OSHP UPDATE

 Several days ago, I received an email from Lesley Pierce at OSHP her with answers to some of the questions I had posed before I left regarding some specific numbers and situations of children typically on the waiting list for residential care. There are currently:

• 44 pediatric resident spaces (42 filled as of 4/28/11)

Of the current children,

• 7 are legally abandoned wards of court
• 4 are not recognized by their families (informally abandoned)
• 31 have families with varying levels of involvement (from bare minimum to frequent contact)

Regarding the waiting list,

• there are generally 10 children on the waiting list per bed in the hospital  (per Lesley, this is drawn from her translation of official hospital documents and not reliable first-hand knowledge)
• Pneumonia is the largest culprit in the death of children with cerebral palsy on the waiting list- both bronchopneumonia (related to an 'illness') AND aspiration pneumonia (common in children who have difficulty swallowing properly, the risk of which can be GREATLY REDUCED using safe, simple, proper feeding practices).

This information pertaining to the waiting list certainly supports the work we'll be doing with the families of children involved at OSHP. If there are in fact 400+ families waiting to bring their children to OSHP, that means there are 400+ children living in the same conditions that warranted their referral to OSHP in the first place. While some of those families may have no interest in receiving any support or education, some families are trying as best they can to care for their child and wishing there was some some sort of help available.

The email I received from Lesley at 7:50pm yesterday is another, sadder testament to the importance of this project.

"Just an update.  Today I learned that one of my at risk patients died at home over the holidays, which further proves to me the need for what you are planning on doing here."

 

It's hard to imagine a place where children languish and pass away in their own homes with their own parents by their sides; where doctors may not visit if other family members have outstanding bills; where a call to 911 is impossible and can not save a child in severe medical distress... 

Guatemala is just one of them.

Alison, Live and in Color!

This video was taken last week (during Jay's visit to Casa Jackson) in the middle of an activity we've been doing for weeks now. Every time I go to Casa Jackson, I prop a handful of the kids up on the mattress in the playroom, read them the Sesame Street board book, "Bubbles, Bubbles!", and then blow bubbles for them and catch bubbles for each child to "Pop!" in turn.

As I mentioned here, Alison has recently begun trying to communicate and interact more. When she arrived at Casa Jackson several weeks ago, she was silent, pensive, and appeared unsettlingly apathetic. Alison is about two years old and weighed just over ten pounds at arrival (in early March). She's (very) slowly but surely gaining weight, and the concerning tremors that accompanied all of her movement before have been fading fast.

There is something "off" about Alison; Sarah, the pediatric PT volunteering at Casa Jackson, and I both agreed on that. Unfortunately, neither of us are doctors, and specialist appointments are hard to come by. Until she has fully recovered from her malnutrition, it is incredibly difficult to tease out what weakness and abnormal movement is related to the malnutrition and what may have pre-dated it. She's incredibly hesitant to reach out and touch anything, despite being very interested and now having the strength and motor ability to do so. She's a "funky" little girl (funky developmentally, that is.

Over the past week and a half, a new Alison has begun to emerge. She is trying so hard to communicate with the few sounds she has; such a welcome change from the complete silence she offered before! In addition to the very soft "puh" sound you see her making in the video (which she began doing as soon as she saw the bubbles!), she now occasionally offers up a little vowel-sound vocalization. Typical of what you may hear from a six or seven month old playing with their voice, but with more intention. She is still hesitant to touch toys, but with some coaxing and hand-over-hand, she can now get past that enough to PLAY for a few minutes at a time, without any help.

Alison is also more engaging with volunteers. Instead of laying in her crib silently and placidly, she now reaches her arms up and does a little wiggle when I approach her crib and speak to her. She display more emotion and frustration when left alone for longer periods of time, and instead of simply sitting back and watching other children play and ignoring the toys put on her lap, she will topple over forwards trying hard to reach someone else's toys that she's got her eye on.

Her motor skills and strength are improving at the same slow pace as her weight. I was able to keep her on her tummy for about five minutes yesterday while (you guessed it!) blowing bubbles. This was by far the longest she's tolerated it, and though it was a real struggle for her to hold herself up with those tiny little arms and weak shoulders, she persisted! She still topples to the front and sides frequently when propped to sit up, but she is now able to lean on one or both arms to hold herself up for a longer period of time before toppling. 

Alison is still incredibly far behind "schedule" in all areas of development. She is two years old, but her communication skills are at about a 3-month level; her gross motor, cognitive, and socio-emotional skills are hovering around the 6-month level; and is somewhere between the 3-6 month level for fine/visual-motor development.

