For Lent I find myself reading in books by both Joan Chittister and Barbara Kingsolver. Today the readings were remarkably similar in message. Joan writes of wealth: "…the kind of wealth amassed to make the world a better place for us all….the kind of wealth that makes a social contribution that long outlives the life of the giver." She also says: "Clearly, the purpose of wealth is not security. The purpose of wealth is reckless generosity, the kind that sings of the lavish love of God, the kind that rekindles hope on dark days, the kind that reminds us that God is with us always."
And Barbara takes a more politicized view as she states: "I would like to have a chance to live with reordered expectations. I would rather that my country be seen as the rich, beloved brother than the rich and piggish one….We are by nature, a generous people…. as a nation, we just haven't yet demanded generosity of ourselves."
I am thinking of two people I recently encountered. One woman came into the Outreach office with a swollen knee. She is in such pain that it is hard for her to go to work. She went to the local emergency room and they literally looked at her and sent her home with a prescription for a steroid and a referral to see an orthopedist. That was a month ago.
This woman works part time at a job that pays her about $500 each month. She has trouble standing for long periods of time because of the knee swelling and pain. She and her two young children stay in the rented home of her older daughter. She has no insurance. She could not pay the initial fee of $200 that the orthopedic specialist wanted. She came to us. She does not earn enough to get insurance. She is way under the minimum amount of income to apply for the Affordable Care Act. The State of South Carolina has opted out of the Medicaid expansion that would cover her in many other states. After looking in the yellow pages of the phone book, we called a doctor's office. We pleaded with them and they referred us to the local free clinic that has agreed to take her and will refer her to a specialist at no charge.
On another day a man came in who was having trouble seeing. He has no insurance and very limited income. We sent him to a local eye doctor who agreed to see him at no charge. It was determined that he had cataracts and needed surgery immediately. An appointment was set up and our driver came early one morning to deliver him to the surgery center where they turned him away because he did not have any money. A discussion with the surgery center rep has not yet resolved this issue – they do not return our phone calls.
Joan also says: "The only security holy wealth looks for is fruit of the good business practices it takes to keep on making enough money to give it away to those who need it more."
I am loving my Lenten reading. I am thankful for all of you who share your holy wealth.
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Blessings come in the most unexpected places in the most unexpected ways. The parish outreach ministry has been in operation for almost three years. In all that time, until now, it has operated out of an office that is about 8x8 (feet). In that room we have had a small desk with a chair, two filing cabinets, a bookcase and two chairs for the clients. Needless to say, we have had to juggle bodies when we had a full group of volunteers and clients and needed to get to the filing cabinet or even open the door into the hallway.
Each morning before opening our door to the throngs of waiting people, we have tried to squeeze volunteers and staff into the space to pray – a great way to begin any day. Some days that has been the one moment of sanity in an otherwise chaotic sprint from opening bell to the end of the eternal list of people who have dire needs.
Last month our Parish Administrator asked us if we'd like to have a larger space. He ushered us down the hallway to one of the classrooms and asked us if we thought it could make an ok office for us. His caveat being that the children's religion program would be using the space on Sundays and the Narcotics Anonymous would be using it on Tuesday, Thursday and Saturday nights. And Brother David would be using it for the archives on Thursdays and Friday in the mornings.
We were so excited to have the hope of space that we enthusiastically agreed that we could live in the same room as all these others. So we took possession of some donated cubicles and set up our new office: three cubicles each having as much room as the original office, two file cabinets, a table and some chairs and space left over.
This is where the unexpected blessing takes place.
It was time for prayer on the first morning in our new office. We went out into the hallway and explained to the people who were waiting for us that it is our custom to begin our day with prayer. We invited anyone who would like to pray with us to come into our office and join in our circle. Slowly, hesitantly, one by one people got up from the benches and came through our door. They kept coming until our space was filled. As I prayed with them, I heard the "Amen's" and "Yes, Lord's" and more "Amen's". Then everyone went back out in the hallway to wait their turn.
