Common Threads

The gogo speaks in hushed tones in her native Zulu tongue. I listen, focusing on her expression, as I wait for the volunteer to begin translating her story into English. But even before I come to understand her words, the tone of her voice, the sagging of her shoulders and the sadness in her eyes speaks volumes-- telling the story of pain, loss and struggle that is nearly universal. It is a narrative which has unfolded repeatedly over the last few weeks as I have interviewed dozens of Zulu grandmothers, who form the foundation of so many families in this region of the world. Having lost their own children to AIDS, they are now caring for their grandchildren, struggling to cope and make ends meet. One granny describes her morning in this way.

"I woke up this morning worried about how I would cover the taxi fare to bring my grandson to the clinic. My only source of income is the cakes I bake and sell in the town. This morning I got up at 4am to bake cakes, but before they were finished my electricity had been shut off--my prepaid electric card ran out while the cakes were in the oven. Fortunately the cakes were baked enough for me to sell, so I walked in bare feet the distance from my home to the town, and sold my cakes for a total of 48 rand (approx $7.) I took 10 rand to buy bread and bologna for my grandson to have something to eat today, and I used 30 rand to get him here to the hospital."

While each woman's story is her own unique reality, they are more or less a variation on a theme-- common threads which when woven together paint a picture that is almost impossible to fathom. Loss, grief, and poverty form the bleak backdrop, and overlaid against this is the overwhelming responsibility of caring for numerous grandchildren and other extended family members, many of whom are infected with HIV. Most of these grannies live a distance from the hospital, in one of the surrounding townships, all of which are characterized by high unemployment, poverty and HIV prevalence. They often share a small over crowded home, sometimes with 8 to 10 people living in four rooms, and no meaningful source of income to support the family's most basic needs. Daily life is a struggle for these women, who have already suffered the loss of their own children to AIDS. Rarely are they even afforded the time or luxury to properly grieve. Many only become aware of the diagnosis and cause of death of their children after their passing. Tragically, the shame and stigma surrounding HIV/AIDS frequently silences those who are sick, preventing them from seeking the treatment that might well have saved their lives. One granny tells me about loosing her daughter to AIDS...

"My granddaughter was living with her mother and father when her mother was getting so sick. She died and they buried her by the house. I didn't even know about her illness..., she hid it. I only found out later after she was gone. I found the bag of pills where she was living and I said to myself, "why is she hiding this thing?" She didn't take the ARVs, she didn't even die in the hospital. She died in the house. She didn't get any help."

Left in the tragic wake of their death are the true innocent victims--the AIDS orphans, many of whom are infected with HIV through mother to child transmission. Most have no knowledge of their biological fathers, and most will grow up never having a father figure in their lives. Instead, they will depend on their elderly grandmothers for their emotional and physical well-being, both of which are often in serious jeopardy. Over time the children typically show signs of illness; unable to eat, crying with pain, covered in bodily sores. The local clinic is slow to make a diagnosis, the care at the government hospital is totally lacking and inadequate, and the grandmothers continue to feel lost and hopeless, fearing the fate of her children will come to the next generation.

"When I came here to Sinikithemba with Cindy she couldn't even eat. Her throat inside was red and something was growing inside. I didn't know what I must do because her mother passed away in May 2008 and now Cindy has the same sickness her mother had. I am saying to myself, "oh my god, I am going to lose this one too."

Common threads are woven through the painful stories of these women's lives. Yet amazingly, they find the strength to carry on, sacrificing everything for the children they are now devoted to helping and healing. They have found their way to Sinikithemba, a special place of care and compassion, and with that they've found hope and a reason to rejoice. Sinikthemba is a Zulu word which means "we give hope", and that is exactly what it represents to the lives of these women, and the children they care for; hope for their health and their future.

These grannies arrive at Sinikithemba with little more than their fears, their pain and their prayers. And with the care and skills provided by an amazing team of practitioners and counselors, and financial support from Gift of Hope donors, their lives and those of their grandchildren are soon transformed. They still face enormous challenges that most of us cannot begin to comprehend. But soon hope replaces hopelessness, sickness gradually turns to health, and the color and light previously absent from their lives begins to shine. You can see it in their smile and hear it in their voices and their heartfelt words of appreciation.