Something as simple and small as a smile, or the slightest effort to put her lips together and make a "puh" sound may seem minute in comparison to the things Alison is "supposed" to do at her age. Her ability to lean on her arms and hold herself up for 15 seconds before toppling over as opposed to 5 seconds may seem negligible in the "grand scheme" of things. But, as I have said a million times and deeply believe, every tiny victory, every scant bit of progress that is fought and won with hard work and persistence by a child who has the deck stacked so high against them, is worth joyously celebrating. 

Today, I celebrate Alison. 

:)

Finally, a Foot in The Door... of Hundreds of Kids With Special Needs' Homes!

Earlier this morning, I dropped in unannounced to Obras Sociales Hermano San Pedro (OSHP) to say hello to the kids and to ask Lesley a few questions. There were a number of other volunteers and staff people around, but no Lesley. I asked a friendly-looking older woman if Lesley was available. Lesley was not, but Pat introduced herself and asked me what I needed.

I'm unsure why I gave as much detail as I did in my answer, but I explained that I had met Lesley two weeks ago and was in the process of developing some community/family-based support for the kids and wanted to speak with Lesley a bit further.

Pat informed me that she works closely with Dick (who I have heard of numerous times). Dick is probably the largest provider of wheelchairs in Guatemala. Every person I've spoken with who works with disability issues down here mentions Dick at some point. Pat is a special educator (who actually contracted in Early Intervention back at home in Nebraska) and is currently focusing on developing and teaching children how to communicate using very basic picture systems. She works with the children at OSHP, both on the ward and in their small malnutrition unit, and also does a significant amount of work in a village about 20 minutes outside of Antigua where a small school for children with disabilities is located.

I gave Pat the breakdown of my background, my experience, and the goals I have for my return to Guatemala. We discussed the need for better family education and support, especially in the rural areas, and how good, consistent help is lacking down here. Pat shared that in her experience, most of these families absolutely adore their children; the attitudes she encountered years ago when beginning her own work have been gradually changing. These families love their children and are doing the best they can with the scant, if any, support they receive in learning how to care for them.

To meet another person so devoted and committed to advocating and serving children with special needs was, as always, a great comfort and thrill to me. To meet another person who has years of experience doing it in Guatemala and has, figuratively AND literally, a foot in the door of so many homes of children with special needs living in them, was one of the most exciting things to happen over the past month.

Pat and Dick know hundreds of children with special needs in rural communities all over Guatemala. They know what the children's strengths and needs are; they know their families; they know the unique challenges to working with each family. On top of that, they are already going to these homes. Not only will we benefit from their existing knowledge of children and families all over the community who need support, but we also benefit from having potential partners to travel to these communities with.

It's incredible to me how wonderfully this is all coming together, even at this early stage. The individuals I've met who are working so hard to serve these children are gracious and open to working with any other individuals who can help them serve the children better. I'm honored that all of these "seasoned veterans" are welcoming my efforts so openly; that they're so willing to share the networks and systems they use to identify and serve these children, and include me in them so readily.

As this trip winds down, I can't help but be amazed at the incredible opportunities that have presented themselves. When I returned to Antigua in March, my intention was to research and understand all of the ways that I could work with Casa Jackson and Nuestros Ahijados to improve care for children with special needs that were somehow involved in their programs. I intended to find the kids and figure out a way to reach them. It was to be a partnership, but would essentially involve starting a program for children with special needs from the ground-up, around the existing services offered by CJ/ANA.

The work I will be doing when I return in July is shaping up to be very different from what I envisioned only a month ago. The volunteer and staff education I will be providing at Casa Jackson is valuable and I'm excited to do it. The family/community support and education I'll have the opportunity to coordinate and provide is, without a doubt, the epitome of what I hoped to someday be able to do here. I imagined it would take me much longer to establish contacts; to reach out to the local communities and find the kids and families desiring help; to determine the logistics of actually making contact with and visiting specific children and families.

Instead of spending my first several months here just laying that foundation, I am now able to return to these fledgling partnerships, nurture and grow them, and help children and their families sooner and more effectively. I have let go of my obsessive need to hammer out ALL of the details before I leave. The nature of this effort is such that the needs are going to change frequently, and so are the best solutions to meet those needs. The most productive use of my time right now is to get the organization officially established; complete the proposals, projected budget, and information needed to start soliciting funds; and to prepare myself as a clinician for the wonderful, incredible, unique challenges that are going to await me when I return in July.


