was screaming with pain, afterwards, then he later went into a listless state, then he began sleeping all the time, and finally, with the episode of cardiac failure, it was time – he had reached his event horizon.

    DSC_0384

    Today, as I move through the eleventh anniversary of when Rob received his wings, I will try to summon up hope and reflect that he is now where the pain of his final condition is no longer troubling him – and that he is pure light without the burden of his body that worked only as well as it could, with great efforts to help it function despite the full scale warfare that Cystic Fibrosis wages every day on its host.

    CF is inherited, it is inherent, it is indigenous, it is ubiquitous within the person whose genes are broken – it is just there, no matter what.  Beyond a genetic transplant, holistically changing the person who has it, it is there to be .  It is there  to do battle with – to try to ignore – to try not to feel sad about – to try not to resent – to try to not regard as a burden – to try to live despite of – it is how we survived through the time, managing to a normal that we could handle. Especially Rob could not handle every day being a crisis.  We created the standards that were slightly different only at the times when they had to be.

    CF, like other genetic diseases, I suppose, has been around since the dawn of the variant of the homo sapiens when it first emerged, whenever that was.

    In researching our family – I feel that I can see certain infant deaths more prevalent in certain lines, which gives me indication as to where it traveled.  What is the point?  I suppose the point is to understand and to let it go.  This is the hard work – letting go.

    From the early days in Rob’s childhood, he loved having friends.  He had many throughout his life.  His friends accepted Rob for who he was.  He had good relationships and bad ones, and we hope that no one’s reasons for being friends with him were that they felt sorry for him.  That he could not abide.  He was strongly insisted that he would not be a pitied person.  Ever.

    So much could have been better for Rob in his life.  One parent who remains nameless, hurt rather than helped, reacted rather than truly being a supportive and responsible adult.  This made things harder at every juncture.  Acting like a child, when Rob was more acting like an adult – introducing tension into situations that needed to be diffused…

    This major person in Rob’s life who didn’t even respond to a phone call, the night that Rob was going in for transplant until someone came and banged on his door in the middle of the night – at nearly 3 AM…

    Forgive?  That’s hard.  Forbear?  Maybe.  Let go?  I have to do this at some point, but the feelings of anger and regret – those still come back up even if I think that I have let them go.  They are big and old, and they have duration of occurrences over years – sine curves and cross-plots – multiple variables – and they branch and fork and extend into more that are difficult to untangle.  As my Mom used to say, “What a mess.”

    But, it is hard, as letting go might take a little longer than eleven years, when it was almost 18 years in the making.  I cannot let anyone off the hook too soon – too much damage was done.  But I can forbear.  I can say that it was what it was.  I can pray that Rob has forgiven everyone who wronged him, including me, because I know that I probably was frustrated at times and did not know what to do, so I said things and did things as I reacted.  I am as imperfect as they come.  One of God’s children wandering in the wilderness, waiting to be redeemed.

    Let’s just say that we live, and we learn, and we strive to be better – and this is hard work for lots of us – every day.

    Maybe this is the year that I can work harder at letting go.  Maybe…

    One thing is for sure, I miss you, Rob, and all of what we might have had. Right now, especially…  In thinking about you, I still learn a lot of stuff.  I still realize how well you lived your life despite what you were given at the beginning.  I am very proud of you and always will be.  

    Love you… Always and forever.  

    -Mom
    September 20, 2016

  • It is that time of the year. To reflect. To understand more. To learn.

    It is that time of the year. To reflect. To understand more. To learn.

    Since 2005, each year, from May 24 through September 20, I feel the time coming well ahead of when it does finally begin.

    In that year, in that time frame, much happened.  The events were compressed and highly charged with life changing impact, and the resulting reactions and emotions that occurred caused a ripple effect that has been multi-faceted, branching, and will likely last a lifetime.

    I have dreams that indicate that there are remnants of this within my mind and soul.  I wonder if there is communication occurring, not from here on this earth, but from that place where souls go – heaven, hopefully – and the nature of the dream is comforting – but with as little as we know, the scientists like to say it is chemical.

    GLASSESI ask, “why then, does it take this form?”  And many of them who have been stumped do finally acknowledge that there is something to this missing link that we may be designed to never be able to grasp…  It does not matter.  It is existential and experiential and bottom line, it keeps me wondering.

    I am hopeful that it does mean that someday, I will be able to be less distant, and I will be able to pick up with the relationships with those who are no longer on this earth with us.  The closeness of our souls, the genetic connections, and so much that we believe, that we have faith that will be, is within ourselves.

    Now that I am a grandmother, I wish that I could impress how important those tiny moments of relationship and connection should not be taken for granted.

    My Grandmother – 1985.