"I'd lost hope and was afraid for my grandchild, because he had been tested for HIV soon after my daughter passed away and I was afraid he would follow. But Sinikithemba gave me hope that things would be ok and that he could also live a full life."

Another granny describes how she felt after coming to Sinikithemba and learning her grand daughter would be sponsored for care and treatment through the Gift of Hope.

"I am feeling much better now and when Lungile told me about the sponsorship I said, ' ohhhhh…you are taking all of the weight off of my shoulders. I used to pay for a taxi for Notokozo and myself, and then I come and pay here at the hospital too, and all the money was gone. I don’t know what I can possibly say. I am very grateful and very happy to be here at Sinikithemba. I took her to another government hospital and they didn't do anything. Maybe Nontokozo would have passed a way by now if we didn’t find this place…that’s the truth.
The people from Sinikithemba help me so much. I don't care how far it is from my house I want to come here. I just want to stay here..."

Yes, for me the gogos share one overarching common thread...they are all the true and unsung heroes of the HIV/AIDS epidemic. They give so much when they have so little, and rescue the children they love at a time that they too could use some rescuing. I marvel at their strength and courage, their commitment and sacrifice. And to hear their expressions of hope and gratitude, and see the smile on their faces and the love in their hearts, it to truly feel joy for another person...and no one deserves it more than these gogos.

Thank Goodness It's Friday!

I woke up yesterday morning and my first thought was one probably shared by many hard working people all over the world, including many of you--"thank goodness it's Friday!" But unlike my working days of years past, it was not an expression of relief that the work week was over and the alarm clock would not be ringing come 6am! Yes... I too look forward to sleeping in on Saturday, sipping a leisurely cappuccino at the weekend crafts market, and taking an afternoon walk on the Durban beachfront. But far more important than marking the end of the work week, Friday at McCord is a day I eagerly anticipate --a guaranteed high on the emotional roller coaster ride that characterizes a typical week here in South Africa. Friday, for me, is "baby cap day"--the chance to pass out hand knit baby caps to all of the newborns who attend the ante-natal clinic for their one week and six week check up, and it is truly one of the highlights of my visit each year.

As many of you know, for the last five years a wonderful woman named Karen Greene has been busy knitting hand made caps for the newborn babies of Durban. She started knitting more than 5 years ago, following the loss of her mother. During the week she sat Shivah in her mother's home, she and other family members took all the left over yarn down from her mother's closet and knit dozens of caps for newborn babies in South Africa, while they recalled wonderful stories about the grandmother that had taught them this special craft. It is a story I love to share, as I feel it so poignantly symbolizes the cycle of life, and demonstrates the capacity that each of us has to make a difference. Karen has been knitting for these children ever since...sending off a small package to me every month or two, each with another installment of adorable hats. She is prolific as she is creative, and has brought warmth to the babies, not to mention joy and smiles to their families!

Of course, when it comes to a celebration of hats, most Durbanites would think first of Durban July, a giant costume party with some of the biggest, zaniest and most elaborate hats every seen! But let me assure you, they are total amateurs! They don't know what a real hat party is until they visit McCord Hospital on a Friday morning to see these babies in their first hand made gift, knit with love from America!! It is a sight guaranteed to make you smile,and the funky, fuzzy yarn has become Karen's trademark hat, and is a favorite amongst the junior set in Durban!



This year the party was bigger and better than ever, thanks to the generosity and creativity of some amazing people from the Pepsi Bottling Company, in Somers, NY, who were inspired by Karen's story. Led by the efforts of Rosana Goni and Anita Borgenich who organized an office based knitting campaign for the Gift of Hope, more than 40 women (and a few men too!) knit close to 250 baby caps for the children of South Africa. At the conclusion of the campaign they welcomed me in for a special ceremony, where I was also given a $1,500 donation to the Gift of Hope. The generosity and spirit of service demonstrated at Pepsi is really amazing and I can't thank them enough for their incredibly generous support. Adding their creative output to Karen's, has provided a stock of caps which are sure to adorn the heads of McCord babies for months and months to come.