After having my head immersed in this for several months, I often need to pause for a moment and put it in the most basic terms so that I can appreciate it. Sort of "see the forest through the trees." Yes, we have a number of specific components to the project that will do A, B, and C. We have a mission statement and objectives and a plan.

But do you know what we're doing?

In a country where NO system exists to provide medical care or education to any child, let alone one with special needs; in a country where, if parents want "the best" for their disabled child, they must send him or her away; in a culture which places such value on family ties but offers NO support to parents trying to maintain those despite their child's needs-

we get to help.

We get to visit mothers, fathers, and their children at home. To see the way most children with special needs are living. To have a chance to understand the different challenges faced by each child and family and help them overcome them. To give these parents a voice and the knowledge that they may not be educated, they may not be rich- but they are still that child's parents. If a mother's heart breaks at the thought of being apart from her child; if she wants to care for her special child that she loves so much, she deserves to be supported in that decision.

We get to help parents and caregivers understand simple ways to minimize the amount of physical pain a child may experience due to a physical disability; to help children and their parents communicate and thus connect, regardless of whether or not a child can speak; to help parents understand how to involve the child in his or her own life in more meaningful ways.

To be able to do this at all is a privilege and an honor.

To be able to do this so early in my life, alongside other individuals who have also made this mission the focus of their lives, is a dream.

The Magic of Everyday Moments (And Gazillion Bubbles)

Alison, Sandra, and Esvin sat propped up on blankets in the playroom. As I read the book to them, the words surely becoming familiar by now (“Bubbles, bubbles, on my NOSE. Bubbles, bubbles, on my TOES. Bubbles, bubbles, in my HAIR, bubbles, bubbles, EVERYWHERE...”), Jay blew streams of bubbles over them. Sandra smiled and opened her mouth wide, letting out an “Aoohh,” or “buh” from time to time. Esvin giggled. 

Alison, for the first time since I arrived at Casa Jackson on March 22nd, showed clear excitement, began to squirm around and reach forward, and put her lips together and said softly, “puh- puh- pppuhhh!” Alison was anticipating what came next- the “Pop, pop, pop” of the bubbles. Every time we read this book, I blow a stream of bubbles and, one-by-one, catch a bubble and hold the wand to each of them and help them reach out to pop it

This little girl, twenty-four-months old, FINALLY made a sound. She made a real effort to communicate, a real functional attempt at interacting and requesting and being a part of playtime rather than a spectator. Twenty minutes later, during music play, she began to smile slightly as I helped her tap the jingly bells. 

It was a wonderful day.

With any “helping profession,” there are inevitably times where you feel that what you are doing does not matter; that you are deluding yourself regarding the importance and value of your own mission.

In a country/community so awash with non-profits, NGOs, cultural exchanges, Spanish schools, and the gringos that follow, it’s hard to fight your own prejudices and cynicism about the well-intentioned, naive, unintentionally self-serving efforts of some gringo non-profits. Some are started and run by young adults (check), many by young adult Americans (check and check). All are started and run with the best, most earnest intentions (check, check, AND check).

There are hundreds of programs providing education to youth; providing healthcare to expectant mothers and reproductive care to all women; building homes for impoverished families; feeding the hungry. There are programs housing the disabled and destitute; there are homeless shelters; there are programs providing pumps for clean water and solar panels for electricity.

Why Guatemala? One has to wonder what about this country is so compelling that it serves as such fertile breeding ground for these young projects and their young “visionaries.” Guatemala is not the most impoverished country in the Western hemisphere. It is one of the most violent, with murder and violent crime rates higher throughout the height of the most recent Iraq war than in Iraq itself; Malnutrition is rampant due to a combination of poverty and lack of education, but again- it is nots “the worst.” 

I can only extrapolate my own theories from my own experiences, which are small and slowly building. There is something about Guatemala for sure; an unseen, unnameable magnetism that draws visitors in. Every foreigner in Guatemala is someone or knows someone who intended only to visit for a few days, and years later, has yet to pull themselves away. In many of these places, the weather is dream-like (save for the rainy season), the people can be lovely, the pace is pleasantly slower, and the food is delicious and inexpensive. 

Without delving too far into my own cynicism, which has grown exponentially over the years despite a continued commitment to do exactly that which I view skeptically when other gringos do it, I will say this: it is an easy country to love. Save for the areas where there are semi-bustling tourist hotspots and the pushy touts and sneaky children that come with such settings, and save for the “chh-chh-chh” sound that men use to call dogs AND women, much of the country is filled with smiling, friendly women wearing their colorful skirts, shirts, and sashes, children with deep brown eyes and chubby cheeks, and scores of enthusiastic, chatty teenagers and young adults. 

