The Broken Hearts Club

I recently joined the Twittersphere. I cannot give a verdict on it yet, as I am still learning the language. For quite a long time, I was disenchanted with it and thought of it as a series of “instant status updates,” rather ridiculous and unnecessary, to reference a term from yet another social media experiment. The more I search and “follow” people and see that people I do not even know are “following” me, the more I am amazed at how people are searching for affirmation, acknowledgement and connection, and how giddy they will get if a public figure replies to them. It is also fascinating that there can be this indirect-yet-direct communication between individuals who perhaps would have zero association otherwise. For me, being so far removed from US culture, it has been a fun new way to access and receive links, quotes, information and photos from organizations and people I admire. And, I admit, I found it rather awesome when a celebrity responded to a tweet I had sent! The most awesome part about it was that it had nothing to do with celebrity, but everything to do with current events and issues facing the global population. Specifically, it was that she shared an article on the Haitian death toll after Hurricane Sandy and was being criticized by a young American who felt that “we Americans should look after our own first, and worry about other countries later.”

I wrote a blog post last year about my near run-in with a Kardashian, and the definition of a beautiful person. In my short tenure with NPFS, I have met a few celebrities, and am impressed that the genuineness of their intent, or lack thereof, is quickly obvious. To those who are truly interested in understanding the people, culture and needs of Haiti, and in drawing attention to our global citizenship, these visits are not about a photo op, but about lives. The lives of little boys and girls who jump into their arms and want to know if said individual knows Creole. The children who ask again and again if I have a mommy and a daddy, and if I got to go to school, and how the airplane that is taking me on a trip is able to land without hitting all of the houses underneath it. The children who write in beautiful cursive and painstakingly copy pictures, not believing me when I assure them that coloring outside the lines is ok! The children who get to attend secondary school for free, in a country where over 80% of the population will not complete 6^th grade, because a group from the entertainment industry saw what Fr. Rick has been doing here and wanted to work with him. The children suffering from the horrendous disease of cancer but who can still smile after a blood draw or IV placement is finished, whose eyes light up in response to my greeting.

I mentioned in the previous post that the heaviness, much more than the lightness, which comes with this experience has been much more present to me. The light moments are still there, such as a shared laugh this morning with my brave little friend who yelled, “Bravo!” when I told him his picky was finished, then immediately stopped crying and demanded a well-deserved piece of candy. The humor and faux-defeated look in the teenager’s face when I caught her off-guard and sat her down for a forced hair-washing session.  (Two months without shampooing was long enough, and the silly girl bragged about it – she was asking for an intervention!) Sherlin’s portrait of me (see below). The fact that everyone in the cancer ward now calls me “Bibbitte,” thanks to the little boy who cannot pronounce “Brigitte.” The early mornings with the two boys who work tirelessly at our volunteer kitchen, as they tease me about my coffee intake and get me to laugh out loud, no matter how poorly I have slept. The smile that comes to my face as I watch the cows cross the road, and I notice that the mother cows stop, turn their heads to block their babies from crossing, check that traffic is clear, then proceed. Sitting with Steven, who is fighting a septic infection, as he places his hands in mine and tells me with a smile, “Your hands are so warm.” The joy of sharing long-awaited news with our kindergarten principal, that she is finally pregnant. Her disbelief and the energetic hug I receive when I repeat that, “Yes, it’s true! I will start calling you mama!” 

Brigitte, according to Sherlin, aged 8

Sitting with the bravest of the brave

There are times that the immensity of the poverty here and the weight of this experience literally take my breath away. The clouds of burning trash are becoming more frequent and acrid. The crises which come each day to interrupt even the most flexible plan are constant. Death is never far away, and comes from conditions which could be cured from a simple doctor’s visit in the States and a prescription.  

