Protecting Phray

From the beginning I have known I was CHOSEN FOR SOMETHING. April 10th when I was called to the hospital to advocate for Phray I met Ywi and immediately loved him and he me. Beyond the difference in size and skin color and ethnicity and educational background and every other demographic "barrier" there is a spiritual love and a mutual understanding- a kinship of our soul. Ywi has described it as the God's secret. For exactly what I was chosen I had no clue. Originally I thought it was for mission work over seas, then mission work here, what ever it is- it is to be done with Ywi forever.  Now with each passing day of the last four months, I understand it is less about Ywi and I- but for Phray Reh. 

When I used to teach workshops to refugees I would explain about US culture and the laws. I often taught about the  US government and the rights of vulnerable groups such as children, disabled  and the elderly. I explained that the US government tried to protect these vulnerable groups. I often cautioned refugees about discarding certain non hygienic practices or other cultural norms that would draw the attention of the US government to misunderstand a refugee's culture. I discussed that the United states has governmental social service agencies that can remove children, disabled or elderly from one's care into a home and into the care of the state government.  I NEVER EXPECTED I WOULD BE WRITING ABOUT PROTECTING MY VERY OWN LOVED ONE FROM ONE OF THESE SUCH GOVERNMENTAL STATE SOCIAL SERVICE AGENCIES. 

Today it was revealed to us by a source that Adult Protective Services was notified that Ywi and I made a choice to keep Phray out of the ER yesterday when his BP plummeted into the 40's. When Phray's PCP was out of the country and there was no one on call to cover for him, We chose not to call the ambulance but instead to care for our family member with love and hope at home. Ywi made this choice based on historical evidence of Phray's previous visits in the hospital where he lay for days despondent and depressed. We chose to take action with extra tube feedings, increased hydration and adding in a bottle of coke for a little caffeine stimulation. Soe Meh and Ywi gave some traditional massage and we monitored his BP and temp regularly. Our efforts yielded an increase in points of his BP with each passing hours until we eventually landed in the 80's. 

For those who know it may seem I have gone MIA the last 4 months. Often the Karenni ask me, "Where you been, Jen? Long time no see". It is beyond anyone's comprehension to try to explain the lengths it has required to oversee Phray's care in a system of systems intended to care (i.e. social services such as supplemental nutritional assistance program, medicaid, PCPs offices, hospitals and the like). I have spent countless hours "policing" these systems like an old maid with a broom stick in hand sweeping out the riff raff from the porch. 
Let me highlight just a few of these examples here for purposes of documentation if for no other reason- as I have been told to document everything (especially now that Ywi and I are under the scrutiny if APS): 
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Example # 1) During Phray's last stint at the Medical Center we were sent home on an increased dose of a BP lowering medication, not previously prescribed to him as an inpatient. He bottomed out immediately. We made a wise choice to tailor back that dose to his original dose he was getting prior to admission. Simple common sense saved the life of Phray. To Ywi's credit- as he is the one who caught the discrepancy. 

Example #2) The ordeal of ordering a simple trapeze bar, resting arm splint, gel overlay mattress cover, bed half rail and larger size wheel chair- This simple task took Fairview Clinic more than two weeks to produce the orders for. Which I, myself eventually picked up and hand delivered to MedEquip (Kudos by the way to MedEquip who have been outstanding in their warmth, care and customer service). These materials are essential to Phray's recovery in enabling him to regain strength. 

Example #3) The Modified Barium Swallow Study- Again, during Phray's last stint at the Medical Center. Phray was to have a MBSS. Ywi and I left to do some errands. Both our numbers are listed in Phray's chart and early on Ywi and I made sure Ywi was POA for his Father and presented this paperwork. Given that Phray sustained a major stroke and TBI (permanent TRAUMATIC BRAIN INJURY) this was an absolute necessity. At some point when we returned home, we inquired about the results of the MBSS and were told that it was inconclusive because Phray was "non compliant". I raised the issue that never once was one of us contacted to assist. Phray often goes back and forth at home into states of confusion and sometimes becomes very toddler like. I can see how someone in this frame of mind who has never known previous Western medical care could certainly be non compliant. My expectation is that hospital staff are trained to contact next of kin and emergency points of contacts and POAs listed in the charts of such patients. That never happened. 