We've been doing this every day since we opened our new office. Today the group was smaller, but each person offered their own special individual prayer. They were prayers of thanksgiving: for another day, for God's continued grace, for the outreach office, for getting off drugs and staying clean, for finding a place to live, for God's love. One blind man led off – he could have been a preacher – his voice declaring the goodness and generosity of God in his life and the lives of all of us. At the end the group gave out a big "Amen!" and left smiling to wait their turn.
There seems to be a lot more laughter in our hallways these days. People seem to understand we try to be as efficient as possible, but it is sometimes necessary to wait two hours before they can be seen. They do know that when it is their turn we will take the time with them that they need. Each of them knows we will listen to them. Each of them knows we care. And each of them knows we are all in God's hands.
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It has been a busy time in the Outreach office. Last month we saw over 200 individuals who came to us for help. As I write this, one mother and daughter come to mind. They are homeless and living in our local warming shelter. A 'friend" approached me at church one Sunday and said the mother was really sick – could we help. She had been to the local hospital and they had given her a prescription for antibiotics, but she was just getting worse.
By the time she walked to our office two days later, she could barely stand because she was having trouble breathing. She was feverish. We sent her back to the emergency room at the hospital with one of our volunteer drivers who dropped her off. She called several hours later to say the doctor had given her more prescriptions and told her to take it easy. They would not admit her. She has no insurance. She had told the doctor she was homeless. He had turned the other way.
It was very cold that week – in the teens. The shelter she was staying in did not open until 6pm and all the women had to be out by 7am. After 7am the women were on the street. The nearest day center didn't open until 10am and is closed on Sundays. The closest McDonald's was more than a mile away from the shelter.
I went to pick her up at the hospital. She collapsed into my car and immediately fell asleep across the back seat. It was obvious that she could not manage on the street. My colleague and I drove her to a cheap motel and got her a room. We walked her to the room where she collapsed again into the bed and lay there shivering as we looked for more blankets and turned up the heat. We told her we would
We went to the homeless day center where her 22 year old daughter was hanging out. After explaining that she was going to have to care for her mother, we packed her in the car and made the rounds picking up prescriptions and food. We delivered the daughter to the room a couple of hours later with lots of juice, food and medication.
Each day we checked on the two. The mother slept for three days. On the third day I sat on the bed across from her and had a full on conversation with the daughter and the mother didn't move. The fourth day was a Sunday and we paid for another night, knowing that there was no warm place for them to go. By the fifth day the mom was able to stand and take a shower and we had to take them back to the day center.
This mother had lost a good job, gotten into a training program for new work, been dropped off unemployment before she completed her training, lost her apartment, her car and was on the street. The daughter had not graduated from high school and was having trouble getting work. Each time one of them had a job something happened – usually sickness. They will be in the warming shelter until it
I know this woman would have died on the street last month. Because of your generosity, Truck of Love was able to help with food and lodging – costs that cannot be absorbed completely by the parish outreach. You saved a life and it cost about $200.
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It's been quite a month in the Outreach Office. We continue to see between 20 and 30 people each Tuesday and Thursday. We see a lot of people who have toothaches and other medical problems. The church is located in one of the most medically underserved areas of South Carolina.
One day last week a young man came in with a bandage on his arm. He had been to the local hospital where the doctor had wrapped his broken wrist and hand and told him to go to a local orthopedist for a follow up. He'd given him a prescription for a painkiller.
This young man had been working at temp jobs in construction for some time after losing his regular job. He has no insurance. Our local hospital is a "for profit" hospital and the policy is to treat the emergency and send people out with a prescription and a referral.
He came to our office because he had no money for the prescription and he also did not have the initial $25 to go to the follow-up appointment. He had had the good fortune to be referred to a doctor who would see him for an initial $25 with a promise to make monthly payments until the bill was paid in full.
By the time we saw him, he had been three days without anything to help the pain. He was worried he would not be able to go to the doctor because he had no way to get the first $25. He was concerned about the ability of his wrist to heal properly unless he got to the orthopedist.