I held the hands of an 11-month-old girl who arrived to the oncology ward much too late, and on the last day of her life, we shared a few moments’ gaze as I kissed her fingers and massaged her flaccid arms. Several young children’s bodies have been found in the fields surrounding the hospital, likely left there by panicked mothers who feared the reprimand of others because they could not transport their sick children to us in time. The sadness is palpable, the desperation visible. Attempts to empower are met with frustration and confusion. The desire to dignify and teach is pushed aside by the demand for a quick fix and continued culture of dependence. The deficits and disparities are nauseating, the scale of emotions and amount of energy spent each day excruciating. The threat of famine now sits over this country, as 90% of the agriculture grown on the farms in the south and west was destroyed in Hurricane Sandy. What took years to create will take years to change and undo. Thousands of moments each day, I must pause and remember this as I yearn to demonstrate compassion, patience and understanding. 

There are still those who believe that Haiti should die, and who are unafraid to express their vehement hate under the supposed disguise of the internet. But we are commanded to love our neighbor as ourselves, and I believe that includes a global responsibility. Respect, in my eyes, is a right, not a privilege. We are all called and moved by different causes, and we have a responsibility to give generously toward those causes in the ways that we are able. Some of us are called to work locally, others internationally. I am moved every day by the numerous opportunities I have to choose love, and I pray that I meet that challenge. It is easy to look back at night, and to think through all of the tasks still left undone. But it is critical to our survival here to look beyond those, and to cherish the unexpected moments (and believe me, those are countless!) which provided us the chance to dignify, to listen, to embrace, to give, to laugh and to be present to those we encountered. 

An afternoon walk with a few of my oncology kiddos

Sweet Valson, thriving at the Kay Germaine school

Just a little chat with my girl Erline

 The pain of the distance between here and my home stateside is especially acute in seasons of loss and grief. I learned of the passing of a young hero who shares my name, Bridget the Brave.  Some dear friends have learned that their child will be born with a broken heart. Another friend is suffering greatly with serious illness. I strive to be practically available to those I love when they are in need, and to be so far away and unable to do so is excruciating. To let go of that ability and to trust that my love and friendship can survive without being personally present is not an easy concept for me. I love to give, in word and in deed, and the separation tears at my heart and mind. So, I walk to the places where I can be present, witnessing the bravery of young cancer patients and watching the little ones at our Angels of Light homes grow and thrive. I enter the gate, hear my name and hug the little one who rushes toward me with all of his might. I sit for several minutes holding Steven, warming his hands with mine. I listen to the nurses as they passionately share their observations about how the clinic still needs to improve. I bring extra bobby pins to the hospital for the afternoon so Nellie can braid my hair. I rejoice when Kevin smiles, a rare occurrence, and watch him grow in confidence as the days pass and his appetite returns after his course of chemotherapy.

This world is broken; our hearts are broken as well. We see evidence of this on a daily basis. Our heartbreak may be physical, emotional, or spiritual. Some of us try to avoid facing it; others tend to dwell on it incessantly. We are often quick to give an opinion as to why we suffer, to place blame and to divide, but we are not so willing to sacrifice or work for change. My challenge to myself during this season is to examine my heart, to be genuine, to exercise passion and discernment, and to be the love to those around me that I so crave to have. In loving others, in giving to others, in listening to others, in being willing to understand others when we are tempted to judge them, in encouraging honesty, we can begin to heal the brokenness.

Elie Weisel said, “The opposite of love is not hate, it’s indifference.” May we choose to rebuke apathy, and in doing so, choose to feel, act and love generously and genuinely. In turn, we can induce change and find peace.

Christmas Wishes

I have felt recently that there is so much I want to say that it impossible to say anything. This experience is such a mix of the heavy and the light ... and the heaviness has been more prevalent of late. So as I continue to find the right words to share, here is the Christmas message from Fr. Rick Frechette, Country Director for NPH Haiti and Director of the St. Luc Foundation.

 

 

 

Once upon a time, in fact more recently, there was a young boy who was brought to us malnourished and sick.  His name was Jean Tony. Sadly, we see so many sick and malnourished children, that it was not his condition that made him stand out to me; rather it was because he would just sit and stare and never say hello when someone passed by him. At the end of very long days, as I plodded to my room exhausted, he would not say a word as I went by.

 

Finally one night I said, “Why don’t you ever say hello?”

He said, “to who?”

I said, “to me, and to whoever goes by!”

Jean Tony said, “I didn’t see you go by. I am blind!”