Example #4) Ywi's foodstamps- While "policing" our various "helping agencies" I also undertook the task of applying for Ywi's food stamps, since he stopped working to care for his Dad full time to keep him out of a nursing home. This was quite an ordeal. To make a long story short, DCBS received but did not scan the paperwork for Ywi's case in the time allotted for his case to be approved. Because I was smart and anticipated such an error, I saved the mailing receipt and tracking number. I was able to get his case priority and not have to start all over, but not without having to spend over three hours waiting at our local DCBS office for a supervisor. 

Example #5) Creekwood Apartment Complex, Bowling Green- Kentucky- Here is where Ywi and his Father have lived the past two years. Our family, Ywi's brother and Sister in Law and two children live in a nearby unit. When Ywi and I need to leave- they provide respite for Phray. Ywi and I spend a great deal of time helping them here in the states as they have been here just under a year. Ywi and I notified the Landlord and the two maintenance  workers about Phray's situation. We explained our need for a bottom floor apartment for issues related to quality of life but more importantly for SAFETY in case of an emergency. We were told we would be first on the list for downstairs unit. We explained we did not care about the size as long as it was down stairs and we could get out easily. The Landlord agreed. Regularly, I checked to see if anyone had moved or there was one available. Juest yesterday I learned that a family I know well vacated at the end of June and a new family was placed. I EXPRESSLY asked the Landlord yesterday while she was cleaning common areas if she'd know anyone to vacate a bottom floor apartment recently or if there would be any openings and she EXPRESSLY LOOKED ME IN THE EYES AND LIED TO ME in front of the maintenance workers and who looked to be her husband and young son. 

Example #6) FREE bed pads and breifs- Because Phray is incontinent and low income, medicaid will pay for his briefs and bed pads. I tried to arrange this nearly 5 weeks ago when I found out about the program (never mind that it was actually the JOB of the hospital social worker to do so). That "paper" or "order" sat in a stack and was forgotten about… needlessly- again another call from Jennifer Bell raising hell to get Phray's needs met. Because you see every pack of briefs at Walmart that barely lasts a week costs us $11.00 plus tax. I was quite forgiving when the worker apologized to me saying this was her error and her negligence. We all make mistakes. Me too- everyday. We just need to own our mistakes and realize at the end of every mistake is a person and a life and in this case it is Phray. 

Here are SIX HARD examples NOT INCLUSIVE OF THE MANY that came in the three weeks of Phray's initial stay at the Med Center at the onset of his stroke-  when the language line was never used for Ywi before my arrival (as told by Ywi), when a nurse sent us home with sheets and told us to return the after Phray died or urged us to use end of life Hospice care for his comfort despite a different prognosis from the Neurologist. Were we vindictive people, we could have taken legal action here. Ywi and I NEVER once have felt Phray was destined to die as long as he was off the Fourth floor, where Ywi indicated he felt Phray's blood did not agree. Originally, I thought not to give these institutions names, but THIS is OUR experience and there is nothing to hide and no reason to be coy or political. The TRUTH is the TRUTH. 

To say I am struggling not to lose my faith in the goodness of people is a gross understatement. To top off todays news, my $299.00 phone fell from my hands at the top landing of our second floor apartment (which we have been waiting patiently to get out of and into a different unit) and landed face down-smashed- on the bottom tiled floor- with all my pictures and Karenni lessons in it- and I can not really afford to replace it. Likely such an accident occurred because I could not see as tears were streaming down my face when I got the news that an APS report had been made against Ywi and I when those who know Phray and know us KNOW it is Ywi and me and Soe Meh and Ai Phien who have nursed him back to health---- this amazing man- a freedom fighter, father and keeper of ancient traditions and primitive stories-  who came home, unable to swallow or move the left side of his body…. Who sat up LAST NIGHT AFTER HIS FAMILY CARED FOR HIM AT HOME AND RESTORED HIS VITAL SIGNS and gave me Karenni alphabet lessons with Ywi. 

Any Questions about his Care now? 