You need to know that your donations paid for his medication and his doctor visit. He now has a cast on his arm. He made arrangements with the Doctor to make payments of $50 each month starting in December. He is working with us in the outreach office to get his South Carolina ID. He has contacted the temp agency to see if they have work he can do that does not involve using his right hand. He is planning on going back to school to train for new work.
This young man was very lucky to find a doctor who would make such generous arrangements with him.
On another occasion I was working with a lady who needed the services of a podiatrist. Her toenails are thick with fungus and because of a broken hip, she has trouble cutting them. She is in constant pain because the enlarged toenails rub against her shoes.
She is on Medicaid, but it does not cover podiatric care. I called every podiatrist in Rock Hill only to find that the initial fee for the first office visit is $200. This lady is on Disability and receives $730 each month. After paying her rent and utilities and food, she has nothing left for that kind of luxury. I spoke with doctor's office staffs and repeatedly asked what a person was supposed to do in this situation. The universal answer was: "I don't know."
I'm looking for solutions. We really do live in a medically underserved area of South Carolina.
Here's the next installment. (from last month)
We had a house that was set for the Section 8 inspection. It got inspected and did not pass.
I have learned so much about Section 8 housing. It is such a wonderful thing. But from the day my friend received the voucher she had 60 days to find a house that would be approved. By the time we finished with the house that failed, she was left with three weeks until the deadline. That meant that my friend had to stay where she was (in this case a house that had been almost completely restored - the landlord failed to complete his work). My friend had hoped to get away from this landlord who makes all sorts of promises, but is very short on action.
When we realized she had to stay where she was, we both began to apply the pressure. (This is when an advocate comes in very handy.) The landlord, by his own admission, works better under pressure. In the past three weeks, he has repaired the roof, connected the smoke alarm, put in a gas heater and had the gas meter installed by the city, put up handrails along-side both sets of outside stairs, painted the front porch, finished the brick work on the front steps, completed the foundation, vented the water heater, installed two new light fixtures, and put a lock on the back door.. Needless to say – all this took many phone calls, and trips to the city and the utility companies to keep the landlord honest. I've learned more about what goes into a Section 8 house, than I thought I'd ever know.
The upshot of all this is that the house passed inspection last Friday and she signed the lease on Tuesday. Section 8 does a very good job of making sure that people with vouchers have safe, clean housing to live in. My friend will have heat this winter- because Section 8 does not permit kerosene heaters like the one she was forced to use all last winter. She now has a year lease and she finally put up
So, last month’s story (August 2012) ended with my desire to stage a sit-in at the local DSS Office. Thankfully, it was unnecessary – the food stamp allowance was on my friend’s card that same night. The workers in our local DSS Office are overworked and victims of a terrible system set up by the state.
I also mentioned last month that my friend was just approved for Section housing under HUD (Housing and Urban Development). This will mean that she can have a better place to live and she will pay less rent. What a gift this is for her.
Last year she struggled each month to pay for the kerosene to heat her little place- it took every last dollar (at $4.00/gallon). I struggled with the safety of it all: a small house with no ventilation and a kerosene heater in the middle of the living room floor. Thankfully she came through last winter without accident/fire/ additional illness.
The Section 8 voucher (of which there were only 12 given this year in Rock Hill) will mean she will pay about $450 in rent and utilities each month instead of $525. This way her $730 disability check will go a little farther and she may be able to save something for those inevitable emergencies.
We are pretty excited for her. She is a woman who has worked all her life. She is alone with no family in South Carolina. She desperately wants to be able to take care of herself. Because of her disability, she feared she would end up on the street. She is so grateful for this program that will help her keep some independence and quality of life.
We have found a house for her and are in the process of making sure it will pass the inspection. Stay tuned for the next installment.
July 11, 2012
I spend one Tuesday each week sitting at the desk in our parish Outreach Office. It’s a tiny office, just enough room for a small desk, a bookcase, a low, two-drawer filing cabinet and four chairs. The office door opens into the hallway of what is called Bannon Hall.