 

I learned that Jean Tony is recently blind from degeneration of his eyes because of lack of vitamins, and he has not yet learned the many other ways to “see” that people who cannot see develop over time. So I sat down next to him, on a chair three times too small for me, and we started to chat.

I could see right away Jean Tony was a cheerful boy, curious and playful. When I asked a number of questions about his blindness so I could understand it’s onset and his chances of seeing again, he said to me: “Why are you asking so many things about my eyes? Everything else I have works!”

 

I was astounded. What a beautiful focus. What a phenomenal spirit.

 

Our continued chats were always marked by curiosity, wonder, cheerfulness, and enthusiasm.

We soon became fast friends, he with me because I brought him a harmonica and a trumpet and other small treasures.  Me with him because I wanted, and needed, the energy of his beautiful spirit.

His spirit is a gift to him and a gift to me, A gift of grace.

 

Today, the feast of St Nicholas, is a good time to think about gifts. Christmas is rapidly approaching.

Ancient spiritual writers tell us that the full Christmas story has three parts. The first and the third are seen with the eyes. The middle part we will never see if we are spiritually blind.

 

The first visible part is the birth of Christ among us, as the one who saves us from the sin, ignorance, darkness, and evil that is around us and can be in us. He is Savior. He is also Redeemer. He pays the price, first for us and then with us, so that we can live as children of light.

 

The third part of the story, which according to the scriptures will also be visible to the human eye, will be the deliverance of all Creation to God, the last days of universal salvation,

 

What is the second part, which is invisible and cannot be directly seen?

 

The second part is us, the second part is now.

 

We can be governed by light, or we can be governed by darkness. It is our choice. No angelic choirs in the sky, no triumphant return upon the clouds. Just us, and our choices – if we place our lives in the hands of Emmanuel, “God with us”, God invisible.

 

We are the middle days of Christmas. We are the “miracle in the middle”, the time in between Incarnation and Last Fulfillment. The trouble is that we can be quite blind to the middle days of Christmas. The physically blind Jean Tony is not. But we can be.

 

Just as Jean Tony was made blind by lack of nutrients, we can be made blind by so many things: by anger and hatred, by jealousy and prejudice, by greed and power-lust, by arrogance and non- forgiveness. We can be swallowed up by care and concern only for ourselves, which leads to apathy.

 

Apathy is the biggest blinder of all. Apathy is a very simple stance:  “I don’t care.”

 

“I don’t care” about someone else’s problems. I have my own. I don’t care about the poor unless they are the poor of my neighborhood. I don’t care to hear the silly chatter of a small blind boy.

 

Conversely, we can be people who see completely, and care fully.

 

What do you want for Christmas?

 

I wish for the spirit of Jean Tony. I wish the cures to hatred, pride and all the destructive blinders that keep us from being children of light. I wish wisdom, peace, love, friendship, faith, and hope. I wish for peace on earth and good will in all people.

 

-- Fr. Rick Frechette

December 6th, 2012

In Thanksgiving

I am sitting here in the comfort of my little sister's living room, listening to the Christmas music that is ever-present whenever either of my younger siblings is in the vicinity (starting in August, usually) and smelling the turkey as it cooks. It is hard to imagine that just a few days ago I was in the midst of a hysterical crowd of grieving relatives as they followed their loved ones to the hospital morgue, then dashed home down the dusty road against the vehicles speeding by, politely declining the motorcycle taxi drivers, and hastily packed a bag to return to the US for a week's stay. After an absolutely gorgeous series of flights piloted by a generous volunteer doctor who makes monthly visits to the St. Luc hospital, I met my sister and am getting acquainted with Athens, GA, her current place of residence. And the simple luxuries of American life have embraced me - a comfortable bed, delightful hot showers, raking the crunching leaves, weather suitable for layers and space heaters, amply-supplied grocery stores, quick phone calls and texts to stateside friends, the hilarious dynamics of five adult family members sharing a small living space, a pleasant and low-key canine companion, a fabulous haircut, new old clothes, wireless internet, Pandora playing via computer.  A few hours airborne takes me from one world to quite another.