    Mom and Geegawk, my grandmother EllenWhen I was cooking a large Thanksgiving meal, and told my Mom to tell my Grandmother I would call her back – and I did not – then a couple of days later, got the call from my Aunt that my grandmother had passed away – I was wracked with guilt forevermore that I did not get to have that conversation with her or see her again.  But when is that last conversation?  You don’t know.

     

     

    My Dad – 2000.

    When my Dad always said to me, “You should come up and see us more.”, I knew later that he knew that his time was coming.  His health problems imposed that his “use-by date” would be within a predetermined time frame.  We, unfortunately, took it for granted that since he was not in a hospital or bed-ridden, he was still around, so would be around.  No, that is not how it Sonny-1999was.

    As he became critically ill, having one event that put him into the hospital – he thereafter then went in and out of comatose states.  Being on a ventilator, he was less able to communicate with us, but at least was able to get out final messages to those of us – those he felt were most critical.  He held on for a long time, but was eventually overtaken by his failing organs and their inability to keep him alive.

    We could not be with him when he passed away due to visiting hours limitations, and the staff at that facility were apparently amenable to calling us in the middle of the night when they felt he was near death.  I regret to this day that this was the situation.  The “American Way” we treat people is by and large deplorable.  He was on a ventilator, therefore we could never bring him home to pass away on his own terms, in peace and dignity.

     

    Rob – 2005.

    The day I drove back to trade shifts with Rob’s dad, to do laundry, and to go out to give celebration for Will’s birthday, which he well deserved, I did not know that he would be gone within 48 hours.  I did not understand when I left that evening, when he said to me “Mom, I want you to be with me when I die…”, that he knew.  This has haunted me ever since.  He knew.  He was trying to tell me what was impending.  He was so smart, and so analytical, and intuitive – he knew.  His brain function never diminished.  I also believe that he had one foot in this life and one foot in the next.

    I was spared watching the cataclysmic events as he reached his “event horizon”.  But, I was not spared of the graceful departure that a handful of us witnessed – this will be with me for the rest of my days.

    After getting the call from Rob’s dad, that he had gone into cardiac arrest, but had been resuscitated, but was still unconscious, I drove like a mad woman as fast as I could to get down to the hospital to be by his bedside, hoping that I would have an opportunity to speak with my son again.  We learned that he was in a state where blood chemistry indicated that he might never wake-up or survive off of life support, and if he remained there, there was not enough left to sustain him beyond being in a vegetative state on life support.

    As Rob had many times expressed outrage over Terry Schaivo’s being left on life support by her parents, beyond the advice of everyone, to the degree that it had reached the lawsuits and Supreme Court, I did not dare entertain that he would approve of being in that state.

    Shocked, saddened, gutted – we knew that we had to make the hardest and worst decision of our lives.  I knew that I would forever be saying to myself, “What if?”

    But, I prayed that God was guiding me to do what was best for Rob’s soul and state of being.  The humans had been trying for over 17 years to keep him alive and well, and the humans had failed miserably.  God took over.  I could rest with that.  I think that everyone understood this.

    My Aunt – 2007.

    Dorothy's 80th in her new hat

    In October of 2006, after spending time with my Aunt and Cousin at what would have been my Dad’s 66th high school reunion, I learned that my Aunt had some issues that later within a few months became diagnosed as terminal.  She was always such a great role model and friend, having lived her life differently, and of her own choosing – we had celebrated with her, her 80th, two years prior, in a surprise trip that her grandchildren and children designed for commemorating a life well lived of a person well loved. 

    In the following spring, we got the call that it was time to come out to her and spend some time with her, as she was in serious decline.  We did and for this I was glad.  We were called again to come see her in her last days.  Again, I was extremely grateful to my family for recognizing that this was essential.  Many of us who were there for her 80th were there for this time, as well.  The lesson is that she was recognized and well-loved and priority was made that she would know this before she passed away.

    The sad part is that two of her sons did not show up.  One had been estranged years earlier, separated from the family, and lost for a period, never to return.  Heartbreaking to my Aunt and Uncle.  The other, for whatever reason did not return before her death.  We have only to wonder why.  The lesson here is that there are still some people who do not understand that this is a part of life that modern life has removed – and it should be observed and restored – that being with those who are preparing to depart to exchange the love and any forgiveness ahead of the journey.

    Sadie – 2008.

    sadies-walkIn September of 2008, on September 17th, after we returned to our home that had been severely damaged by Hurricane Ike, we went to the veterinary clinic where our beloved dog, Sadie, had been kenneled to endure through the storm, in the state of fragility and illness that she was having, in the months leading up to this date.  The doctor called us and let us know that she had turned critical, and that we should come.  We did, and we faced letting her go.