Bannon Hall is home to the parish office, the Dorothy Day Soup Kitchen, several large and small rooms that are used for various church meetings, religious education, AA meetings, the monthly men’s prayer breakfast, and anything else that may come along. It is a sprawling one story building that is made of cement block. It is well cared for, simple, sturdy and serviceable.
The hallway outside the Outreach Office is about 40 feet long. There are several old church benches that line its walls. When I walk into Bannon Hall early each Tuesday I am greeted by people sitting on those benches who have come with a variety of needs. Some smile at me in greeting, some know me by name and call out to “Miss Sue”. I often sit down on the benches and just get a feel for what is going on before I close myself behind the door and start calling names from the list they have already started.
There is an honor code and people follow it. They are fierce about the order of who signed up on the list and make sure they are seen in that order. While they wait they talk and laugh and visit with each other and with the men and women who are constantly coming in and out of the hallway into the dining room area.
I call the first name and invite that person into my little haven. As I usher the person in, I reach out my hand in greeting to either welcome a known friend or introduce myself to a newcomer. I invite the person to sit down and I begin by asking: “What brings you here today?” And then I listen as each person pours out their heart.
I am privileged to listen to people’s problems. They have come at a vulnerable time in their life and I am there representing hope. They are hoping for salvation – from whatever is burdening them. All I can do is listen as respectfully and kindly as possible.
Today I listened to twenty individuals with life threatening situations. There were abscessed teeth, eviction notices, delinquent utility bills, prescriptions for blood pressure and diabetes that had gone unfilled for days and a notice from the hospital emergency room trying to get money from an unemployed homeless man. Each of these people came wanting help to relieve some pain in their life. They sat in that hallway and waited – some waited for three hours as I listened. They knew their time would come.
As I sit in that chair, I pray for each person in front of me and for myself. I want that person in front of me to feel as though they are the only person that matters at that moment. I want them to know that I have heard what they are saying.
I cannot always offer immediate assistance to people, but I try to help them find options as they struggle with solutions to their problems. Today, I was able to help about half a dozen people immediately and I made suggestions and gave referrals to the others. Today nineteen people left my office with a smile on their faces. As hard as I try, I cannot please everybody.
I have been retired almost three years now. I keep asking myself: ”What is retirement?”
Yes, I am retired from a job with a salary. But my days are full and the rewards are great. Each day I can make a choice about what I want to do, where I want to go, or who I want to meet with. Retirement turns out to be all about choices.
Three years ago, we bought a home in South Carolina. We moved here in June of 2009. The days, weeks, and years have evaporated. We have met new friends, had amazing experiences, and entered our new life with excitement and enthusiasm.
This is the best time of our life. Each day Pete goes off to meet with the people who live in the woods. His people are the ones who are “off the grid”.
My days are a little different. I take care of the home front and some days I go off to the soup kitchen where I meet with a variety of people with a variety of needs. Other days I work at a shelter with an agency that helps men, women and children who are victims of domestic violence. I love that we have the freedom to choose what we want to do and how we spend our days.
Because we live in a small town, sometimes my work at the soup kitchen overlaps my work with the other organization. I walked into a tutoring session with a woman at the shelter, only to have her tell me that I looked familiar. It turns out that I had helped her get her South Carolina ID card when she had come to the soup kitchen. Now I’m helping her learn math so she can get her high school diploma at the age of thirty. She is ready to change her life and get out of the downward spiral that had her captive.
This weekend I was talking to my seven year old grandson about my tutoring experience and this woman’s desire to get her high school diploma. He asked why she had been going to school for thirty years. I explained that she didn’t finish school, she had to leave. Then he wanted to know why she had to leave school before she had graduated. It had never occurred to him that anyone would not go straight through school and also graduate from college.
It is so wonderful that my sweet grandson loves school and learning. He has the great gifts curiosity and intelligence and a family that will always love and support him. The choices he has in life will be unlimited.