Rather than go all verbose this time around, I will show you just a few of the moments and people for which I am grateful.

My friend Genessa, who I met during my first trip to Haiti. Here we are with one of our patients, who was transferred to the US soon after arrival at our field hospital. Genessa has inspired me to be courageous and step out in faith.

My sisters, Christine and Margaret. (I'm the tan one!) As one uncle put it, we would make a great sitcom - probably true!

Stanley, aka Mr. Sunshine. This kid is happiness personified.

My beautiful friend Amy, who encouraged me to embrace faith instead of fear and continues to do so. Here we are with just a few of my entourage!

The determination of the Haitian people: Haiti will not die. Haiti cannot die.

The babes! 33 of them in all - there is nothing like hearing your name chanted by these little voices.

A typical greeting upon my arrival at St. Louis

Beautiful Erline, my girl. Her transformation has been amazing.

Maxuel, who has become more and more brave.

My awesome roommate Dani, who above all things reminded me not to take things too seriously! And introduced me to Harry Potter.

Amazing countryside

Christo, and the many other little heroes who are fighting cancer with everything they've got. Their smiles melt the heart and belie their serious illness. These are the bravest of the brave.

A new clinic, with two of my three colleagues! They have accepted me with humor and grace, and are great learners.

The Caribbean Sea. 

This is just a sampling - there are countless other moments and people that have impacted me over the past eighteen months. Thank you, followers of my story and encouragers of this journey, who have supported me in a myriad of ways and have allowed me to serve. Your support is beyond measure. Happy Thanksgiving - may we never forget to be grateful!

Thoughts on a Sunday

That saying, “Years go by like days,” is hitting me quite hard lately. Although, I would wish to add, “Days go by like years.” My head has been heavy and inundated with the enormity of moments I have experienced in these past weeks. I have had this particular blog post in mind for quite a while, and each day I have put off writing it another paragraph’s worth of thoughts is added!  So sorry, dear reader.  

It is hard to believe that only a week ago, we were venturing out from under the floods of Hurricane Sandy. To see the pictures of her devastation in the States causes my heart to hurt even more. We here at NPH were spared her worst at our immediate facilities, but numerous staff and family of staff were greatly affected by the massive rains and winds. When asked if this was worse than Isaac, which hit in August, the reply is, “Isaac was nothing compared to this!” Those most greatly affected were living near rivers or in the tents. We have already begun to see drastic rises in the numbers of cholera cases, as patients arrive at the hospitals here in Tabarre and in Cite Soleil. Thanks to my fabulous former roommate Dani, several containers of IV fluids were donated to us earlier this year and will greatly assist in the massive rehydration which is critical to save a patient’s life. 

One of my friends asked me, “How was your adjustment period?” when she only recently learned that I have been living here for the past 15 months. I thought about that question, and I will definitely hold to the position that every day continues to be an adjustment. And that is as it should be. If I were to dare state that I understand the culture and people of Haiti completely, after only this short time here, I would be committing serious error. Numerous learning opportunities and moments of adjustment are presented to me on a daily basis. Just as I cannot fault my friends in the States for their inability to relate to my experience here and understand as I would wish them to, I cannot fault the Haitians for cultural nuances which are counter-intuitive to me, or for instincts I may possess that are not natural to them.  Here in Haiti, crying is seen as a weakness or an infantile behavior, whereas in my experience it is seen as a healthy release of emotion. Little children crying in response to physical or emotional pain, or mothers weeping when they learn their child is in a terminal state of illness, are quickly hushed and told to be strong. This is not out of purposeful rudeness, but most often based in years’ worth of forced fortitude and mind-over-matter thinking in the face of nearly constant hardship. When I was able to check myself and remember this as the little kindergarten boy wandered and sobbed on the patio of his classroom, and when I scooped him up and sat with him and was able to identify the source of his fear, I was relieved. Ten minutes of snugging and quietly calming down, along with a few assurances that since his mommy remembered to come get him after school yesterday, she would most definitely come today as well, were what he needed in order to return to class. And perhaps, as they watched us, the teachers were able to see how that few minutes of attention and validation was helpful. They must not be criticized for something they do not know to do – lack of knowledge is NOT the same as ignorance. 

