10 April 2017 Tearful talks couples have (allowing ourselves to grieve), poem and Blue bulbs (Autism Awareness month)

Good evening to you.  I need writing therapy, so sorry, here it goes!

Before Kyle left for work we had a good cry together about things.  Things we hadn’t really talked about before.  We talked about having children in the world of these times and how hard it would be.  He said he had been asked at work if he  had children and he joked back to them, “Would you really want more of me running around?!” When he said that I started to cry and said, “Honestly Kyle, I wish there were more of you running around.”  It just wasn’t in the cards for us and with my condition, adoption will never happen either.  We have had difficulty at times making sure the little family we have (dogs, cats and us) are ok financially much less bringing a little human being into the mix!   We know we made the right decision back in August of 2005 when I had a hysterectomy because I was getting cysts and it was becoming life threatening.  We had to choose and we chose me.   It still hurts sometimes though when we really talk about it.  We sometimes need to allow ourselves to grieve what we have lost and or will never have in our current lifetimes.

I wrote this poem tonight.  In between waking and sleeping last night, a poem came to me but I didn’t get up right away and put it to paper!  This one speaks to what it can be like for me sometimes being a sensitive person who has experienced all the strange things I have through the years.  The title of my blog, As I See It, Seeing Through The Visible has been the gist of a lot of I write here.  A lot of people walk through life on the top surface and are perfectly content with that…”surface dwellers”.  Others sink deeper under the layers to varying degrees of “seeing” this world and existence and would like very much at times to just be able to be a surface dweller again but can never go back once awakened.   While mucking around in the layers you and others often question your sanity…your soundness of mind.  You acquire labels and accompanying medication so that others might begin to understand you.  Often the people who love and or care about you are left on the surface getting more confused as you sink deeper into places they just assume avoid or will not go.  It can be a very isolated and lonely existence to be a person like me and often it is.  People are not often comfortable being around people like me and I completely understand why.  I’m so grateful for those who have taken the chance to get to know me and help me when I’ve fallen down.  There aren’t enough words of gratitude from me to those brave souls which include my in-laws!  I’ve accepted this as my “hand” to play and just have faith the God of my understanding has a plan for me in it all.  I’m a Creep and I’m o.k. with this….no going back now!

I walk between worlds of reality and make-believe

A most dichotomous path

A life in between the lines of those who’s soul purpose is to deceive

The layer under the most traveled course

Wherein are found the peacemakers

The warmakers and moneychangers intermittently taking their turn with the world using elementals of love or force

It is a lonely path but one I was always destined to tread

Walking the squiggly lines

Between the living and the dead

Anyhew….

Today I stopped by our local G & L General Store in the square and picked up a blue LED lightbulb for our back porch in honor of Autism Awareness Month.  I was glad to hear things are going well for these folks!  On the way home I stopped by our public library because I wanted to see our friend and librarian Kelly.  It was so good to see her, hear her voice, see her smile and get one of her hugs!  I renewed my library card too!  Reading is good medicine!  Sometimes I wonder if Autism is nature’s way of trying to protect children from the world we have made.  I hope I’m wrong.

 

https://www.autismspeaks.org/about-us

About Us

Our Mission
Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.
Next 10 Vision
Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Recognizing the need for a powerful voice Bernie Marcus donated $25 million to help financially launch the organization. Building upon the legacy of three leading autism organizations, Autism Coalition for Research and Education (ACRE), the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN), who merged with the organization, Autism Speaks has made extraordinary advancements in the autism community.  Chief among these are increased global awareness of autism, better understanding of the breadth of the autism spectrum, and advocacy to increase research and access to care and support.
Today, Autism Speaks is dedicated to advancing research into causes and better treatments for autism spectrum disorders and related conditions both through direct funding and collaboration; increasing understanding and acceptance of autism spectrum disorders; and working toward solutions for the needs of individuals with autism and their families across the spectrum and lifespan through advocacy and support.
To accomplish this, Autism Speaks will relentlessly pursue strategies that make significant progress toward the following outcomes over the next 10 years:
  • A better understanding of the causes and typology of ASD
  • Children with an autism spectrum disorder being diagnosed before the age of 2
  • Children having access to appropriate intervention, services and resources immediately following diagnosis
  • The availability of better treatments both for underlying pathology as well as co-existing conditions that decrease quality of life for those with autism
  • People with ASD and their families have transition plans that result in more independent adult life that is meaningful to the individual
  • Individuals with ASD will have effective interventions, services and supports throughout their lifetime
These goals can only be achieved through work in communities nationwide, at the federal level and globally by working with partners, governments and other organizations.  It will require an inclusive approach that values diversity and individual needs.  We will work in partnership with those who share our goals, ambitions, and values.
It is clear that the mission of Autism Speaks will require the organization to grow in new ways and build capacity to be a sustaining organization to accelerate progress in science and support individuals with autism and their families over a lifetime.  This will require investment in people, infrastructure and process in order to operate as a best in class non-profit organization.
For you Oya, that drawing I talked about:

There was a tree at a park called Gleason Park I used to visit when I lived in Florida that always seemed to have people in wheelchairs sitting under it. I thought of it as the healing tree. My friend Dymoon (Oya) this is drawing I was describing to you today.

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5 comments on “10 April 2017 Tearful talks couples have (allowing ourselves to grieve), poem and Blue bulbs (Autism Awareness month)

  1. I like your poem and I agree… we walk a lonely path…. and I’m with you to worry about the future of my children would be a hard thing and it probably would cause sleepless nights for the rest of my life. I hope that all who have children will ponder about their future and they will stay together to give this future a chance…

  2. Invisible disabilities are hard to deal with – for the suffer and the general public. I think you are amazing and I feel for you over the children thing. I was lucky to be able to have the children I wanted (losing one along the way – and that never leaves you) but M.E. made made me one of those about whom people said, you don’t look ill.
    I send you love from across the oceans, all the way from Cornwall, UK. xx

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