Love is Hard

Beto at Casa Jackson, 2012.
Photo ©Joseph Labelle

 In the midst of a busy Tuesday morning at Casa Jackson, the doorbell rings. Half-sitting, half-standing at the computer, I am sifting through a pile of to-do lists, community nutrition education materials, and volunteer applications when I realize that I should probably let whatever parent or visitor has arrived inside.

I walk briskly to the door, opening it with my standard “Yes I am a foreigner, please don’t be frightened, your children are safe here” smile and soft-spoken Hello, welcome, please come in. 

A petite knob-nosed woman, clad in flip-flops and a worn, stained tee-shirt over her patterned skirt steps inside. With civility, warmth, and almost flourish, she introduces herself and her companion. As she speaks, a vague memory of this face resurfaces.

Good morning, I’m the mother of Alberto, and this is his aunt. I am here to visit my son.

So many emotions are rocking me, I don’t even know which to go about hiding first. I take a deep breath, smile a little too widely, and greet her enthusiastically.

How wonderful that you’re here! He’s growing very well... a very smart and beautiful little boy. Please, come in, come in.

As I feel my mouth move around these words, my heart drops to my gut and I feel it pulsing and throbbing there. An inner protest begins to mount, quietly at first, until it crescendos to the pitch, volume, and frequency with which my little Beto, her little Beto, the two-foot-tall miracle at the center of it all, demands my attention whenever I need to speak to a tour group or important guest... no no no no no NO NONONONONONONONO. 

I want to cry. 

******************

In the year that I have been with my little boy, I have only once met this woman. She comes to Antigua weekly for a food distribution, only ten minutes down the road. She does not visit him; she does not call. His father, during Beto’s intake, informed the nurses that ‘If he dies, he dies. We’ve got other ones.’

Beto’s older brother died in Casa Jackson a year before he was admitted, 6 months younger yet weighing still more than Beto did upon on arrival. There are now three children, including Beto, left. I wonder how many he would have to lose before their individual lives begin to hold value.

His parents informed the hospital months ago that they don’t want to take Beto home. ‘You can keep him,’ they say. They do not try to explain or justify their choice. They simply let us know he is ours to care for now.

Two weeks ago, the nurses asked me if I will take Beto in when he leaves the hospital. I am scared; I am overwhelmed. I am unsure if I am ready for such a big step. The association’s lawyer assures me they will help work out the legal issues surrounding him being placed in foster care with me. 

I have said yes. I am scared, but I am happier than I have ever been. It is a new level, a different plane of joy. I am realistic about the sacrifices and challenges ahead. There is nothing I wouldn’t give up to keep this little boy safe, happy, and loved forever. 

Beto and I talk often about the fun we’ll have soon, when he can leave the hospital and come home with me as he begs to do each evening. We make plans together. He asks me if he’ll have to come back to the hospital to sleep. I tell him no. His face lights up and he squeals in delight. He wants Elmo pajamas, and bubbles, and to eat chicken soup with rice for dinner. He has asked for bedtime stories, and crayons, and to ride in a car from time to time. He wants to go to the zoo. 

******************

As his mother and aunt dress themselves in the requisite hospital top and surgical mask, I rapidly ascend the stairs. I find Alberto on the third floor, playing with a new volunteer. He is standing, digging through a toybox, and as he turns, I have the joy of watching his face at the moment he realizes I’ve arrived. He shouts my name and shuffles over to me in his pink pants and tiny Crocs, arms outstretched, giggling.

In one quick motion, I lean down, pick him up, and smother him with hugs and kisses in my arms. 'Good morning, sweetheart! I love you!'

We greet each other as we do each and every day; gleefully and without abandon, relishing those brief moments each day where we belong to each other, and only each other, before babies must be fed or diapers changed, before scheduling or emails or program planning steals me from us.

I kiss his nose and forehead repeatedly as I try desperately to feign happiness and excitement. He hasn’t seen her in so long. Will he remember her? Will he be nervous to go to her? Will he choose her over me?

I grapple with a rising jealousy; a fear that for how inseparable we are, for how he sees me as “his;” for how his sun rises and sets over my shoulder; for all of that, I fear that he will be thrilled to see her. That he will cry when she leaves as hard as he cries when I leave. That when she leaves, he will repeat her name as he does mine: 'Amy Amy Mama Amy Mama Amy...' 