It is also an easy country to start “helping” in. The market may be saturated with organizations, church groups, and backpackers trying to save the world, but rather than make this more difficult, it almost seems to make it easier. Networking in Antigua occurs at the same consistent pace as in Los Angeles, but rather than exchanging cards and information about bands, photographers, promoters, and artists, in Antigua, there is a constant exchange of information regarding various education, healthcare, and humanitarian projects operating in the city. 

And somehow, despite the inundation, there are still people that aren’t reached by the many hands outstretched to them. There are still families that are hungry, still families living in dirt shacks, still children picking through garbage at the dump, and countless other families eking out countless difficult existences. 

In the midst of this dichotomy that sometimes exists, this Gringo Heaven/Guatemalan Hell, I have come to make my home. To put my heart and soul into something the way so many others have, or have tried to. And I do still struggle with my own concerns about whether all of these gringos are helping or hurting, somehow, in some small way.

I don’t have a background in business or finance. I have a surprising amount of business and financial common sense (surprising because I lack “common sense” in some other fundamental ways), and have spent enough time traveling, researching, and hungrily devouring all of the information I could find about international humanitarian aid and efforts to know more than the average bear about the challenges and pitfalls of direct community aid. 

In any business venture, for-profit or not, it helps to have a “niche.” A specialty or focus that is slightly different than all of the others. Special S.T.A.R.s has children with special needs, and a focus on working IN the community, WITH the children’s families.

There are organizations serving children with special needs, but most provide residental care for children rather than working to support the exceptional parents who want to care for their own children. It seems that they sometimes focus on bringing children the BEST possible therapeutic care, rather than the best possible life. By bringing the support to the families that want it, and telling them, “YOU are capable of giving your child a happy, safe, comfortable life. YOU are worthy of loving and caring for your child in your own home. YOU, not the foreigners, not the wealthy philanthropist and his staff, deserve the right to keep your child in your home, if that is what you want. YOU ARE GOOD ENOUGH.”

While the direct therapy and support isn’t exactly my mission; while I feel the community-oriented support is more important and a more worthwhile investment of time, days like yesterday serve to remind me that every single moment truly does matter. Every minute spent loving and stimulating and encouraging a child, every morning that you sit children up and sing to them and play with them in view of their nurses and parents, every small effort that doesn’t measure up to the grand ideas you had for what you COULD do, it all counts.

Since returning to Casa Jackson, and with the passing of the past few weeks, I have seen fewer and fewer children laying on their backs in their cribs all day. I have sat alongside mothers holding their children, watching me sing and play to another child, and had the quiet delight of hearing them begin to sing the same song and repeat the same words in the same tone to their own child, after seeing the smiles and laughter of the child I’m playing with. I have seen a little girl smile for the first time in weeks.

Maybe we are just a bunch of naive kids trying to make our mark; to do the impossible; to fight our own fears and feelings of helplessness in a world that is so far beyond saving. 

But maybe, just maybe, it does matter. 

And you know what? I’ll take the small changes, and the big possibilities. 

“Maybe” is enough for me. 

No, But Really... What IS The Plan?

I know I've been sharing a ton of excitement lately about all of the new possibilities coming my way, but few details regarding the actual "plan." Part of this is due to the many transformations that are taking place at this early stage. Every day, a new idea or opportunity presents itself, and I'm doing my best to maintain a tight focus (for now), identifying the ideas that seem most pertinent, most pressing, and the most viable. Setting up and running an organization is going to be an incredibly rich learning experience, and I feel very strongly that in order to ensure the success of the effort, I need to focus on one possibility at a time, gaining experience, insight, and skills, before attempting to implement another grand idea.


It's just that there are SO many grand ideas to be had, here! The networking I've been fortunate enough to do has been invaluable. I am learning more and more about the different organizations here that serve or interact with the special needs population, the way their services are delivered, and common complaints and criticisms about each. I'm learning about the different needs that exist in various parts of the country, and the names of the people trying to meet those needs in specific ways (residential care, provision of wheelchairs, medication assistance, etc).


Additionally, I have met two people who are passionate and committed to improving quality of life for children with special needs. Lesley, from OSHP, and Selena, the yoga teacher and long-term volunteer at Nuestros Ahijados who referred me to Lesley. Corinne and Charlie had several long-term volunteers at the house last night for a rooftop barbecue, and Selena and I had more of a chance to discuss her experiences at various organizations in Guatemala, the needs she saw, the barriers she confronted, and ways in which she desperately wants to personally support these kids but has not had the time or ability to yet coordinate those supports. 