Just the usual hanging out and posing during recess ...

 I am both blessed and overwhelmed to be working with the only pediatric oncology program in the country. Time is marching quickly by as I continue to learn the subtle and not-so-subtle differences in the culture of patient care. What will never cease to amaze me is the resourcefulness of the Haitians. I remember this distinctly, as it struck me during my many trips to Nicaragua, and perhaps most evidently, in my first journey here in the days after the earthquake. The ability of the medical staff to think creatively in terms of using what is available to them to the absolute furthest extent possible (we Americans might call this an "off-market" purpose) would trump any number of Stateside colleagues. The real limitation I see here is the concrete thought process that has been present for so many years. The nurses are tremendous, but have not had exposure to or experience with critical thinking. They work with protocols and point-to-point orders. An easy frustration for a foreigner is the matter-of-fact answer one will likely hear when trying to examine a point more deeply: “This is how we do it, because that is how we do it.” A huge challenge for us as visitors to this country, who wish to empower her citizens, is to create and maintain a trusting environment and to develop a relationship which fosters understanding. By openly and quickly criticizing things we do not understand, we paint ourselves as fools. The nurses often laugh when I share from my experience, because such concepts as I may mention are so foreign to them. But when we are able to talk more openly and they begin to share from their perspective, we often find that we are much more similar than they initially thought. They crave learning and have begun demanding that I teach them more! That is my task for this coming week – the commencement of educational seminars.  I would not have wanted to start this any earlier. I have talked before about how important relationship is in this work. I must wait, be consistent, demonstrate professionalism, validate the nurses’ experience and education, and receive their freely-given permission, before I attempt to share or suggest alternative methods of patient care. 

The moments of intensity have been somewhat balanced by much lighter ones. One of my newest buddies in Oncology, Christo, calls me “Bibbitte,” because he cannot say “Brigitte!” My fabulous nurses at the FWAL clinic call me just to say hello and check in with me. One of them, who has a famously large appetite at any time of day or night, shared a great laugh with me in the midst of the hurricane, when she told me her only complaint about being trapped in her house by the walls of water was that she was hungry! The FWAL kids were completely wowed by a Skype conversation with one of my closest friends, and literally wanted to hand her gifts through the computer. Needless to say, carrying on a Skype conversation while surrounded by about two dozen little people is essentially impossible, but they loved it. The women in the kitchen at FWAL make me delicious coffee in the morning and make sure that whenever they are cooking corn meal with bean sauce, that I have a very large plate of it. The kids in Oncology are enamored with the walks I take with little ones crying from the pain of the chemo meds as they enter the bloodstream. I spent a wonderful hour with Angie, slowly roaming the halls as she tucked her head against my shoulder and kept motioning, “again,” as we approached her room. And I was once again reminded that coloring is pretty much the perfect therapy for a case of the “Mondays.” Emerson, age eight, now finds me every day I am at FWAL and asks me to please take him home with me! The kindergartners call my name when they see me walking, and they wave enthusiastically when I meet their gaze. I invite you to visit anytime you are feeling the least bit down, and to try to remain standing as the hordes of little pre-schoolers lovingly attack you with shrieks, smiles and laughter. 

Camera! Quick everyone - attack!