The people I have been working with do not have that support network. When they lose a job, or have to leave their home because it is not a safe place, or they get sick and have to go to the emergency room because they have no insurance; there is no one who will take them home and help them overcome their difficulty. They have no options. They don’t know what choices are available to them. Their lives have been so limited by their life experience that they do not have the tools necessary to move out of their situation.
It is my job these days to help people find options. One of the frequent things I find myself saying is “Everyone needs help at some time in their life.” Once they relax, we begin the process of looking at their individual circumstances to see how they can help themselves move into a better place in their lives and their community. It’s all about opening their lives to the possibilities that are out there – the choices that I hope they can make for themselves.
What a magnificent gift it is to have choices.
March 13, 2012
There is a neighborhood I drive through frequently on my weekly journeys. It is long blocks of little brick houses. Windows are boarded up on most of them. Weeds are growing in the yards, trees are grey and dying . There are junk-filled yards surrounded by chain link fences. At first I was horrified by house after empty house. I wondered – could they all be foreclosures? I was repulsed by the ugliness of the desolation. Every so often there was a house that looked like someone might live there – a house with signs of life – a car or an open door.
This is the neighborhood where my friend lives. Where she has found a ewer, better place to live: a place where her roof doesn’t leak, where the cockroaches do not inhabit the underside of her refrigerator, where the rats do not keep her company as she watches T.V., where the drug deals do not go down in her front yard, where the nights are quiet and not broken up with gunshots. She has a new life in this quiet neighborhood.
As I drive through here several times each week, I have come to see it with new eyes. I still see the boarded up windows, the graffiti on the walls, the crumbling doorposts, broken screens, trash everywhere.
But I also see the house with a row of pansies lining the front walkway. The yard lovingly cared for with chairs on the front porch. I see the children playing in the dirt – like children in back yards everywhere – making delicious mud pies. I see the corner house with the basketball net where all the teens are playing ball. I see people in their front yards talking with each other, smiling and laughing with each other. I see the rusted bar-be-que belching smoke, inviting the neighbors over for a shared meal.
I see a neighborhood I’d be proud to be a part of – where people care about each other and notice when a person comes and goes with a wave of the hand or a shouted greeting. I know my friend is happy here. She has decorated her house with curtains and little trinkets from the dollar store.
She gets her disability check and can pay her rent. She has registered to vote. I pick her up each Tuesday morning to take her to the soup kitchen where she spends the morning socializing while I drive people to various appointments. She waits for me to get her after lunch and we do her small errands – get a few dollars so she can buy kerosene, go to the dollar store to buy her few necessities, sometimes get an ice tea and Mc Donalds. She doesn’t get out of the neighborhood unless someone takes her. She has no car; she walks with a cane and a limp.
One day I had to go all the way to York, SC. She went with me because she hadn’t been to York in at least ten years (it’s about 20 miles away). She marveled at all the changes in the countryside.
And always we return to the neighborhood where she lives, the rows of empty houses, the place where the neighbors know each other. And she is happy to be home.
The following is an article we were asked to write for the Oratory newsletter. We thought it might be of interest to some of you. For more information about the Oratory go to www.rockhilloratory.org.
Our God is a God of surprises.
In June of 2009, after several months of prayer and discernment, we packed up all of our earthly goods, said good bye to a lifetime of friends, and drove from San Jose, California to Rock Hill, South Carolina. The first Sunday we were here was just too hectic to get to church, but on the second Sunday we “map quested” our way to Saint Mary’s Church for eight am mass.
We “retired” to Rock Hill with a history of church, campus ministry, youth group, retreat and service experience. We have worked with economically poor for more than 45 years through our own not for-profit called Truck of Love. We have facilitated groups in poor colonias in Mexico and established a children’s day camp on the Tohono O’Odham Native American Reservation in Arizona. We have attempted to listen to God calling us even when it involved Pete’s leaving home in 1997 to be homeless for two months.
So, on July 4, 2009, we walked into St. Mary’s hoping we would find a new community in our new home town. Oh, my, were we surprised!