I appreciate everyones' patience with the vague assurances of "great ideas" and opportunities to come. Although new ideas and possibilities tempt me every day, and the project will continue morphing and developing for a long time to come, a handful of the plans entertained are edging closer and closer to being "definite."Now that things are solodifying, it is becoming much easier to complete the website. In the meantime, I wanted to share with you some of the material drafted for it that describes what is currently happening in the organizations we will be working with, what the needs are, and how we intend to meet those needs. 


This is a project description I'm drafting and working up for use on the facebook page and website. It may give many of you a clearer idea of what plans are actually being laid down here, beyond snuggling babies and "helping kids with special needs." 


Enjoy!



"The support offered by Special S.T.A.R.s varies based on the strengths and needs of the communities and programs we serve. Currently based in Antigua, Guatemala, we are forming partnerships with two local organizations serving Antigua and surrounding areas.


CASA JACKSON- VOLUNTEER/STAFF EDUCATION:

Casa Jackson, located just outside of Antigua, in San Felipe, offers in-house acute care to severely malnourished infants and children. Founded and supported by Asociasion Nuestros Ahijados, Casa Jackson is visited by almost a thousand volunteers each year. All volunteers are give basic training regarding safety, hygiene, and proper care of infants and toddlers. 

Children with special needs are at increased risk for malnutrition, and a number of the children admitted to Casa Jackson each year are affected by a variety of medical and developmental issues. While skilled volunteers do visit periodically and teach staff and volunteers about how to support all babies' health and development, there are currently no formal, ongoing training opportunities or educational materials available to interested volunteers, staff, and families trying to better support the children with special needs.

Special S.T.A.R.S. is working with Casa Jackson/ANA staff to film an instructional video demonstrating some basic techniques and simple changes that can be easily integrated into children's daily routines. These techniques and changes include "tummy-time" and developmentally stimulating activities for typical infants; use of different positions to provide strengthening, stimulation, and interaction for all children; why, when, and how to safely stretch the muscles of children with physical disabilities; and how to safely feed children with cerebral palsy and similar disabilities.

In addition, we are developing a series of brief, hands-on training seminars for interested volunteers and staff; another series designed to help parents and caregivers of children admitted to Casa Jackson understand their child's unique needs and how to support them; a visual "care guide" to provide to parents of children with special needs prior to discharge (illiteracy is common); and reference and resource materials to assist local staff in selecting developmentally appropriate positions and activities for the children admitted.


OBRAS SOCIALES HERMANO SAN PEDRO/FAMILY OUTREACH & EDUCATION:

Obras Sociales Hermano San Pedro is a large private hospital located in downtown Antigua. OSHP serves a variety of medical and social needs within the community, and is home to one of Guatemala's largest residential programs for children and adults with developmental disabilities. 

Children admitted to OSHP stay receive loving, compassionate care in the facility for all but eleven weeks per year. Those who can be safely returned home for their summer and winter visits stay with their families, who are given food, medication, and medication dosages and instructions. Families do not receive any information, education, or support in caring for their children, who are generally very significantly disabled. 

While some parents simply are not responsible or dedicated enough to properly care for their children, other parents long for the chance to provide a better life and better care for the child they love so dearly. These parents may struggle with poverty, lack of education, and abuse or abandonment by their spouses. They often feel that they have only one chance or choice to ensure that their child is cared for safely and skillfully, and with heavy, broken hearts send their children to live at OSHP.

For the parents who make the difficult choice to send their child to live at OSHP, help may be a long time coming. There are a limited number of beds in the pediatric ward; only when a child moves up to the adult ward or passes away does a spot become available. A number of children pass away each year while waiting for their chance to join the OSHP family.

Surprisingly, there is no support offered to families between referral and admission to the OSHP waiting list, and the point at which a child is actually admitted. While these families wait, the children suffer under the same conditions that warranted the referral for out-of-home residential care in the first place. No system exists to monitor these children and ensure that they are safe from maltreatment or neglect, let alone to support parents in improving their ability to safely care for their child until a bed becomes available at OSHP.

We are in the early stages of collaborating with Lesley Pierce, a doctor and long-time volunteer who directs the Early Stimulation Programme on the pediatric residential ward, to develop and implement a system to monitor and support children on the OSHP waiting list; provide support and education to help families improve their understanding of and ability to meet their child's unique needs when home on holiday; and to identify and deliver the material resources needed to enable the most dedicated and caring parents to provide safe and competent care for their children at home."