I may be his mama, but I am not and will never be his mother. I cannot fight biology. I love him beyond measure, but it is not my love or my body that brought this shining little light into existence.

How much easier this love is when it’s just the two of us, the other babies, and my humble little staff of nurses and volunteers. It hurts then, but not to this depth. 

It hurts to hear him cry as I sit in my office, knowing that he wants only my arms to comfort him, torn between the ‘greater good‘ of completing whichever priority on the current mountain of tasks must be done for the day and the good that is most crucial to me- that of his comfort. Of his well-being. 

It hurts to leave him behind each day, to eat dinner alone, wishing only that I could make him a grilled cheese cut into hearts for supper before giving him a long bath in which he can splash and play, and then tucking him into bed and reading his favorite books. It all hurts... But this, this is new.

'Beto, your mom is here to see you. How fun! You’re going to play with your mom... You’re going to say ‘hi mama!’ and give her a big hug. Are you excited?'

My heart begins to criss-cross with hairline fractures as I watch my little boy processing this news. He is not happy. He is not sad. He is quiet and somber, and peers quite seriously and intently into my eyes as he slowly nods. I pull him to me again and rest my lips on the top of his head, square in the center of a whorl of soft jet black hair, pressing down the cowlick that persistently pops up after bath-time.

I walk down the stairs with him. As we round the corner of the stairwell, his mother is ascending from the first floor. We come face to face. I smile and give Alberto one final, reassuring squeeze before passing him to her, arms open, awaiting this child that is rightfully hers. Alberto looks quizzically at me as he goes to her, but does not resist, and in that moment I know he remembers.

She holds him at her hip, facing her, and he stares up at her with his Very Serious Face.  He is not speaking. He is not smiling. I feel like I’m gripping a live wire with both hands, tension coursing through my body. I am sick. I need to step away before I give in to the urge to rip him from her arms and sob desperately 'mine mine mine.' 

I go to the laundry room and begin putting away a basket of clothing, taking deep breaths as I fold bibs and onesies and tiny sweaters for premature babies. I feel indescribably guilty. This woman, this poor woman who has faced more hardship in her life than I can ever begin to understand, it is this woman who I want to edge out of her own child’s life- for his safety, to be sure, but still... As a woman, a future mother, a human being, we are too close now. She is not That Woman Who Almost Let Him Die and Has Abandoned Him... no, she is, once again, his mother.

And me, who am I? Who am I to bear this massive responsibility; this right to say which poor, uneducated parents deserve to keep their child and which do not? A young foreigner, not even a parent myself, who tries desperately but will never truly grasp the suffering my patients’ mothers have endured. As I pair tiny socks, I begin to drown in the shame of my own righteousness.

I hear footsteps behind me, and before I see or hear him, I know he is in her arms, looking for me. I turn and see his thin arm outstretched, index finger pointed at me, face growing more desperate. He is seconds away from crying. His mother walks towards me, irritated. I put my hand up to his cheek and he grabs it with both hands, entwining his fingers with mine, and pulls me towards him.

'Beto, it’s time to play with your mother... I’ll be here after, I promise. It’s time to visit with her now. We’ll play together later, sweetheart, later.'

It is not his tears or his cries that ruin me in this moment. It is the way he clings to my hands, clawing at them as I free one finger at a time, only to find another trapped in his tiny hand.

It is the look on his face; this confused, sad, desperate look. It is the pain I see in his eyes, the betrayal he feels right now. I am his security blanket, his comfort... and I am walking away. 

He is staring at me with wild eyes sobbing, arms outstretched, calling to me- ‘mama amy mama amy amy mama.’ 

I smile and apologize to his mother.

I go downstairs, sit in my office and pretend to work. I pull up documents and schedules and to-do lists and I try to make sense of them. I am emotionally dizzy, spinning with this horrible heartache and these empty arms and this sickening guilt and shame and the rising fear that she is here to take him home. 

I am not a ‘believer.’ I find myself praying for the first time in years. Dear God, don’t take this child, don’t let this child die like his brother, don’t take him from me...

An hour after arriving, she leaves. I hear the heavy door click shut behind her and walk up the stairs to find Beto sitting on the mat in front of the nurse's station, a blank stare on his face. He looks at me as I kneel down in front of him.

