you just know

January 26, 2016 at 4:20 am (Uncategorized) (, , , , , , , , )

there are moments in our life that we can either look back and say “yeah, that changed my …” or you may actually just know at the moment that something important has happened.

it may change your life forever.

it may change your perspective.

it may change your soul/core of who you are.

it may be an event.

it may be a person.

it may be a book.

it may be a simple sentence spoken by someone at the table behind you.

it does however change you and in those moments we sometimes get a glimpse of how it is changing our world.

there have been many of these events/moments in my life. one of the most recent would be the blood transfusion.  even as we were walking through the doors where i would receive this ? i felt an urge to turn around and walk the other way back to our car.  notice i say walk back to our car? well on that day i was walking from the parking lot, although from the closest handicapped spot, but i was walking without assistance most of the time and without all consuming pain.

after that day, three days later actually, my life has been changed once again.  i had to be admitted to the hospital after the transfusion. i left there with a walker and oxygen. i was no longer able to travel and forget about driving.  outings with friends and family were now highly unlikely. a friend living in another state whom i wanted so much to come visit was not able to due to my serious health change.

the fluid buildup means i have difficulty breathing. at times i cough so hard it feels like i am going to suffocate.  even with the oxygen these attacks come.  it is frightening to say the least. the fluid around my heart is more of a problem.  don’t get me wrong none of this is unexpected.  it is the suddenness of all the changes that has caught us off guard.  i have a progressive disease that should have claimed me before year five. it has been two and a half years longer at this point.  there are no complaints here.  we have had such a great life together.

he still talks about the future.  after talking about some event in 3 years he says i will be here for it to take place. this is at once endearing and heartbreaking.  my voice says please accept the reality and talk about how you are going to move forward with these plans without me. his voice says “you don’t know” and “i can’t think about that now.”  i understand but then who do i talk to and feel like they will help him when the time comes?  it seems unfair to burden the kids even though they are adults.

funny that the moment i saw him walking down the street with that little bounce of his i knew my life was about to change forever.  i had no way of knowing just how true that would turn out to be for us both.

on good days and bad i like to take a few minutes and think about the moments that have made my life this beautiful experience.  there are too many to list here. if you think about it you have more of these little moments than you think.  i hope that even when i am gone you will keep me on your life of moments, you will always be on mine:)


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the diary of anne frank

November 2, 2015 at 4:15 am (Uncategorized) (, , , , , , , , , , )

just about every kid in the u.s. has been required to read the diary of anne frank.  i have a few books that i have read multiple times, each time having new thoughts and even discovering a turn of words that i now see in a different way.  before living in germany i dreamed of some day visiting the camps and more importantly the last place this brave young girl lived out the last days of her life.

“where there is life, there is hope.” anne frank.  she was so young and had done nothing to deserve what was going to happen to her and her loved ones.  don’t worry i am not about to compare myself to anne frank.  we all have words that touch us deeply and guide us through life.  these seven words have gotten me through some pretty extreme situations.  after all if this young girl could be so incredibly brave and still believe there is hope how can i not?

these past two weeks have definitely challenged my desire to honor these brave words.  it has been a two full weeks since i went to the dr.  at the time i mentioned having all the symptoms of a sinus infection.  these are routine for me and expected on a regular basis.  later that evening i was coughing uncontrollably and realized that i had been doing so for at least a week maybe two prior to this visit.  as the days went on i had fever and the exhaustion became worse.  the feeling of drowning whenever i tried to lie down convinced me that i most likely had pneumonia.  i have had this before, however, since the symptoms can indicate other illnesses it can be difficult to nail down (without an x-ray that is).  the dr had given me antibiotics so i thought and still do think that it is just a matter of time for it to clear up.

tonight i am not so sure.  maybe i haven’t been sure for two weeks.  where there is life there is hope i tell myself.  our family had been planning for months to all meet in hilton head, south carolina.  there was going to be a car show and everyone had the bug to share this event.  as the time came closer, it was this weekend, it became clear that i would not be able to go.  although angie had been a part of the planning and had some great ideas for family fun time away from the car show.  she immediately stepped up and insisted she stay home with me.  my sweet man was so torn i felt relieved when he finally headed out.  up to the last moment he would say “what if something happens while i’m not here?”

whether it is from the anemia or the heart failure or the possible pneumonia my exhaustion reached a new high.  sleeping was and is difficult.  if i lie down my breathing becomes strained and rattles.  i use my inhalers with little to no effect.  dozing for periods of time only to wake in near panic as my breathing becomes impossible.  the fluid retention is more serious than it has been to date.  if i thought i had difficulty before this raises the bar to an all new high.

let me walk you through this.  if i were to stand behind you with my hands locked around you in the position to perform the traditional motion for someone choking, then suddenly squeeze and push against your solar plexus you would experience what i am on a continuous basis.  this isn’t to elicit sympathy.  i say this in order for my next thought to be easier to understand.  these words that have resonated with me for most of my life have taken on a new vision.

i see this young girl writing in her diary what a young girl believes, where there is life, there is hope.  it was the hope of a young girl who had not yet truly lived her life.  she hoped for an end to this insanity that had her life on hold.  on the other hand i am on the other end of the time line.  i have hope, it just isn’t the hope of a young girl with her whole life ahead of her.  tomorrow i go to get cross typed and matched for the blood transfusion i am to receive on tuesday.  it has to be done through the outpatient dept due to the congestive heart failure.  transfusions are risky for us.  it is clear to all that i need this, my concern is with my obvious increased fluid retention i may not be a candidate.  my hope is that i am able to have the transfusion.  if not then i hope for relief to come after the holidays.  i ask for this not for myself but for my family.  it would forever leave a dark cloud over future holidays for my grandchildren.  for the rest of their life it would be sitting there in their heart.

so here is my where there is life there is  hope, i hope to spare my loved ones the memory of this loss to be forever linked to what should be a joyful time of year.  i hope to see them over the next couple of months.  i hope to leave with dignity.  i hope to leave knowing that those i love feel my love for them.  and dare i hope for you?  i hope that you know the kind of peace of mind and heart that i have been blessed with.  i hope that you are loved the way we are meant to be loved.  i hope that you leave that door open no matter what has happened in your past.

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i just couldn’t do it

April 12, 2014 at 4:04 am (Uncategorized) (, , , , , , , )

this morning i realized i just could not make myself go to the g.i. dr.

for hours i tried to go over the reasons for the visit and it just came back again and again to what will be gained by this?  i have an appointment with an oncologist (they do blood work) on the 21st and i am hoping to get the transfusions scheduled without much ado.

if i get the transfusions and go another 5 years without a problem then what the heck?  if i really have to see the g.i. guy then i will.  the idea of more tests that lead to nothing just aren’t on my bucket list.

of course chris was surprised and concerned.  i am sure we will have more conversations about this but for now i can distract him with taxes, our granddaughter’s birthday and our impending visit to charleston.

oh charleston, we need you now.  it is 5 a.m. and i am going to bed.  i am hoping to sleep.  i am hoping my uncle will not come to me in my dreams wanting me to get on the plane with him.  a few days ago he said he would wait and then he smiled as though he knew something i didn’t.  of course he knows a lot of things i don’t know.  he passed a few years ago.  someday i will tell you about him.  for now i will just say he loved his family and he was a good man.  but i am not ready to get on that plane with him no matter how nice he is:)

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