This past Thursday and Friday were the Days of the Dead here in Haiti. They are the feast of All Saints and All Souls in the Catholic Church. On the 2^nd of November, the Haitians often travel to the cemeteries and hold ceremonies for the dead, praying to the Loa of the Afterlife that their loved ones be given permission to enter. As has been the tradition in the recent past, a large group from NPH/St. Luc traveled to Titanyen, the site of the mass graves holding the hundreds of thousands buried so haphazardly out of necessity. Titanyen is also the site where Fr. Rick and a group of volunteers have faithfully honored the impoverished dead with a dignified burial, nearly every week for the past eight years. Our group was joined by the Missionaries of Charity and several children from their home here. This year, a change was the large contingent of Haitians from the local community who walked toward us, perhaps out of curiosity, perhaps urged by something more. A strange development in the last year has been the construction of many homes on the Titanyen land, as the desperate from the tent cities and still displaced from the earthquake or other events are finding a free place to live. It was a bit disconcerting to see houses on the land which contains so many bodies. But as the mass commenced, their reverence was palpable. Fr. Rick spoke of the violence of death which so many have suffered in the traumas of the earthquake, cholera and disease, the humiliation of poverty, and how so many of our brothers and sisters have been further humiliated even after death with such violent and random burials.  We were reminded to pray that a swift and peaceful journey into Eternity be granted to each lost soul. And an amazing event occurred as the service ended. Every person in attendance was given a candle to represent the Light which calls us Home. As the sea of little lights grew, the Haitians standing with us turned and walked toward the graves of the most newly-buried, praying and singing while tenderly guarding their flames. They then placed candles on each gravesite, constructing small fortresses for them out of nearby rocks and continuing to chant for their beloved dead. Grief and solidarity transcend language, and I stood speechless at such a beautiful act of service. The world grew just a bit smaller at that moment. As we said our goodbyes, the tears brimmed in my eyes as I was once again humbled by such extraordinary company. I am a truly blessed girl to witness such moments as this.

May peace, dignity and wholeness, which they were denied in life, be theirs in death.

Hurricane Sandy

Just a quick update for you all: Hurricane Sandy has pummeled Haiti, arriving Wednesday, and has stayed around for two days now. We in Tabarre are safe and as comfortable as we can be under the circumstances! I am grateful for a dry, sturdy home to sleep in and we are being catered to by our Haitian counterparts, who are working hard to keep our elecricity and water going and to provide us with clean drinking water, which will become very important in the following days. We have had HUGE amounts of rain and massively high winds. We are lucky here, however. Much of the country, especially the mountains above us, (our home in Kenscoff) and in the provinces, especially to our west, has taken a much worse hit. Rivers are overflowing, homes are falling and people are essentially stuck where they are because of flooding. The tent cities are saturated, as you might imagine. I try to see myself riding out this storm in a home made of trash bags with a dirt floor, and I cannot fathom it.

I was able to speak with my nurses from the clinic at FWAL, and they are well so far. The floods uphill and in neighboring towns have kept one of them from being able to travel to work. Numerous adjunct employees of NPH have not come to work these last two days. The hospitals are anticipating a rise in the number of cholera patients, as cholera is carried in the water. School has been closed since yesterday, on order of the President. We are hoping that each blast of rain will be the last - please keep the prayers and good thoughts coming our way as we dry out, survey the damage and provide assistance where we can. Fr. Rick and his team were already out in the tent cities yesterday, providing supplies to those in most desperate need.

More updates to come as I have them.

Hands

I was thinking the other day that I miss being able to give good massages. As part of my curriculum back in the days of my first college major, Athletic Training, we were trained in massage. I absolutely loved being able to use my hands to alleviate pain and provide tangible therapy to the athletes under my care. But even more, I think now and realize, I treasured being able to touch them and offer that as a service as well. As I work here, and as I have thought before, there is a poverty of love in our world, and one of the ways we suffer is by lack of loving physical touch. A few friends of mine definitely possess the gift of touch. When I am touched by them, I can sense their love. But I also notice that because I am not in a place to receive regular physical affection from my friends, I may jump or startle when first touched. The kids I am with on a daily basis thrive on the warmth of physical touch. Their hands and arms and legs are intertwined with mine before I can react, and their hugs are given with all their strength. Just this morning I got to sit with one of my favorite little girls at mass, and she ran her fingers across my skirt, studying my arms and hands and then burying her face against me as we stood. It is only natural to hold her close, my hand on her back as she giggled against my waist. I finally had some baby time with our little Francheese, who is usually being passed from teen girl to teen girl. She clapped her hands against mine then cried to be turned and tuck her head into my shoulder as she then stroked my arm with her tiny fingers. 

Wasson, our new little baby boy! (We had no little boy baby clothes yet).