He crawls onto my lap, wraps his arms around my neck, and sighs one word onto my chest. 

'Mama.'

Beto celebrating his 3rd birthday at Casa Jackson, 15 months after arriving near-death.

November 2nd, 2011

I am sitting on a plastic chair in a small, lemon-yellow room. The sunlight fades outside and slowly, darkness falls like a blanket over me and the baby in my arms.

He lifts his head up momentarily, eyelids heavy from the combined exhaustion of spending a night in the street outside the local fire station, and his constant, anxious crying for “mama.” He creeps a tiny hand underneath the bottom of my mask, settling it underneath my chin, and drops his head back onto my chest. His other arm finds its way around my neck, in my hair, and he rubs it between his little fingers and settles into  my arms.

I rub his head, rub his back, pat his bottom and rock him gently. We sit, quiet, save for his occasional weak moans and choked murmurs of “mama.” I can’t even begin to process what this little baby must be thinking. At a year and a half old, he is old enough to know his mama. Old enough to look for her in every face that enters his room. Old enough to remember her and want her arms around him for comfort, not those of a stranger. Old enough to be scared and confused and traumatized, not just due to the physical experience of being abandoned and the loss of his familiar caregiver, but by his thoughts and confusion surrounding it all.

I put my hand to his cheek, feel its fullness in my palm, and try to imagine what sort of horrible circumstances or tragedy must have led his mother to abandon this beautiful, sweet, perfect, loving eighteen-month-old boy outside of a fire station several hours away. We pass two afternoons like this before he’s comfortable enough to sit within arm’s reach of a volunteer or nurse and play with another child.

How Can I Describe...

What it feels like to be here, doing this; this work that I love, in a place that I love?

I can't. Every day, I gleefully pass through another unexpected moment in which I am struck with the realization that yes, this is real, and yes, this is my life now.

It's the little things. The little things that seem surreal in the most delicious, indulgent way. Listening to a friend's iPod over the speaker system at a popular restaurant so we can hear our favorite songs by one of our favorite bands from back home. Splashing around for hours in a swimming pool in a gorgeous hotel with eight friends-- in the unforgiving rainy-season downpour. Buying tortillas from a stooped-over little woman passing by my doorstep carrying a massive basket on her head. Serving drinks behind a Guatemalan bar, listening to live Guatemalan music, with Guatemalan friends. Telling a joke that garners a genuine laugh-- IN Spanish. Sitting on my roof after a long, crazy night out, staring over the tops of volcanos to the lightning storms flashing in the distance.

I strongly suspect that the magic of the moments aren't entirely attributable to Guatemala's whimsy and charm. For the first time in my life, I truly feel at peace with where I am, what I'm doing, and, for the mot part, who I am. It's amazing the ease with which you can surrender yourself entirely to each moment when you suddenly find yourself inexplicably free from the weight of your own expectations, disappointments, and past failures.

Here, I just am. I am Amy. I am happy.

Not to say that I don't have moments where I'm stressed, frustrated, anxious, down, despondent, disillusioned, or dissatisfied. I've had plenty. I'll have more.

I think I said it best in my journal entry last night:

"There are headaches and frustrations, but...


I'm happy.


It is not a constant state of mind or an emotion. It is this overarching, all-encompassing sense that finally, I am where I belong, doing what I am meant to do."



*******************************************************


My work has been keeping me incredibly busy. There are most definitely not enough hours in the day to accomplish the many things I want to accomplish each day. There are the day-to-day responsibilities of giving tours and orientations to new and prospective volunteers. Supervising and providing feedback to volunteers to ensure the kids are being safely cared for and supported by the many, MANY people we trust to come in any given week and care for them, with what I feel is woefully minimal preparation (not for long!).

There are the administrative tasks to be completed, which involve tracking down information in medical records written in my non-native language, updating several databases and writing bios and providing information about the kids for our various websites, maintaining the schedule (a complex feat in itself at times), and trying to meet the needs and requests of the staff at CJ and ANA (Casa Jackson and Nuestros Ahijados).

There are the therapeutic moments and purely indulgent playtime I try to cram into my day, between communicating the nurses' requests to the volunteers, picking up any slack due to low volunteer count (hello sweeping, mopping, and laundry in between diaper changes and paperwork), etc.