CONFUSION

Confusion.

i don't know where the confusion begins. or why it can not end. perhaps it starts with the stairs- because we can not find a first floor apartment in close proximately to Phray's oldest son and daughter in law (who provide respite for Ywi and I) we are bound to our second floor apartment at this time. Each time we must take Phray to an appointment we navigate the stairs in the picture you see below. We gather up the folks in the community and carry him like a pig in a blanket- up and down the stairs; Perhaps THE CONFISION starts with difficulty of our living situation- the carpet, navigating a hoiyer lift through the narrow halls of 700 square feet at best; the inability to access the bathroom to properly bathe Phray; the inability to get the wheel chair through the door frame- the fact there is no money to run the AC in the heat of the summer and we don't trust the duct work here even if we had the funds to do so; the hardness of heart of the landlord's refusal to take up the carpet and lay down linoleum to cut down on the odor and make navigating the lift and the wheelchair easier; Perhaps the confusion starts with the fact that Phray's insurance (Coventry Cares) denied him from the local rehab hospital simply because he is weak although the rehab hospital and staff hospitalist approved him; or that I seem to know more about navigating a system of help, clinical continuity and follow through than those PAID to do so;  Perhaps the confusion begins with my own chronic back pain in the form of a pinched nerve at T-4 running straight down the entire right side of my body, leaving only Ywi to do the heavy lifting of his Father. When  see his face and I feel so helpless. 

FOR IN THIS CASE… DESPITE HIS SHIRT YOU SAW IN THE PREVIOUS POST "SIZE DOES NOT MATTER"… IT REALLY DOES

clarity.

What is clear is God's love throughout the confusion. When we arrive home from the hospital and we run around our complex looking for help from anyone to carry Phray up the stairs to his bedroom- the people come when we call- if they know us or not, of they are Karenni, or American or Hakka or Zo or Zo Mi or Karen or Catholic or Church of Christ or Baptist or Bhuddist or anything else. What is is CLEAR is my 2 1/2 year old son's and 11 year old daughters compassion for a man they have known only eight weeks. This is the work of God's love in our lives. The first time He met Phray in the hospital, my son extended his hand to Phray and  held on tight. Now he kisses his head each day and compares diaper sizes and who poops at what times and how often. They are brothers in Christ, one 2 1/2 and one 69. Phray and JJ. Ywi tends to his Father and I tend to JJ. People in the health care world are continuously shocked when say we will not put Phray into a nursing home. I remember five years ago when I stopped working. I could no longer bear to allow someone else to raise my children. No more than Ywi can bare to give his Father's care to a stranger. 

Clarity comes in the form of miracles. He nearly died twice in the hospital. When Phray arrived home over 6 weeks ago. He could not swallow. He was completely paralyzed. He now swallows and is no longer paralyzed. He ate by mouth for the first time two days ago without choking with the assistance of "Thick- It". Phray has times of lucidity and times of being completely infantile. He vacillates between memories of yesterday and years ago- he lives in the world and he lives in the sky. He was so clear in the hospital when he said to me through Ywi interpreting…

"When I am better, I want to go to the church with you and your son together every week"

For now Ywi and I will do the best we can to seek clarity and remain focused and straight despite the confusion- we do our best to live in the sky. We ask your continued prayers for our families daily, here and abroad as we remember yours.

the stairs 

the lift. the carpet. the hallway. the bathroom- in the back. 

phray waits for team of volunteers to help carry him upstairs before the storm

size matters "sometimes" 

Say Reh, Ywi (Karenni) and Friend (Karen) help get Phray back in bed after  trip to hospital 

the amazing and talented Joe from Medical Center Home Health team who helps us every time! Thank you Joe

Ywi's words: "I wish I was big like Joe and I can just carry my Dad anywhere, every time, then I am so happy! "

sad realities of food systems and healthcare in the US

Natalie and Phray have a thumb war- she has a true servant's heart- the gentlest person I know next to Ywi : ) 

Father Joseph Breen of St. Edwards Catholic Church in Nashville, TN where a large Burmese community worships- Father Breen reminds us each Mass how fortunate we are as Americans to be born into a country where water and food are in abundance and how lucky we are to be born into a country where we can access these basic needs and these ought to be God given to ALL people but as Americans we forget these are NOT and we shall always be mindful of those with us here and abroad that struggle daily for simple basics of life. Blessings of material are to share, he always reminds us. 

to lead is to serve

soul books

karenni american catholic shan buddhist home of GOD where there is room for us all to LOVE each other

Vocation & Discernment

VOCATION has been painful for me. My vocation is SOCIAL JUSTICE, SERVANT LEADERSHIP. No matter the population or the circumstance, the overarching common denominator of my life has been a deep compassion for people. 