Greeted with hugs in the gathering space, invited into the church, praying with a community that seemed to really enjoy worshipping together, hearing Father David speak about the scripture – we had come home. Returning the next Sunday to try the ten am mass with the Gospel choir, we were hooked. We found ourselves looking forward to Sundays. Gradually we got involved.
Pete would go to the Dorothy Day Soup Kitchen two days a week. I thought I’d try the Wednesday night religious education class. From those encounters came an invitation to attend a meeting of the St. Mary’s Social Concerns Committee.
We have found at St. Mary’s, the Catholic community of our dreams.
This is what the Catholic Church is meant to be: a community of believers who love each other and their God and show that love in a variety of ways. The Sunday liturgy has also introduced us to the men’s and women’s prayer breakfasts, Thursday night lecture series, the prayer shawl ministry, revivals, and a variety of social gatherings.
Behind it all is the Oratory. We keep telling our California friends about this (new to us) concept of priests and brothers living in voluntary community.
Since our early days in Rock Hill we have reflected on why St. Mary’s parish is different from any parish we have ever belonged to. For us it comes back to the men of the Oratory who have chosen a ministry and a way of living that gives them an intimate experience of life that is relevant to the people in the pews. These men have chosen to pray with, live with and care for each other as the family of God. We have been blessed to witness how they cared for Father David in his last days and how they continued to serve the people even in the midst of their own pain and suffering. We have seen their concern for the poor and vulnerable. We have learned how St. Mary’s parish began and how it was the Oratorians who lived here and listened to the people and helped them create “the Catholic”. We have seen how seamlessly the Oratory and the people of St. Mary’s were able to make the transition with our new pastor, Fr. Joseph. This we attribute to the men of the Oratory who have a common grounding in Christ, social justice, and community.
We thought we were coming to Rock Hill to quietly live out our last years in relative peace. Instead we have found a community that challenges us each day to listen to what God wants of us. A community that helps us to say “yes” to our God of surprises!
I was driving through the neighborhood back to the Dorothy Day Soup Kitchen with “Joe” when we passed the neighborhood bar. I had read in the newspaper that there had been some trouble there in the past weeks.
I casually said to Joe: ”I hear that place is pretty bad.”
Joe replied: “It’s no different than any place. If I jus wanna shoot a couple games of pool and go home, it’s alright. It’s what I make of it. Not mine to judge. Nor yours.”
Whoa – out of the mouth of the wise…
Joe’s been trying to get his life together. We’d just been to the DMV to get a South Carolina ID. They had rejected him and told him all the items he needed to have – come back later. He’d been really angry, but had been super polite to the woman at the desk.
When we left, I praised him for his good manners. He said he’d gotten into lots of trouble in the past because of his temper. He is going to church every Sunday and trying to be a better person. He’s gonna let God be his help.
He talked about how we are the only ones who can help ourselves. It’s all about our attitude. He has decided he wants to have a better life. He’s tired of jail and people who make bad decisions. He doesn’t want to live that way anymore.
He knows that if he keeps working and doing good, God will take care of him.
Today is the second "snow day" in a row. I am here at home accomplishing all sorts of things I have been putting off. I am in my wonderful warm home, surrounded by a lifetime of trinkets from various friends we have encountered and places we have experienced over our 45 years together. Pete and I revel in being in this place and looking out on the winter wonderland that surrounds us. The quiet of the countryside, the birds fighting over the suet feeder I have hanging in the garden – these are gifts that unfold in new and surprising ways each day.
My thoughts keep turning to the people I was supposed to have appointments with these past two days. The people I was supposed to drive to the doctor - the people who have no phone, so I cannot call to tell them I'll not be there.
I think of the man Pete bought kerosene for on Thursday – enough for a couple of days to heat his 800 square foot house. It's now Tuesday, and the can of kerosene must be empty by now. We cannot get to him because our roads are frozen.
What in the world is happening to the people living in the woods? Well, I can only imagine what that is like. Pete just about froze going to our mailbox after almost killing himself on the ice to get there and back.