Getting Philosophical Over Another Afternoon Crepe...

At some point after returning to Antigua, I realized that by the time I leave Guatemala in April, I will have spent nearly half the year thus far here. Of the 16 weeks that will have transpired, I will have spent a little over 7 in Guatemala.

I'm okay with that.

Although I've bounced around a bit recently in terms of where I've been staying, it is beginning to feel remarkably like "home." Not necessarily the home I've known forever, but a "home" for me no less. As I've become more comfortable and relaxed here, I find my mind wandering more and more as I walk through the streets. I find that where I once marveled at the cobblestones, warmed my eyes on the glowing peach walls of la Merced, and jumped at every firecracker explosion in the distance (and nearby), I now walk around wrapped up in my thoughts, ending up across town with little recollection of how I got there. It's all become so comfortably familiar.

It's a strange sense to have, that your life is so whole in two very different places. Back where I came from, there is family. There are friends. My boyfriend; my nieces; many places that I love and miss. The town I grew up in; the city I chose to make my new home. Everything familiar and well-worn exists there, a testament to the insidiousness with which attachments are made in spite of all of my efforts to the contrary. I have grown up there. I have a lot of complaints, but it has always been HOME.

Returning to Antigua was delightfully unsettling, because for once, upon returning to a foreign place, I was greeted with the same relief that I feel when stepping off a plane in Boston or Providence. I may not have a specific place here to call home, but still- Antigua is "home" in it's own way.

That played out adage is true: "home is where the heart is." In Providence, in Lakeville, and my childhood stomping grounds, my heart rests with the people I know and love; with memories of fun and happy times. My heart is written on the well-worn pages of the life I've always known and the places in which I've known it.

But now, a large part of my heart is here, whether my body is or not. When I return home, I think so often of the little faces I leave behind here; those that I know and love already, and those that I know I will meet in the future. The sum of my years of determined optimism have alighted in this quaint old city, the intermediate point between a world in which I can live, sleep, and socialize (somewhat) safely, and the more destitute places around it where there is such a need for compassionate commitment. Places where I can finally make myself useful in the only ways I know how.

As someone who never moved far from home, never went away to college, and always took family commitments seriously, it's a strange new feeling to see this separation take place. It's exhilarating, but unreal in some ways. This world, these little kids, are so real to me. They are flesh and blood and life and smiles and tears and hearts. But to everyone at home, the place from which I came, they are nothing but a story. A compelling story, a story that is deeply cared about and watched closely, but a story no less. I am the only one who knows how Sandra feels in my arms; what her laugh sounds like, how she uses her face and body to communicate.

I am the conduit between these very real little people, this very real place, and the people who constitute my other reality. I dance between these two realities, trying to reconcile them; to bring one to the other; to merge them and create a world, a life, that is real to everyone, and not just myself.

It's hard to think of leaving "home" for a long time. Though I've always tried so hard to resist it, I am attached, settled, and fond of the only place I've ever called home. The thought of leaving the people I love is frightening. To go so far away, despite the ease of communication in the digital age, feels like a subtle death. To make the conscious choice to go so far, where I cannot touch or hold so many people in my life, and remain there, is a scary one. When I leave, life will go on. I will be missed, but life will be exactly the same. Novel people and experiences will creep onto the periphery of my loved ones' lives and quietly take my place. For a child who grew up terrified about being pushed aside and forgotten, this is disconcerting.

But to think of what I gain in return... The opportunity to live the only real dream I've had. The privilege of handing my heart and life over to these children, instead of just one person. Does it strike everyone else as deeply futile as it strikes me to give your heart and your life to a single human being? To say, "above all else, I put you first. I trust you with my heart, with my soul, and I will allow you some say in determining the course of my life, because it is so intertwined with yours."

Many people do it, and are far happier and richer for it. They find contentedness in their love and the life they build. They care so much for the person they've chosen to be with, that they are willing to make adjustments to their plans. They are willing to make that person their top priority.

I can't, because I have seen what I have seen, and that makes me culpable. Just as any halfway decent human being couldn't see a man get hit by a car and drive away without checking first to see if he's okay and offering some assistance if he isn't, I can't see the conditions and problems I've seen without staying and offering whatever assistance I can. I feel like there is sometimes confusion about the exact source of my commitment to this cause; about what exact sentiment has gripped me so that I can't imagine following any other course right now.