INTUITION guides my every waking moment and directs each step of my day. A STILL SMALL VOICE of God consciousness, ever wrought with a gamut of emotions and waves of inspirations of ideas that will never come to fruition, but never the less I am compelled to speak them out and send them on the way into birth of a potential reality, no matter who executes the outcomes.

As people of God, we each CREATE by speaking out those possibilities swimming in our minds. We each create as we connect and share those possibilities  however big and however small. Take solace in the confusion, knowing that GOD The Father Almighty created our hearts and souls and bestowed our intellect. That he knew us, yet even before we were formed. He sees our beginnings and endings and every middle, in between.  

Much like Phray's transient state of infantile mentation and his full formed personality, I am living above the world and end the world. It is a state of confused joy with a deep reliance on God to bring me smoothly through the transitions- I rely on him to integrate my being and the blessings he has given me providence over. Blessings of my children and of leadership and of being an example of his LOVE.  

APRIL 10th, 2014 after months of inner turmoil I could not explain and questioning of why the structures I had dedicated myself were falling apart, personally and professionally, I responded to a call for service. When in pain, help another person. This method is tried and true and it never fails. 

I was asked by a friend to tend to Phray in the hospital. I knew nothing of his situation and myself was grief stricken over certain circumstances of my life. In a state of complete dependance on my Holy Father and Holy Mother, I responded as I always do where Karenni people are concerned. I had only minimal knowledge of who Phray was. Two years earlier I watched him prepare a chicken for the Karenni cultural practice of "divining" chicken bones (more on this later). I recalled watching him gently and slowly crush the chicken in the hallway of the apartment of my friend- the apartment across the hall from the one where I now I live. I remember watching his calm. I remember watching the calm of the chicken. I remember the experience two years prior of seeing an old man's gentle spirit as he absorbed himself in a culture as ancient as the Gong and as solid as the matured Bamboo stands from which he came. I remember seeing the cross hanging from his neck.  
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The last five years of my life has been dedicated to the Karenni people (along with support to other groups of native ethnic groups from Burma (now called Myanmar), Somalis and those from Congo and Tanzania). I helped to establish the Burmese Ministry at Holy Spirit Catholic church here in Bowling Green, under the direction and supervision and partnership of Rev. Father Steve Hohman and Rev. Father Jerry Riney. 

A new convert myself in 2005, I began to understand my vocation to the fullest extent ONLY in recent months. God's work and my drive to be his arms and legs for social justice has reached far into our Bowling Green community. This reach began with the formation of a small social justice ministry called CEDARS (Center for development Acculturation and Resolution Services). Big dreams and high hopes led my vision for CEDARS and was the energy source for my inspirations and aspirations. CEDARS gained volunteers, support and respect and even secured a grant in partnership with our local University, issued by Catholic Charities- which houses the Kentucky Office for Refugees. The programs started by CEDARS had a dramatic and lasting effect on how the international community is treated more justly here in our town. This is evidenced by what can be called "the ripple effect". 

Some months ago, I began to hear a very powerful call in the moments just before the Eucharist. I heard Our Lord tell me to continue assisting the Karenni people and all those who asked my help, no matter the cost, no matter the uncertainty of worldly survival (i.e. a 9a-5p JOB). Answering this call has been a source of constant fear, guilt. I used the measures of success in the world as an inaccurate method to judge the validity of His call in my heart. Despite the circumstances  of my life, pointing toward this more worldly path, I listened, I heard, I felt, I watched. And on April 10th, 2014- Discernment ended- He revealed the mysteries of His call to my heart. 