Last week I had an appointment with the Rock Hill Housing Authority – trying to get an apartment for one of the patrons of the Dorothy Day Soup Kitchen. There are some wonderful people here in Rock Hill who are doing great work. The woman at the housing authority could not have been kinder or more helpful. But it will probably take another 6-8 weeks before the preliminary paperwork and clearances are completed. Then how long will it be until an apartment becomes available?
Tomorrow the snow and ice will be less. For sure on Thursday, I will be able to get back to the soup kitchen. It's gonna be a busy day. There will be lots of folks waiting for someone to drive them to get an ID card or apply for food stamps or go to the clinic for prescriptions. I can hardly wait…
It’s been a long time since I have had an opportunity to think and write for this space on the website.
Since our move to South Carolina, there has been a constant changing. It’s easy to see God’s hand in this because it has been relatively easy. As the months have gone by, my involvement in our church community has increased – specifically my involvement in the Dorothy Day Soup Kitchen.
Last week I sat on the bench in the long hallway outside the dining room. I watched as men and women and a few small children wandered in and out. The kitchen is a place to get in out of the cold as well as a place to find food and some clothing.
I was reminded of Mary and Joseph who went to Bethlehem because of the census. When they were in Bethlehem, it was time for Jesus to be born. Mary “wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.”
Some of the people who come to the soup kitchen are there early in the morning because they have to leave the overnight shelters by 7am. Many walk several miles just to get to the kitchen. Some land on the benches in the hallway and doze off. Others line up outside on the wall where the sun shines its warmth. They spend their days trying: trying to find work, trying to get permanent lodging, trying to stay warm until they can get under the covers again in the evening at the shelter.
It seems there is still little room for the poor.
The following is a recent update from our friends Greg and Kate Kremer:
To all who have been following our story with Roberto and Brenda...
On top of his physical limitations, Roberto has a disorder of some sort that binds up his left or right side occasionally. It keeps him from being able to work on his therapy with regularity. Working on this disorder was not part of our planned work with Roberto. We didn't even really know of it until he arrived. So we were unprepared with funds. But God does provide. We have received free care and testing with the University Medical and Dental Hospital in Newark. What a blessing.
Today we had a meeting with the head of pediatric neurology at UMDNJ. She ascertained, with the help of some video footage we shot last weekend, that Roberto does not have a seizure disorder akin to epilepsy. She is quite certain that he has a motor neuron disorder more like Parkinson's disease. These disorders are very rare in children so there are only two centers in this county that specialize in these diseases with children. One is in NYC and happens to be run by one of her best friends. Immediately upon viewing the video she picked up the phone and called him. As she put down the phone she called a nurse and had the video fedexed immediately to NYC. So now we are being passed from one of the foremost figures in children's seizure disorders to one of the foremost experts in the world in children's neuro-motor dysfunction. We are closing in on Roberto's problem and perhaps solution. Thanks be to God.
If there were an occasion to pray this would be it. There is actually a slight possibility that, if Roberto has a certain disease, he will walk and talk unassisted. Please pray that all goes well and that Roberto is given the gift of walking and talking.
On the homefront we have been working on some major things as well. Roberto has had some real problems with potty training. Brenda has tried everything she knows to get him to go and was beginning to wonder about his ability in this area. She was really downhearted. So we all put our heads together. We came up with... a potty seat so that Roberto does not have to fear that he will fall into the toilet! And we decided to begin trying to potty Tess at the same time. And we put up a chart with Roberto and Tess' name on it. They each get a star for every time they pee! All this in place, the next morning Roberto was sitting on the toilet and Tess walked in. She walked right over to him and put her arms around him and in her very knowing two year old voice said, " I will help you go potty Roberto."
I translated. Roberto peed! We all cheered! He has been peeing since. Seven stars yesterday, six today. He just beams when he goes. God really does answer prayers.
And there are lots of other things to work on. Roberto now has his own walker. When both his legs are functioning he is practicing. He also has a communication device, a little board with pictures. When he touches the picture it says a word or phrase. He is learning how to use it and we are designing the pictures and words to be useful for him. He is still going to physical, occupational and speech therapy every week. We are very busy and are doing well.