    She was unable to eat, not able to move, and clearly, looking up at us with those big brown eyes, saying, “let me go”.  It was hard, holding her, hugging on her, and feeling her last breath as her life left her body and she passed over the Rainbow Bridge.  Again, gutted, we went home and sobbed our eyes out.  A broken house, losing a dog, and within the next three days, a third anniversary of Rob’s death.  It seemed all too much.  With the strength that we had, we moved through the time, and processed it as best as we could.

    Geoff – 2009.

    dsc_0555Geoff was my “uncle-in-law” from New Zealand.  A vibrant star – kind, committed, and a wonderful person, loved by so many – he was suddenly taken ill, at an early age, and never was able to come back from a state of unconsciousness.  It was devastating and shocking to the family and with every year that passes, he is missed by all.  We went to say farewell as we left to return from our trip there, which had been a joyous blessing full of celebration, at which he had danced and celebrated well into the wee hours.  This illustrates how suddenly and unexpectedly this happens to us.  The lesson is to live every day to the fullest.  He did that.

    Mom – 2010.

    Mimi_01Two years later, my Mom, in apparent decline, was diagnosed with terminal illness.  Due to her mental state, and her desires, the difficult treatment option was declined as it would have not been tenable, nor would it have extended her life in any way but one being in pain and difficult.  We chose hospice.

    I spent each day, at least once a day, being with my Mom, as long and as much as she could tolerate.  Some days, she was exhausted and fell asleep right before me.  Some days, she had the energy to visit with family and friends.

    She became less aware, and we knew she was preparing for departure.

    When she left, it was in the best of all possible ways – with our minister at her side, saying last rites, with us holding her hand as she passed into the next place and life.  As my Dad had said to me, “Take care of your mother.” in his last words – I made sure that I did my best to have her in a place where she could live her last days in dignity.

    Love is the Lesson.

    IMG_6809We are humans with our imperfect understanding and our time-limited “shells” in which we live in our human suits that equip us to breathe and supply energy by fuel consumption through an elegant and complex system that we continue to try to understand every day.  Other inhabitants on our planet exist in much the same way, but with different paradigms and in different modes.

    We have love that connects us.  Some of the other inhabitants with whom we have some levels of connection seem to love us back.  I am convinced that we do build solid relationships with humans and some selection of animals that indicate that this capability is part of the DNA of “earth beings”.  Some have less of it.  Emotions, whether chemical or not, charge us and drive us in our daily lives.  They are unmistakably the primary driver, like it or not.  Love is the positive, apathy is the anti-love, and hate is the emotional response when love has gone off the radar and dysfunction ensues.

    Every day we are reminded that this is a dynamic existence – that love, life, happiness, disaster, and demise are components of this.  Should our core cease to exist – personally, or planetary, the result is the same – our souls or our energy mass goes elsewhere.

    Physics enters the picture, but does not explain everything.  Faith is in the mix.  We give it all to God – and survey says that most people do have a God that is their higher power that they trust because it is all too much for humans to manage everything – this is apparent, and this is what we have learned, and what we know.

    Each year, the love that I have for all that are dear to me grows larger.  I change.  I am dynamic.  I age.  I know that I will have my event horizon at some point.  Sands through the hour glass.  Do the math.

    Love now before it is too late.  In the words of Bruce Cockburn, the song-writer and poet who has been through many ups and downs:  “Life Short, Call Now”

    That album title says it all.

    rob-baby_waving_hiDon’t be too busy to call.  Don’t put people off.  They might not be there later, when you finally remember to call – or you might just get that call, but not from them. 

    It happens.

    We did right by my Mom.  Daily, sometimes twice daily, I would spend time with her, until she was exhausted and had to rest.  In the days ahead of her passing, it was painful to watch – anxiety racked me, and with my experience, I knew that the inevitable was coming soon.  When in her last hours, and as she passed, she had the most optimal of situations – with a last rites by our minister from our church, and three of us holding her hand and praying as she left.

    She had a send-off that was as ideal within our beliefs, yet every send off is as it should be in the eyes of God.

    This is hard for us humans to grasp.  That time is not held for those last conversations, for good-byes, or other reasons to hold-off.  We understand this very well by now.

    This dealing with departure, is difficult, and is painful for those who survive no matter how you slice it.  My perspective is that we need to live each day knowing that it is not our decision as to when we go.  We may or may not have lead-time.  It is hard not to live, waiting for the inevitable to happen.  Churches are full of people who are trying to cope with this by being with others and hearing either comforting words or words of warning, whichever seems to help them the most.

    For me, I go through this period of time each year, working through the loss lessons, learning a little more, each year.