GOD SPEAKS SLOWLY AND QUIETLY OVER A PERIOD OF TIME


WE NEED TO PATIENTLY LISTEN IN ORDER TO HEAR THE MESSAGE

BEING PATIENT AND HAVING GOOD LISTENING SKILLS 
IS SOMETHING THAT WE NEED TO WORK AT EVERYDAY.

GOD HAS AN IMPORTANT TASK FOR EACH OF US. HE OFFERS US THE ABILITY TO NOT ONLY RECIVE HIS GRACE BUT ALSO PARTICIPATE IN THE CREATION PROCESS.WE HAVE A RESPONSIBILITY TO HEAR WHAT GOD IS ASKING US AND UNDERTAKING THAT TASK. 

"LORD I AM NOT WORTHY THAT YOU SHOULD ENTER UNDER MY ROOF"

WHO WE ARE

• 

  On April 10th, 2014…  I was called by Bu Reh to attend to Phray in the hospital…

Personal Disclaimer: this is the story of how God brought me to him through answering a call to social justice. Our story is from my small perspective and with respect to others, potentially NOT their experience or perspective. The pictures and words of this story are written in full collaboration with Phray's son, Ywi (Phray's POA) and the verbal permission of Phray, HIMSELF- obtained during moments of lucidity and clarity. As I bring our story public for the good of others, I am reminded of the 5th Commandment ordering God's people, "Thou shall not kill"- and I add, as I understand the 5th Commandment… Not kill the body or the soul. I nor Ywi nor Phray hold willful intent to cause harm to others with this blog. Our only goal is to give hope, teach and share God's message through our story. Your comments are welcome in a private email. ywijeni@gmail.com

 "Thay Bwee" (Thank You).    

WHO AM I?  

For many this may be one of life's most perplexing questions? For me? Not really. I have known who I am and what I was from as early as I can remember… maker, creator, artist and teacher. Give me permission and I will do my best to give you a masterpiece! 

As early as I can remember, too. I have been a Catholic in the making +++

Discernment has not been without great pain, sacrifice and dying to the self many many times over. I have suffered, my loved ones have suffered and those on the perimeter have watched and wondered.  

In 2005 I became a Catholic by the seat of my pants. In 2009 I met the indigenous people of Burma (now Myanmar) from Karenni State. My life, my character and personhood was changed forever. 

To Americans I am Jennifer.

To Burmese Americans I am Jen. 

To Karenni-Americans, I am Ywijeni. 

To Ywi, I am Jeni.

To God, I am Child. 

To Jesus, I am Sinner. 

To the Great Advocate, I am the voiceless. 

WHO IS YWI REH?

Ywi, multi ethnic- Kayah and Shan, is the second to youngest son of Phray. He was born as an IDP (internally displaced person) in the jungles along the Thai- Burma (currently Myanmar) border. Ywi arrived to the US in June of 2009 with high hopes of an education and seeking answers to his many questions and curiosities about the West. For two weeks, he sat quiet and terrified with his Father and two friends inside a brick and mortar 'home'- eating from the Save-A-Lot across the street. Ywi was one of the first Karenni refugees to arrive in Bowling Green. Time and Money. Only two months later, Ywi learned the realities of the West. High hopes for an education and a quest for knowledge came to an abrupt halt. Ywi began work in the US at three months 'resettled'.

"I am the basics learning English in United States. I would like to learn English with the English people for a second language to improve my life. I do not have grades and college in Thailand and I study by my self and try to do everything by myself. I don't want to be like the past. I would like to improve my life in the future. I try to study the English better for me. If I have an education in the US, I would like to return to Thailand and teaching the Karenni people how to do and also English. Also to build Karenni culture good. If you read this letter, you need to try more than me."

WHO IS PHRAY REH ?

Phray Reh is 68 year old, single man from the Country of Burma. Phray Reh and his family survived in hiding along the border of Burma (currently Myanmar) and Thailand for nearly 20 years before finding REFUGE in a closed camp along the Thai border in 1996.

Thirteen years later, Phray and his son Ywi, along with two friends relocated to Bowling Green, KY. Here Phray attended weekly worship service and was a regular at the local resettlement agency, where he gleaned as much education as he could about American culture and the English language. 

NONE OF THE EDUCATION HE RECEIVED PREPARED PHRAY NOR YWI for the events of late March.