Many of the Pepsi participants were first time knitters and the creations they came up with were incredible. The colors, patterns, and details were limited only by their imagination, and each had a hand signed message on a small note card attached by string --a lovely personal touch. Although you can see from the photos that not ALL the babies were happy with their new gifts, and a few appeared to be a bit bewildered, most were happy to oblige my
picture taking, and the parents certainly marveled at how adorable their newborns looked.

At one point, as I approached a young mother with my bag of caps, we were suddenly surrounded by a group of young McCord nurses, who each had an opinion about their favorite one for her to choose. After the mom made her selection and I took a photo, one of the nurses said, "my turn, my turn.....I want to have my picture taken with the baby!" Everyone seemed to want to get in on the action.....even this adorable cousin, who swore he was the big brother (despite what the parents told me), and insisted on selecting the hat for his baby "sister" and then posing for the photo with her!




Yes, Friday was a terrific day....more than just the end of the work week, but also a celebration of new life and the generosity of some very special people from home, whose loving hands have knit warmth and love into the lives of South African families! I thank you for the joy you have given to them, and to me!

Against the natural order....

For a grandmother to bury her child must be an unbearably painful experience. To also bury a 13 year old grandson is a nightmare I cannot begin to imagine. Parents are not meant to survive their children. It simply goes against the natural order of things. There are certainly those who view life through a more spiritual or religious lens and understand a loss of this nature as a part of god’s larger plan. For me, that explanation provides no satisfaction and no personal measure of comfort. What kind of god would intentionally bring such pain to a family, robbing them of their child and the child of his future?

These are questions I’ve been struggling with for the last few weeks, since learning about the death of Nkosinathi (not his real name), a 13 year old boy who was being sponsored through the Gift of Hope. I cannot claim to have known this child well. In fact, we only met for the first time just 2 days before his passing, when I had a lovely visit with him and his grandmother. I could instantly see the loving bond the two of them shared. Nkosi told me of his dreams for his future to become an artist—a future which he will now, tragically, never know. Perhaps it was the timing of this sudden turn of events which caused me to react with such profound sadness. Or maybe it was the thought of his granny, who loved this child so much and devoted herself to caring for him. How much loss could she possibly bear? Wasn’t the death of her daughter,(Nkosi’s mother) more than enough suffering for one lifetime? Or perhaps it was simply because he was just a child and children are not meant to die.

Whatever the reason, Nkosi’s death hit me in a very personal way, and when I learned his funeral was last Friday I knew I wanted to be there. It was important to honor his memory and pay my respects to his grandmother, and also to be there as a surrogate for his American sponsor, who was so genuinely pained by the news that she offered to help cover the cost of his funeral. And symbolically, I also thought of this as an opportunity to pay homage to the thousands of anonymous children who, like Nkosi, have tragically had their lives cut short by HIV/AIDS.

So I joined three of the counselors from Sinikithemba for the drive to Umlazi—a poor rural township where Nkosi lived with his granny, sister and other extended family members. I cannot say enough about the character and compassion of these women, who make it their life’s work to help support children and their families who are infected and affected by HIV. They treat the children with such extraordinary care and compassion, and are so vital to the overall success of the Sinikithemba pediatrics program. I personally don’t know where they find the internal fortitude for this job, as they regularly witness pain and illness, and sometimes the death of a young child from AIDS. Thankfully, in the last 10 years, with the tremendous expansion of anti-retroviral therapy, the loss of children is a far less common occurrence. Nevertheless, even ONE such death is one too many. Although we did not discuss this directly, in my heart I knew we were all making this trip for the same reason…… to let the granny and extended family know that our care and our support did not end with Nkosi’s passing.

On our way to Umlazi we stopped off at Makro, South Africa’s version of Sams or Costco, and filled a grocery cart with food provisions—large bags of rice, potatoes, maize, carrots, onions, sugar, long life milk, cans of beans etc. There was little we could do to ease the family’s pain, but perhaps we could be of some help by providing some food and nourishment, and easing their financial burden.