There are the countless hours I've spent so far developing and writing strategic plans for a new volunteer program structure that benefits the children more fully, and uses the volunteers more effectively. There's the plans for in-house and post-discharge therapeutic services that our director wants to provide; the plans for overhauling the 2nd and 3rd floor play spaces to be more stimulating, motivating areas where our patients can safely explore and play.

There's the sponsor-a-crib program that is in development; the plan for improving the system in place to connect patients with additional medical services and procedures they need that needs to be written (by me); the training material to teach longer-term volunteers about early childhood development, developmental stimulation, and therapeutic play. The internship program that I need to develop and have ready by October 1st when my first "official" intern arrives.

There is the added mental challenge of switching between my native language and my non-native language throughout the day; of standing amongst nurses and staff members and trying desperately to follow and understand what the hell is going on. Of trying to express myself clearly and articulately, when I don't possess the words to do so. Of having a volunteer arrive and speak ONLY Spanish, and suddenly find myself having to translate the general orientation and training into Spanish without a dictionary, google translate, or the like.

I am exhausted. I am drained. Sometimes, after particularly hectic days, I find myself forgetting Spanish by 5pm. The easy banter I sustained only hours before suddenly sounds like gibberish to me, and the thought of even listening closely and TRYING to process the words I hear is enough to make me want to run for the hills and hide out until my brain decides to return from its brief vacation.

I've still got a ways to go, for sure, but my Spanish is at least improving. I keep meaning to sign up for lessons. I have a feeling that I'll make quick progress once I do; heck, if I've gotten this far without lessons, how far and fast can I go WITH them?! Soon enough... I think another week or two of focusing on work is the best idea for now.

There's been a spate of crime recently, both violent and non-violent. Lots of rumors about who's responsible and whether or not it'll happen again. Crime, security, and the upcoming elections deserve their own post. It's an incredibly interesting experience, to be here in the lead-up to the elections. I'm learning so much about Guatemala. Most of it is, unfortunately, a little disheartening and scary. Que sera, sera.

But those things aren't what make or break Guatemala for me. Those things (some profound, some frustrating, some overwhelming) aren't what make me so inconceivably joyful. The responsibilities, and positive changes I'm making for the program, the opportunity I have to truly be involved in this program in a meaningful way... Those aren't the things that make me happy to wake up in the morning (well, happier... I'll never be a morning person).

The best part of my days, by far, is the moment I walk up the stairs to the second floor of Casa Jackson. I see the kids before they see me, through the colored glass square windows on the side of the stairs. I get to see the exact moment when they realize it's me and the happy grins spread across their faces. I get the hugs, the kisses, the cuddles. I'm one of the constants for them now. I'm not just another volunteer, who comes and goes in a week or two or three. I'm there. And somehow, they know it.

It's the simplest moments. It's standing in the laundry space, putting away tiny sleepers and onesies, and singing silly songs and hearing Alison giggle from her bouncy saucer behind me. It's when Estrella puts her feet up in the air during every diaper change so I'll make a phone call on her "piggy phone" (piggy toes, that is). It's the weight of Alberto's tiny, frail arms around my neck and his soft downy head under my chin. It's Magaly's giggle and clap and delight at being able to finally move around on her own. It's Alejandra's love for bubbles and the precocious little chatter that she bombards me with to get more. It's seeing Laura smile and hearing her laugh in between her dissatisfied, fussy-shrieking-mini-tantrums. It's  the quick smile and the sweet babbling that I used to get from Naomi when I leaned in very, very close to her face after a diaper change and smiled and talked to her in silly voices.

I can't know what it's like to be a mother. I can't know what profound bond comes of the experience of sharing your body with the tiny being growing inside of you.

I know only that the longer a child is at CJ, the more they become my own. My own flesh, my own blood, my own chid, my own vulnerable little soul that needs protection and nurturing. I am Mama Duck with her brood of ducklings in tow. I am directly responsible for the overall quality of their time at CJ. The medical staff will get them healthy, but it's my responsibility to keep them happy.

I don't take it lightly.

