by Margarita Mercure Hibbs
Rural Advocate and Former First Lady of Estancia

Danny is 44 years old, Downs Syndrome, brittle diabetic with Celiac Disease, speech impediment or stutter and about the emotional age of 5 or so.  Danny has two little angels that live in his two index fingers; Marcus is in his right and Mikey is in his left. They have been with him since he was a small child and have helped him cope through a difficult and confusing life.  Psychiatrists would call his angels, alternate personalities.  To me, Danny is a sweet and loving angel with complete memory recall about every person he has ever met, but he also has stubborn and lazy tendencies. Danny's parents died years ago and Aunt Clara, in her 80's decided that it was time for someone younger to take over Danny's guardianship.  I am Danny's legal guardian and advocate.  

On a Tuesday morning at 6:30am, I got a call from Danny's home and caregiver, Vanessa, or Molly as Danny calls her and she told me she was with Danny in the Emergency Room of Presbyterian Hospital, in Albuquerque, NM.  It was yet another upper respiratory infection and this time severe pneumonia and sepsis.  Sepsis is essentially an infection in the blood.  These two things brought Danny to the hospital, but unfortunately, as things unfolded, his health issues grew more and more complicated with each passing day.  It was an adventure to say the very least. (Note to everyone; I am not a medical person.  I am just a simple woman who loves Danny and Danny loves me back.)

I met Danny when I married my husband Marty, his older cousin, who he calls Uncle Marty.  I am a singer and Danny fell for me as his special friend because of the music.  His favorite songs vary with the person or people he is with, but his favorites with me are Moon River, Nature Boy and Bye Bye Blackbird. Moon River because he loves any song with his favorite word Moon in the lyrics.  Nature Boy because he told me once that he is my "Magic Boy" with a beaming smile that always makes me tear up at the memory of that moment.  Bye Bye Blackbird is simply because its rhythm and words are simple and comforting to him and on some level, he relates to the words; "Where somebody waits for me, sugar sweet, so is he...Bye Bye Blackbird."  During this most recent visit to the hospital, nearly 3 weeks, and these songs proved to be more important than ever before. 

When I left to the hospital a few hours after receiving the call, I left with only my cell phone and no laptop, thinking that I would have someone bring it to me later. Later when I was asked if I wanted one, I replied, "Yes I want one, but I cannot divert my attention away from Danny."  It was clear that Danny would demand all of my attention, imagination and patience.  As my time in the hospital unfolded, it was clear that I had much to learn about Danny's issues, his recovery and myself.  I am grateful for the experience, even if I am sometimes disappointed by other people's lack of understanding. Even now, the follow up appointments involve helping Danny process the many changes and adjustments to his life that we never imagined, like a gastric feeding tube.  Danny is a foodie and this has been a painful and difficult transition for him.

As I struggle to catch up on all the writing and work that I should have done during that 3 weeks, I feel resolute in the knowledge that I was where I was supposed to be. The timing of my life with Danny as his guardian and advocate was good and the lessons were many.  Somehow, I managed to raise a loving and supportive human being in my youngest child Matthew. Over the course of the 3 weeks, I came to see that in the hurry of living and working and doing, all four of my children are incredible human beings and that "Lo and behold" I had done a good job as a mother.  I am not certain why I am so shocked at this. This is the goal of any mother, right? It was because of my intense experience with my Danny that I came to realize all these blessings, in ways that I might never have otherwise. 

So why did I call this story "Danny and the Ryan Plan"?  Well, it is very simple.  Congressman Paul Ryan of Wisconsin wrote up a Budget Plan that is called the Road to Prosperity Budget Plan.  We all call it the Ryan Republican Plan and with all but 3 Republicans, it passed in the House with a majority on April 12th.  Luckily, it failed in the Senate.  The plan, while praised by the Right Wing Pundits for being courageous and brave, is heartless and hard and by the way, hated by most of the people that cared for Danny during his 3 weeks in the hospital, including me. You see, Danny is covered by Medicare A, B and C and Medicaid and Social Security.  Without these four components, Danny could not survive.  The Ryan Republican Plan wants to drastically change Medicare into a Policy Support Voucher System, cut Medicaid by nearly a third and privatize Social Security.

This plan, if successful will hurt every disabled person in America, not to mention the elderly.   Danny's caregivers were evenly split politically; 50% Democrat, 40% Republican and 10% Independent.  All have dedicated their lives to caring for others as Doctors, Nurses, Nurse's Techs, Radiologists, Physical and Speech Specialists and Therapists of every area you could imagine.  In all the 3 weeks that I was there, there was only 1 person in the mix that had no opinion. In general, my respect and love for the medical profession has grown. Danny's nurses and techs were more than nurses and techs; they were Angels, so much so that I cry at the memory of their kindness, dedication and patience. 

There was one 27 year old Republican Nurse that told me while helping me bathe Danny after a messy accident in his bed, that she was so ashamed of her party's leadership in Washington over the issues of healthcare.  She was not sure that she could continue to remain a Republican if they continued in their push to mend the deficit at the expense of the most vulnerable in our society.  After finishing the arduous task of bathing and changing the bedding, Danny grasped one of Jean's hands and one of mine and kissed each one and said in his halting speech, "Know what Jean? Know what Myaita? I love you!"  While Jean and I hugged each other with tears in our eyes, Danny smiled broadly and kissed Jean's hand again and said to me, "Don't cry Myaita."

Now a word about why I try to explain Danny as I did in the first paragraph of this article; often, people are afraid of special souls like Danny.  As his advocate, there is nothing more painful than watching normal people react in fear or horror at Danny smiling broadly, extending his hand to shake theirs, while saying "HiLo! Your name is? My name is Dan Man!"  So imagine my frustration at a segment of our political world that refuses to see the treasure and worth of all our disabled and special souls everywhere.  Ugliness does not reside only in one party alone, although Ryan and his cohorts are the carriers of this most recent effort of indifference, I have to say that "Lip Service Regard" on the part of others from all sides, is no better.  

What I am most concerned about is the social slide to dismiss the poor and physically vulnerable and "defective" in our society as expendable.  After all, there are few lobbyists in Washington on their behalf.  As I write this I feel a mixture of anger, fear and grief as I give voice to these realities, but I feel that I must. If we don't speak up as decent people, we allow legislators like the man in New Hampshire who said "People with disabilities should be removed from society." to continue as if it is perfectly acceptable to sweep people away for being defective in some way.  The media does not appear to be championing these outrages.

As Danny's advocate it is not hard to imagine the worst from our society or the possibility that money and profits are more important than human decency.  Solutions like that adopted by the Nazis could be mimicked in bits and pieces by simply not funding services and programs.  Inadequate or absent healthcare is really extermination on the installment plan and there is a dangerous pattern in this, if this continues.  Decent and compassionate healthcare for all is not a Right or Left issue, it is a Right or Wrong issue.  Please reach out to each other and overcome this nasty divide that the profiteers, media pundits and wrong minded politicians are deliberately creating in our country and speak up.

Originally published at the blog site of Progressive Democrats of America at the following link:
http://www.onenationpda.org/index.php?option=com_content&view=article&id=498:danny-and-the-ryan-plan&catid=1:latest-news