We made the 40 minute drive to the white church, which sat perched on the hilltop, surrounded by modest homes and tin shacks, which tell the story of poverty in this rural area of Kwa Zulu Natal. The church was a simple structure,--one open room with white washed concrete walls and a few colored stain glass windows, alongside other broken panes of clear glass. Inside were rows of plain wooden benches, followed by two steps which led up to a pulpit, adorned with a cross and several bouquets of flowers that had been added for the occasion. It was not a grand or impressive church, but was certainly a place of great importance and reverence in this community of Christians, who rely heavily on their spirituality and faith, particularly at a time of loss.

I stood with the other counselors from Sinikithemba, lined up outside of the church alongside a small group of people who had arrived before us. Some chatted in quiet tones—others stood by in silence, as well all waited for the family to arrive. More guests started to drift in and soon a white hearse pulled up the stone driveway, and through the front window I could see gogo’s frame. A feeling of sadness overwhelmed me when I saw her being helped out of the car. She appeared so much older and frailer than when I saw her just 10 days earlier, when she had stood tall and strong as Nkosi leaned on her arm for physical and emotional support. Now sapped of her own physical and emotional strength, she leaned on the arm of her daughter as she made her way to the front of the church, waiting for the small white casket to be wheeled in ahead of her. Close behind followed her extended family, clinging to one another, while shedding tears that spoke of the pain of recurring loss.

Soon the church was filled to capacity—neighbors, friends, family, teachers, church members and the 4 of us from Sinikithemba. More than likely I was the least familiar face in the room. Yet, as the only white person in a room full of Zulu people, my presence could hardly go unnoticed for long. Granny was seated perpendicular to me but just a few rows away and I was following her gaze, as she stared toward the floor, as if unable to look ahead at the casket. I found it difficult to bring my eyes there as well. It was the first time I had been to a child's funeral, the first time I had seen a casket of such tiny proportion, and the first time I would later stand at a graveside while a granny sprinkled dirt over the casket of her 13 year old grandson. All of it was against the natural order of things....although sadly far more common for the world in which this granny lived.

Soon she looked up and glanced around, searching the room for family and friends. The moment she spotted me, her expression changed; first a brief look of confusion, as she processed who this white woman was sitting just a few rows away from her. Then her eyes opened widely, showing both her recognition and her surprise to see me there..and then, the faintest of smiles. She nodded her head, signaling she knew me, and her eyes filled with tears. I returned her gaze, and gestured to her with a nod and my hands crossed by my heart, in an effort to convey to her my heartfelt sympathy. We did not speak the same language and we had not exchanged any words, but her face told me that she understood my message of support and sympathy. I barely knew this woman, but in that moment of non-verbal communication I knew my decision to come to the funeral was the right one, and that it had deeply touched her.

Seated next to granny was her daughter, (Nkosi's aunt) and the two began talking quietly amongst themselves, looking back in my direction at one point. Moments later her daughter got up and came to where I was sitting. She leaned over and in quiet tones of Zulu which I did not understand, she spoke to Sizile, , one of the Sinikithemba counselors, who was seated next to me. Sizile turned to me and caught me totally off guard “they would like to know if you would like to speak.” Sizile saw my look of confusion, unsure of exactly what they were requesting. “They would like to know if you would like to say a few words about having known Nkosi”, she repeated. I paused, feeling both surprised and somehow honored, and I did not feel that this was a request I could decline.

And so, following lengthy remarks from a neighbor, school principal, Sunday school teacher and spokesperson for the family, all of whom spoke in Zulu, I was called up to say a few words. A brief murmur spread through the church, as I stood up and walked to within a few feet of the grandmother, directing my gaze at her. I was little more than a stranger—a white woman from America, rather out of place in a church filled with a community of Zulu people. What could I possibly say that would be of any meaning or comfort to the grandmother and her family? I began somewhat tentatively, pausing after a few sentences for one of the clergy to translate into Zulu. I could tell however that many in the church understood my English, as there were audible “ahhs” and “hmmms” after many of the thoughts I expressed. I began with candor…saying that I was an American who had only met Nkosi and his granny once, just a week earlier, when they came to see me at McCord Hospital, where I come each year to volunteer. Although I certainly didn’t know him like most of those who were in attendance, I was able to see, from our one conversation, that he was a sweet and gentle boy…intelligent, and talented. But more than anything, I went on to emphasize, I could see that Nkosi shared a special and loving relationship with his grandmother, who took such good care of him. And Nkosi, in return, loved his family. I recalled the story that granny had shared with me about how he loved to serve his entire family a breakfast of fried eggs, fish fingers and Vienna sausages. His sister began to softly cry.