I follow this course because several years ago, I went far away from home to a unfamiliar place to see if I could be of any use to the children I love so much, in life and in theory. Whether I knew what I was doing or not, I lost my ignorance when I walked into Inabif orphanage and saw Brayan sitting alone in a poorly-fit wheelchair in the corner of a dusty courtyard, moaning to himself. I lost my ignorance when I saw baby Samantha completely ignored and forgotten, locked in her own world, waiting for someone to pick the padlock and let her out.

To not know them, to not see them, and not help them, that is forgiveable. To see, to hear, to touch, to love them, and then not help them? Unimaginable.

Snapshot: An afternoon at Casa Jackson

It occurred to me today that while Antigua, Casa Jackson, and the work I do there has become incredibly familiar to me, it is still likely a mystery to most of you. I've never really described a "typical afternoon" here in it's entirety, instead describing and updating the issues and progress of specific children. For those interested, here it is: a typical afternoon in Antigua (for me).

Note: I worked a short shift this afternoon as I had to return to Nuestros Ahijados to begin recording voice-overs for the training video with Ray, making it an ideal afternoon to describe for everyone. The shorter the afternoon, the shorter this entry can be for you all (your eyes will thank me)!

After enjoying my lunch crepe (filled with spinach, bacon, cream, cheese, and mushrooms, and an egg), I began walking from Luna de Miel (the creperie) back in the direction of La Merced. La Merced is one of the large, peach colonial churches in Antigua. Set near the edge of town, it makes for a wonderful reference point. I walked up the cobblestone street, passing locals and travelers alike. I was incredibly warm in my loose long-sleeved cotton shirt and shorts, but have tried to cover up a bit more as I've been getting roasted by the sun each day.

I passed La Merced and continued walking up the street towards Carretera San Felipe. I crossed over the busy road that forms the base of the triangular plaza near Corinne and Charlie's neighborhood, and waited on the corner. I waved down a tuk-tuk and hopped in: "Casa Jackson en San Felipe, porfa."

Luckily for my back, we were out of the cobblestones already, and the brief ride up Carretera San Felipe was a smooth one until we hit the dirt road for Casa Jackson. We turned left from the main road and began to bump and jostle down the dusty road, passing open ditches in the middle of the road and the men digging them (roadwork, but please don't ask me what they're actually doing). We pulled up to Casa Jackson. I hopped out and rang the doorbell. The tuk-tuk driver kindly waited until I was retrieved by the director, Silvia, before driving away (the road is not a safe one for lone gringas).

I locked my bag into one of the small lockers downstairs and donned my scrub top and mask. After a vigorous Purelling, I headed up to the second floor to see the babies. It was somewhat quiet, as the babies were still in the midst of waking up from their naps. Andrea had asked me to orient two new volunteers who had just arrived, so after a brief explanation of the schedule and how things are run and the requisite post-nap diaper changes, I got down to business: baby snuggling!

Laura, the incredibly frail little girl nearing three who has been in CJ since November (and will be soon receiving a medical work-up to determine if there is a reason why she gains almost no weight at all) was crying and reaching to get out of her crib when I walked into the room. I said hello to Alberto, Esvin, Sandra, and Javier (her "roommates"), and donned the white scrub jacket designated for picking her up. After a few minutes of cuddling, I put her in a walker in the central playroom and began bringing her "roommates" out for some playtime and fun. 

Sandra had been chattering away since she heard my voice when I entered the room. I walked over to her crib and she erupted into giggles. I took the side of her crib down and leaned down to give her a kiss.  She opened her little mouth wide and turned to kiss me back. 

"Te amo, Sandrita! Duermes bien, chiquita linda? Tienes cosas que tu quieres digame? Hablas, chica, hablame!" (I love you, Sandra! Did you sleep well, pretty girl? Do you have things to tell me? Talk, girl, talk to me!)

Sandra smiled and opened her mouth veerrryyy wide as her arms went stiff and her little legs began to kick (a typical pattern for children with spasticity when excited). After a few seconds, she got it out- "Aaahho! Ahhh... Buh... Oohhh!" (My best guess? "Te AMO!" followed by "burbujas!"... that 'B' sound is coming out a LOT now and only stops when I blow bubbles for her). I tickled her and said, "Te amo tambien, Sandrita! Besos! Vamos, quieres jugar? Quieres burbujas? Siiii, yo se tu quieres!" (I love you too, Sandra! Kisses! Come on, want to play? Do you want bubbles? Yes, I know you do!)