A Whole Different Ballgame

The changes in Casa Jackson, implemented since my last visit, are numerous. It seems many of the rules have become more lax, and there are now more volunteers allowed per shift. In some ways, these are great changes. Increased laxity with the rules means that the few rules there are ought to be more easily enforced and more widely followed. More volunteers per shift should equate to more hands on deck caring for the babies, and more time actively engaged with volunteers.

There also seems to be some confusion regarding what type of setting Casa Jackson truly is. The type of setting determines the rules. Some people, volunteers and management, view Casa Jackson as a hospital for severely malnourished children- hospital being a place where strict hygiene and infection control policies must apply at all times to protect the babies from further illness. Others view it as a place where babies are going to receive nutrition, love, and interaction with caring staff and volunteers.

These two views need not be mutually exclusive, but finding a "happy medium" seems to be an ongoing challenge at Casa Jackson. On one hand, relaxing the infection control policies has led to increased peer interactions amongst the babies; the babies are clearly more motivated to move and explore by each other than by any other adult. This bodes well for their development. The official abandonment of the "mask at all times" policy provides far more opportunities to model speech sounds for the babies, almost all of whom are extremely delayed in their expressive communication. With the increased laxity in these policies, the babies are certainly recovering in a far more "natural" environment.

Still, coming from a medical background, it feels wrong to give the babies here any less consideration in protecting them from infections and illnesses than they would be given in a US hospital. I'm very interested to see if there are more colds and stomach viruses going around Casa Jackson due to these policies, or if the relaxation of the rules doesn't affect the rate of kids getting sick at all. I do very much hope they aren't adversely affected, because again, it does feel like a less institutional environment for these kids to be in for several months at a time. I'm still conflicted.

Yesterday, I arrived at Casa Jackson a little early for the afternoon shift. Despite there being four volunteers signed up, there were only three of us there other than the nurses. With a full house of 19 babies, the absence of one person is definitely felt! There are a lot of walkers, crawlers, and scooters right now and it seemed like every step I took there were little hands and feet that had snuck up beneath me. While it gets a little harrowing trying to rush around and change diapers without stepping on anyone, it is wonderful to see the kids moving around and exploring as much as they're able to now.

Due to the short staffing, I stayed with Rafa through the afternoon shift, the dinner shift (a two-hour shift newly created to help the nurses during one of the busiest times of the evening), and into the evening shift. We left around 7:15pm. A six hour day may not sound very long, but with 19 babies who need to be fed, changed, fed, changed, and changed again, as well as held and rocked and entertained, and only five people (including nurses) to do it, six hours feels like sixteen hours. Sixteen wonderful, trying, heartwarming, frustrating, inspiring, fun, ear-splitting hours.

It's amazing to me how some kids are so resilient. Many kids that come into and leave Casa Jackson really do thrive. They don't seem to experience any horribly glaring residual delays, beyond the typical cultural differences that are often viewed as delays by foreigners assessing the skills of kids growing up in this culture. For those kids, Casa Jackson truly is enough.

It's the ones who aren't thriving, the ones who are sick and admitted for months on end, who can't sit up or stand despite being over two years old that worry me. The ones who are too weak to make any progress developmentally, and can't seem to make progress nutritionally either. I'm concerned about the lack of long-term follow-up for the kids. What happens to the kids who may get better medically, but whose parents can't afford to send them to school or the doctor? The kids who aren't visibly handicapped, but absolutely need support? The many, many kids who- once again- just fall through the cracks?

It seems I've given myself a new "to-do" on my list here...

Two Cute, Cuddly Little Puzzles

While every child seems to grow in leaps and bounds during their time at Casa Jackson, I can't help but be especially heartened by Alison's progress since I last saw her in April. That intense, serious stare she always sported still makes an occasional appearance, but she's so much more interactive and engaging now.

I brought Alison to the upstairs playroom with me to work with her and get a better sense of what her current skills actually are. Rafa filled me in on his biggest concerns for her: she rarely touches anything with her left hand and consistently pulls it away from any stimulus, and she doesn't seem to be making any sounds other than "puh puh puh."

My silent, pensive little Disney monkey has turned into a strong-willed fussbudget who very much has her own ideas about what she wants to do! Once I figure out what motivates her to really work hard, I think she'll make great progress. With an iron will like she's got, it's just a matter of convincing her that she wants to do the things I want her to do...