I continued, my own voice starting to break, telling everyone about the joy I had during that one meeting of delivering a gift from Nkosi’s American sponsor—a handsome wrist watch, that caused Nkosi to burst into a big smile and say, "I feel so happy.” It was perhaps the only smile and only happy moment in the last few days of his life, when he was so close to death, and I had been able to capture it in a few photos, which I had blown up and laminated. I told the gogo and her family that I wanted them to have those pictures, so that they could always remember Nkosi with a smile, in that moment of joy that we had all shared together. I expressed my deepest sympathies, wished the granny strength and comfort from her loving memories of Nkosi, and then handed her an envelope of photos before giving her a hug and kissing her cheek, now wet with tears. She hugged me back, said thank you, and then dropped her head and cried and cried. One row behind her sat Nkosi’s sister, who was now sobbing uncontrollably.

I returned to my seat and gazed towards the family and then the small white casket, feeling a pang of sadness and defeat that the hope we tried to bring to this family with our sponsorship support was simply not enough, and another child had been lost to the HIV/AIDS epidemic. But I also felt some small amount of comfort that Nkosi’s grandmother understood I was there for more than the monetary support or the coverage of Nkosi's medical costs. I was there to let her know that people far away, from a different culture and language,and with little knowledge of or experience with HIV, had CARED...had wanted to help and wanted to make a difference. Sometimes, when life goes against the natural order of things, that is simply the best we can do.

July 7th---A day to celebrate life!

July 7^th, 2006. It was exactly five years ago today, and less than two weeks into my first visit to South Africa. It was a day I have marked in my calendar and in my mind—a day in which I celebrate the power of hope and the miracle of life, and one in which the generosity of the Northern Westchester community forever changed the fate of a South African child.

July 7, 2006 was a day of new beginnings. It was the birth of the Gift of Hope program, and the day that Charmaine Goba was born via cesarean section—paid for with the generous donations of my friends and neighbors at home. I was there to witness that birth; standing under the bright lights of the operating room, dressed in green surgical scrubs, and holding the hand of a nervous mother. Nonhlahla Goba was HIV positive and with a staggeringly high viral load, fearful that she would transmit the virus to her newborn baby. Like many other Zulu women, she dealt with her fears and her delivery without the presence or support of a husband or partner. Instead, she had to rely on the comfort of a total stranger in what was a deeply personal and very likely frightening moment in her life. Although it was a unique privilege for me to serve as her birth partner, I have always felt a certain amount of sadness that Nonhlahla’s situation created the need for my participation on this very important day in her life. But it did, and I am grateful for what it has meant to all of us.

July 7, 2006 was also the day I first met a remarkable woman named Betty Goba-- Nonhlahla’s mother-- who had the wisdom to bring her to McCord hospital when she went into full term labor. Our lives intersected in a random way on that morning, yet left a profound impact on both of us. 5 years later Betty recalls it all with total clarity.

“The way Nonhlahla was sick I knew that McCord was the best hospital around. I knew I didn’t have money and I just asked god that the hospital would help in anyway needed. We came to McCord and Nonhlahla was in labor and we didn’t have the money for all the procedures to deliver the baby safely. We met you and you helped pay for all the hospital costs. Fortunately, I met you in the right place and at the right time, and because it all happened by chance I believed that god was there to answer my prayers.”

Betty goes on to tell me how happy she was that I served as Nonhlahla’s birth partner, an experience which proved to be the foundation of a very special bond between myself, Charmaine and her family. “ I was so happy that you were a birth partner. That is why I say that Charmaine is your granddaughter, because you did everything that a grandmother could do for the grandchild. You were the first person to see Charmaine coming from her mother’s womb and then you came to show me the child.”