After a few minutes of hug-time, I brought her into the playroom and sat her up on the mat with a lot of blankets rolled around her for support. I went back into the room to bring out Esvin, who for some unknown reason was in hysterics upon waking up from his nap. Happy hysterics. I haven't ever heard him giggle so hard for so long! I propped him up next to Sandra, and put some more cushioning around my little friend Javier, who had been placed next to them by another volunteer. 

With the little ones in front of me and a few children in walkers around me, I grabbed the Sesame Street "Bubbles, Bubbles!" book and began to read it to them. As I read, I encouraged Sandra to lift her head up and look at the pictures. I held the book in front of Esvin and helped him to turn the page. I had Zoila touch each body part named in the book, and I touched the noses, hair, and "piggy-toes" of each child as I repeated the words, "burbujas, burbujas, en mi NARIZ! Burbujas, burbujas, en mi PELO!"

After the book was done, we got to the REALLY fun part- actually BLOWING bubbles! Zoila and her mother (who is there every day and helps to care for the other children as well as Zoila) took turns blowing the bubbles and making sure each child was showered in a veil of bubbles at least once or twice. Esvin, as always, was having the MOST fun with this, and nurses changing diapers in the other rooms could be heard laughing at his non-stop giggle.

As Zoila's mother continued blowing bubbles for the children, I began to change Sandra's position to side-sitting. With some stabilization, she was able to work so hard and not collapse when putting most of her body weight over one arm or the other-a nice surprise considering her right arm is so much weaker than her left! It was incredibly challenging for her, but the bubbles were a great motivator. It was so wonderful to see her succeeding in a new position. I was beside myself with glee when she began to tip to the left side and actually put her arm down and pushed back up slowly until she was almost upright. She did this a number of times over the next ten minutes. Very exciting stuff!

I laid Sandra back upright against the blanket/pillows I had set up and brought Esvin to the edge of the mattress. I stacked several blankets underneath his bottom to lift him so that his knees were bent at about 90 degrees, and played with books and toys with him to work on his postural control and endurance. He was able to stay upright for about three minutes before sinking slowly back to the mattress. He needed a rest- this is a little fellow who VERY rarely is forced to hold himself upright- but I was pleased to see him fighting gravity as much as he did!

I took all the shapes out of the shape-sorter and helped each child take turns to hold a shape and put it into the right space. My goal in this was not necessarily to get children doing it independently, but simply to get them truly engaged in an activity and using their hands for play. There was a lot of hand-over-hand, but a few of the kids were able to push them in once I lined them up. Still great, considering the three and four year olds at CJ aren't able to complete a shape-sorter due to a lack of exposure to those types of educational play activities!

After some more bubble-blowing fun (Zoila kept asking me in her deep little voice and Sandra periodically got out a "buhhh" while staring intently at the bottle sitting next to me), it was time for bottles. I sat on the mattress, my back against the wall, with my knees bent and legs almost upright. I sat Sandra on my stomach facing me, her legs on either side of my torso, her head resting against the front of my knees. I put a folded blanket behind her head to keep her fully upright and prevent her from dropping her head back to swallow, as she's so fond of doing. I waited until she opened her mouth and put the bottle in. We went verrry slowly, waiting for her to finish one gulp before putting the bottle back in to take another.

As I fed her, one of the nurses came over and instructed me to lay her down for feeding. "Ella come mejor. Necesitas hacerlo." (She eats better (that way). You need to do it.) I tried to explain to her that if I laid her back, she wouldn't be able to swallow safely, and the milk would drip into her lungs. I tried to explain to her what I was doing and why, but she shook her head. After another minute of watching me, looking annoyed, she went into a neighboring room. I heard her complain to Juan Pablo (one of the administrators/caregivers who is extremely receptive, interested, and supportive of my efforts with the children with special needs there) that I wasn't listening to her and that Sandra wasn't eating because I was feeding her wrong. Much to my delight, I listened as Juan Pablo explained (much more fluently and naturally than I had) the difficulty Sandra has swallowing, why my technique was safer, and how important it was to use it to prevent Sandra from getting sick. A moment later, the nurse reappeared and smiled apologetically. "Lo siento! Yo entiendo ahora." She told me that Juan Pablo had explained to her what I was doing, and that she understood now. Sandra finished her bottle slowly and safely.

Ray arrived to walk me back to Nuestros Ahijados, and I reluctantly hugged Sandra and returned her to sit on the mat. With an affectionate tousle of each child's hair and an, "Adios, chicos! A mañana!", I was off. We walked back up the dusty dirt road, turned right, and traveled along the busy Carretera San Felipe until we reached the lush, ivy-covered gates of Nuestros Ahijados, where I finished out my afternoon.