Regardless of where her skills fall right now, I am thrilled to see her smile and laugh so much. That one little half-smile that took a month to appear has blossomed into a toothy grin that she gives up easily. She was a little disconcerted being in the playroom upstairs, and pulled her hands away from all the toys I offered her. I decided to entice her with some good old-fashioned sensory play and we spent a good fifteen minutes taking turns slapping the giant therapy ball and making motorboat sounds (it's the simple things...). Alison imitated me readily, putting both hands on the ball, hesitating only a moment with her left before slapping it down next to her right hand and looking at me to make the silly sound.

After all the giggles, seeing that she was growing more comfortable, I decided to push her a little bit further. I sat her on top of the ball. She began to fuss and reach for my neck. I ignored the fussing, started to sing the ABC's, and began to roll her slowly back and forth, and side to side. It took a minute, but she began to enjoy this too, and wiggled her little body around whenever I stopped. I bounced her gently on it, making the same motorboat sound as before, and boy did she love that! Each time I stopped, she tried to imitate the noise and bounce herself until I continued to do it for her. As I rocked her side to side, she began to first put her left hand down, palm up, on the ball. After a few tips to the side, she began placing it palm side down. I'm feeling pretty confident that this left hand avoidance can be overcome!

Alison was none too pleased when I first laid her on her tummy over the ball, facing me, with her arms in front of her. All of the points I must have racked up in our fun just minutes before went out the window when I did that! It took a bit longer, but with more bouncing and rolling and silly noises, she enjoyed being on her belly, rolling forward and back, bouncing, and pushing up on her arms. She definitely hasn't been spending time on her stomach; her weakness and rapid fatigue are a clear testament to that. But, again, judging by her eventual acceptance and even enjoyment of it today, there's hope!

After a good lunch (during which she held her bottle by herself once I positioned her hands there and decreased my assistance from hands, to wrists, to elbows, to none), I brought her back downstairs and put her into her crib with a toy across her lap. She enjoyed exploring the toy with both hands, pushing levers and opening little doors. She continued to smile at me every time I went back into her room to change a diaper, chase a runaway toddler, or grab more diapers or wipes. She definitely has something going on, but I'm feeling good about the direction she's heading-- up.

I spoke with Rafa about another little girl, Joanntoni:

Joanntoni  has issues with her legs and feet, though no one knows what they are. Joantonni walks with her feet turned slightly inward; standing above her and holding her hands while she walked, it appeared almost as if her hips and legs were rotated slightly to face to the left rather than straight ahead. Her legs are extremely slender, but muscular, unlike the stick-thin, fragile limbs common on some of the older toddlers. She can walk with hands held, but she puts a lot of her weight onto her arms. She prefers to ring-sit and scoot around that way. Joanntoni was willing to pick her feet up individually to take a step up, but threw her torso back onto my arms to avoid putting weight on either leg individually.

She's definitely an interesting little one. Apparently she had an X-ray recently to try and determine if there were any abnormalities, but nothing showed up. I'm hoping she may be able to get in with an orthopedic specialist soon.

I also had a chance to speak in a bit more depth with Heather, the new CJ volunteer coordinator today. She echoed many of the sentiments I've had for awhile regarding the missed opportunities that exist in terms of using the volunteers to their full potential, and ensuring that the kids are getting the most benefit possible while in Casa Jackson's care. She seems eager to get more training and orientation for the volunteers, so I will be trying to put together some basics and work together to determine the best way to identify and communicate with volunteers who want to be involved in a more complex fashion than just coming, caring, cuddling (all very important, but not the whole picture!) and changing diapers. I'm excited to finally get going on this aspect of the project I've had in my head for the past six months!

Corinne and I took a lovely walk up to Cierra de la Cruz this afternoon. It's a very do-able trail of steps leading up to the top of the mountain that our apartment is on the side of; we actually can see the backroad to it from our front window. We went up the safer "tourist path" and enjoyed a beautiful view of Antigua, complete with cloud shadows, clouds blanketing the tops of the volcanos, and the stunning view of the entirety of Antigua laid out beneath us. I find myself having at least five moments each day where I can't help but feel so very lucky to be living in such a beautiful place...

Mi Chiquita esta Gordita!