The time since my return to Haiti has been a constant sea of change, with volunteers leaving, a new schedule to keep, a return to hospital nursing, a crash course in pediatric oncology, a different culture of nursing to learn, new nurses to befriend, and most recently, a move into new volunteer housing. Our new places are very cozy, but a tad warmer than our previous ones – the challenges of being spoiled by air-conditioning, then having to leave it! My face is beginning to resemble that of my adolescent self; therefore the photos including me will be kept to a minimum for a bit! By no means are we suffering – just adjusting. And we are appreciating cold water, ice and cold drinks at an entirely new level. (Yet one more thing that we do not think twice about in the US, but that billions of people live without, so much that my nurses were taught that if medications are taken with cold water they will not work - it is such a rare luxury here).  I am now only a few minutes’ walk from FWAL, but a longer commute from the hospital. But I do enjoy making a house a home, and have enjoyed a bit of housekeeping. The walls are a nice warm yellow, which my friends will know I appreciate. The staff is working tirelessly to accommodate the nearly constant demands which we ex-pats are so good at making, and I now have a fabulous front and back porch to enjoy! 

The new digs, Villa Francesca

My new front porch!

I am now spending half my time familiarizing myself with the Oncology ward at St. Damien. This is the only pediatric oncology program in the entire country. Two passionate and assertive doctors run the program, assisted by a dynamic and straightforward nurse supervisor.  My mornings are spent rounding on each of the patients, reading up on their histories and working through their care plans, meeting with parents of new patients and observing the nurses as they work. I am learning massive amounts each day about the culture of nursing here, the demands placed on families, the sheer challenge and obstacles of a fatal disease in the developing world, the acceptance, submission and the simplicity of faith which are extraordinary.  Numerous cancers are treated here, including leukemias, lymphomas, retinoblastomas, (cancer of the eye), Wilm’s Tumors, neuroblastomas, and osteosarcomas (cancer of the bone). Sadly, however, many children are not brought to the St. Damien program until their cancer is in a very advanced stage, after parents search country-wide for answers to the mysterious symptoms present in their child. Therefore, I was asked to join the staff and help to form a Palliative Care program, so that the children who are determined to be in a terminal state can be treated and supported well.

Palliative care is essentially the support of the whole person and the numerous aspects of a patient and family’s life in the presence of chronic or acute illness. In the States, many resources are available and there is often a multi-disciplinary team consulted to begin planning and implementation of Palliative Care. The patient does not need to be in an advanced state of illness to benefit from Palliative Care – ideally, it will begin at the time of diagnosis, in order to provide for and accommodate the many issues which develop with the onset of illness. These include spiritual care, pain and symptom control, physical and occupational therapy, emotional support, continued schooling, art therapy, decision-making and social support, and the continuous process of educating the family.

There is, of course, a large disparity of resources and care available to the children and families here. But the directors of the Oncology program feel very strongly that this does not mean that the children entering the final stages of life, and even at the start of their treatment, should be forgotten or abandoned in such a state of weakness and pain. I am honored to be able to work with them and to begin training the nurses in this approach to care. This is a slow process, because before anything else, the development of a relationship must take place. I am getting to know the nurses, learning how they operate, observing the relationship between the nurses and doctors, asking oodles of questions as I learn an entirely new area of medicine, and my ultimate favorite thing, sitting with the kids. They are among the strongest, bravest people I have ever met, smiling and nervously approaching the pale-skinned lady as they laugh. They proudly show me their “picky” scars and are glad to oblige when I tell them to slap my hand and give me a picky too. 