I recall with equal clarity not only the day Charmaine was born, but an early morning in mid-August, some 6 weeks later, when all of our collective prayers were answered. I was fast asleep at my home in Vermont, enjoying some time with my family after my return from South Africa, when the phone startled me awake around 5am. The accent on the other end of the phone took a moment to recognize, but soon I knew I was hearing the voice of Sandy Reid, one of the PMTCT nurses at McCord. She could hardly wait to phone me with the news we had all hoped and prayed for…Charmaine Goba was HIV negative! I screamed with joy and woke up my entire family in the process, and we all celebrated the fantastic news. I will never forget that.

Betty recalls her own reaction at learning the news. “ I was extremely happy about those results because I expected the child was going to be positive since her mother was positive, and I wondered how it could happen that she was negative. I was so happy for those results and I thank god for that.”

Today, July 7, 2011, Betty continued to thank god, as we both celebrated the 5^th birthday of Charmaine! We opened presents, sang songs, took photos, and I shared memories and stories with Betty, who is now Charmaine’s primary caregiver. Tragically, Nonhlahla never sought the treatment she needed for her HIV, and died shortly after Charmaine’s first birthday. Unimaginable as it is, Nonhlahla is only one of the 4 children than Betty has buried due to HIV and AIDS related illnesses. Of her 5 children, only her 18 year old daughter, Happiness, is still alive and she too recently learned that she was HIV positive. Having learned from the painful outcome of Nonhlahla’s mistakes, Happiness is being treated with ARVs and getting the medical care she needs to stay healthy.

It has not been easy for Happiness. With the painful loss of her 4 siblings, she has been forced to drop out of high school and stay at home, unable to afford her ongoing school fees, and needing to help out at home. But Happiness hopes to return one day in order to complete her studies and pursue a career in the hospitality industry. She dreams of opening her own restaurant or doing something involving cooking, which she loves! Until that time she cooks and bakes at home for her family, and is focused on staying healthy and finding the financial means to return to school one day. She explains to me why that is so important to her.

" I have to go back to school for my sisters and for my future. If my mom passed away there would be no one to look after me. I would have to take care of myself and my granny's children."

Happiness also knows how important it is to stay on her ARVS, not only for her own future, but for her mother as well. Betty depends on her, as she is helping Betty raise the 10 grandchildren that have been left behind as AIDS orphans. (Betty has made sure to test them all for HIV and only one 5 year old boy is positive; he is now being sponsored for care at Sinikithemba through the Gift of Hope.)The 12 of them live together in a 5 room house, and just barely manage on a monthly child support grant of 1000 rand (or $148 USD), and a modest pension which Betty will begin to collect in March when she turns 60 years of age. Yet far more striking than what Betty lacks, is the power of what she possesses---an amazing inner strength to keep going in the face of so much loss, and a passion and commitment to raise these children with care and love and a sense of joy. One need only spend an hour with Charmaine to see how this joy has been imparted to her.

Charmaine simply OOZES with happiness! There is joy in every expression and gesture of this child; from the warmth of the hug she greets me with, to the sparkle in her big brown eyes and the broad smile which illuminates her lovely face; to the way she sings and dances spontaneously, without so much as the sound of music to get her moving! With all the loss and sadness that Betty has known, Charmaine and the other children she is raising bring her some measure of comfort and joy. I can hear it in Betty’s voice when I ask her to tell me a little about what kind of child Charmaine is.

“AAAACCHHHHHH Charmaine”, she says, “she is ALWAYS happy…always! She is always smiling, laughing—she is a happy , happy girl! She is always happy at home and even at school. She is bright at school,, and very neat. She just acts like a big girl. She really likes herself!”

I smile as I hear the pride and joy in the words of a granny. I can not think of anyone who deserves this bright light shining into a world which has brought so much darkness and despair.

Today is July 7^th…a day that I will always pause to celebrate hope, and life, and the power we all have to make a difference in the global fight against HIV/AIDS. That hope is embodied in the life of a special 5 year old girl, named Charmaine Goba. May she live a long, healthy, happy life filled with many more birthday celebrations, and may she continue to bring light and joy into the life of her wonderful, dedicated gogo!

Happy 5th Birthday Charmaine!!