Susanna, one of my newest friends

My buddy Christo

The hospitalized child is often very fearful, and carefully watches any approaching person wearing scrub pants or a lab coat. But there is gentleness and power in an outstretched hand. Too often we forget in the rush of tasks to pause for this, and we quickly begin examining a patient instead of approaching them gently. All of my relationships here in Mango, as the Oncology ward is labeled, (each room is labeled with an item, due to the very low rate of literacy, as to accommodate the large number of citizens here who can recognize a picture but not a number or letter), have begun with the simple gesture of that hand outstretched. The kids tentatively and slowly bring their hands to mine, explore my fingers, find my rings, smile and glance back for the security of mom’s presence, and then slowly start talking. The absolute highlight of my week was the sight of a new little friend, Christo, as he recognized me at the top of the stairs, and despite the huge tumor in his abdomen, leapt up the remaining steps to wrap his arms around my neck and hug me with all his might! We exchanged squeezes as we traveled down the hall toward the room where he knew he would have to receive chemotherapy and blood draws, but his smile and instant demand for candy, as he saw it last week in my bag, made me laugh. When we first met, he was terribly scared, but we played through the rungs of his crib and I offered him stickers, which he promptly placed all over his t-shirt. He then showed me his juice and his food. He screamed as he was examined, and then when his blood transfusion was started, and he reached for my hand to hold. What a thrill to gain his trust and then converse with him for the rest of the morning through the door of the office which adjoined his room – that was just the beginning! Now he comes to find me as soon as he arrives, demanding that I feed him his morning spaghetti and sit with him while he watches TV. We snuggle together as he sits on my lap while I work. I was able to sit with his mom and assess how much she understands about his disease, which helps me to understand what the parents’ impressions are of what they are told by the doctors, what they hear and what they interpret from the big words and scary prognosis. This is nursing – what is done in the minutes and hours between doses of medication and vital signs, the constant assessment of the patient and family, the sitting and talking and ministering to them, validating their experience and fears, meeting them just as they are, and providing the answers which we do have in our possession.  It is comforting and encouraging when the easy answers are not there, sharing from our experience, giving insight and counsel while respecting the uniqueness of their situation and remembering that we can never understand exactly how they feel.

I was always a little bit proud of my hands – I thought they were attractive and strong, and my nails have always grown nicely. Then when I entered the hospital setting in the US, nail polish was strongly discouraged and I had to give it up.  On a stupid impulse one afternoon, I grabbed a razor in our inventory room, and as I was opening it, it sliced my finger just so perfectly that a ridiculous series of events ensued. For two hours, a blood pressure cuff was fully inflated and cut off the circulation to my lower arm while attempts were made to stop the bleeding and my blood vessels were cauterized.  A nerve block was given, and the wound was then wrapped too tightly for the next 24 hours. This produced a massive wound resembling a burn injury, put me within days of receiving a skin graft, and deemed me unfit to work for an additional six weeks.  I was terrified that I would not regain sense or motor ability in that finger and that my hands would be forever stained by my incompetence to handle a tiny sharp object. More than that, though, I feared that I would not be able to use my hands to support patients through the most basic tasks, holding them, assisting them in movement, offering massage to friends, even typing on a computer keyboard or carrying equipment. Again, we do not think twice about using our non-dominant index finger, but it is a pretty necessary component of daily life! But now, two years later, I offer it easily to the tiny hands that timidly grasp it. It is held for security during a scary procedure.  I hold the bottle to feed our babies, I balance the numerous supplies and carry them from storage to the clinic, and my little Erline leaps into my arms. I hold Valson and he steadies himself before jetting away, I caress little faces and am led to a seat in the large waiting area and handed a spoon to feed Christo, and I adjust my camera to take photos of the endless poses the children eagerly enter.

Rosenie (r) with Stephanie, one of our newest little ones

Baby Francheese with Sonya, employee of NPH Germany

Some days I sit just craving a hug from a friend or the strength of their hand as it lovingly squeezes my arm and rests on my back. The volunteers hold hands at mass on Sunday evenings, reciting the Lord’s Prayer over the bodies of our recently deceased brothers and sisters. Any of 200 residents of the FWAL program will grasp my fingers as soon as they encounter me. Little Antoine tells me he has a “malade” (problem) with his finger, which is easily remedied with a kiss and a little bit of water. Fabienne and Mama lovingly make me bracelets. The cancer patients give me “five” as hard as they possibly can. I deal out the cards in our game of Uno. I examine the knee of a visitor who has fallen. I wash and dress the newly-burned chest of a school student. I cherish the delicious Haitian 7Up as I drink it.  We cannot possibly count the number of times we use our hands throughout the day, but perhaps we can be a bit more conscious of how we use them and to whom we offer them, outstretched in friendship or offered in prayer, holding pen to paper in the quickly disappearing act of a handwritten letter, dignifying others through acts that confirm the genuineness of our words.