I walked to each doorway, peeking into the rooms. Every crib held a little sleeping body, bathed in the mint-green sunlight reflected off the painted walls. Tiny limbs poked through the bars of some of them; dark fuzzy heads were visible beneath blankets in others. I scanned each room quickly, looking for familiar faces.

I strode across the small hallway, towards the rooms that always seemed to hold the babies nearest and dearest to me- Sandra included. The children with special needs always ended up in there for one reason or another. I had decided to look in that room last. I knew from speaking to Juan Pablo that Sandra was gone, as were almost all of the others.

An additional crib had been wedged into the room, crowding the small space even further, and complicating my efforts to peek inside each crib without waking anyone. I spotted Magaly, sleeping soundly in the corner crib, curled up on her side with one shoe on and one shoe off. Her shiny black hair hung straight across her face, obscuring my view of her almond-shaped eyes and petite nose. Only her tiny pink mouth peeked out.

The crib to my left held a healthy-looking girl with familiar features. I took in her large ears, beautiful eyes, button nose, rosebud mouth, and full cheeks. She looked at me, smiled, reached her arms up, and began to fuss. Could this be the same little girl I spent an entire month coaxing just one smile out of? The little girl who was so disinterested in people and toys? The little girl who was so frightfully thin and frail just two months ago?

I reached my hand between the bars and stroked her cheek.


Alison. Chica linda, tu me recuerdes?    She briefly stopped fussing and looked at my eyes before continuing her impassioned treatise for me to pick her up.

As I lifted her from her crib, I was delighted to feel the weight she's put on. Compared to her former self, she's downright chubby now. Compared to a typical American baby, she's still likely a bit underweight.

Developmentally, she has made some progress, though she continues to present with very significant delays. A fellow volunteer reported that they feel she may have autism, although I don't agree. I still feel strongly that there is an underlying issue impacting her development beyond "simply malnutrition," but autism it is not.

Alison is still a timid, cautious baby who is reluctant to touch toys and fully explore them, but she displays some promising progress in her social skills. Alison frequently made eye contact with me; she delighted in watching me pull Legos apart and made eye contact expectantly when I paused between each block as if to say, "come on! do another!"

She is aso beginning to initiate play, though only in the few activities that she seems to prefer. She showed a particular affinity for the Sesame Street Shapes board book I had donated during my last tenure as a volunteer, and loved to turn the pages and point to the pictures. When I put the book down and tried to move to different toys, she several times handed me the book, made eye contact, and fussed until I began to read it again. Her social skills are delayed, but no more than her play, motor, and cognitive skills appear to be delayed at first glance.

At such a young age (under two), given her global delays, I think it's impossible to look at her and say with any certainty that she could have autism. Is she off? A little funky? Absolutely. A lot of parents and caregivers become concerned with autism if a child isn't interacting as they should socially. If all of a child's skills are at a certain level, consistent with their general development, the delays in social functioning are likely reflective of a bigger issue, rather than the sole issue impacting them.

A very well-respected doctor with years of experience diagnosing autism in children under age three delivered a presentation at the hospital I used to work for; the most prominent marker she noted for autism at that young age was a lack of initiation of social interaction. Alison makes eye contact and engages in reciprocal interactions and, although unable to communicate verbally in any effective way, does attempt to initiate those interactions.

For those wondering how Magaly has fared since her surgery- quite well! Her mother wasn't at the center, and I'm hoping that she is safe and well considering the domestic abuse she was staying at the center to avoid in the past. Magaly's legs are certainly stronger then when I left; the muscles holding her femurs into her hips are tightening up and she isn't so loosey-goosey legs out wide all the time any longer. She can stand with assistance and loves taking slow, laborious steps when held beneath her underarms to get toys from the basket (which we did a lot of today!). She fatigues easily, but has come so far from the little girl in the giant cast that she once was. I can only imagine the freedom she must feel.

There aren't currently any children with cerebral palsy or any obvious neuromuscular issues, but I imagine there are at least one or two like Alison.  I have to admit that I spent much of my time today with her, "catching up" and bonding again. I've signed up for a few shifts over the next week to ease back into things and hopefully get a better sense of where the kids are, developmentally speaking. There are 19 kids there now- a full house! Pictures soon- I promise. :)

My visit to Casa Jackson, while a welcome one for me, was rather unexpected. Intending only to meet the new coordinator Heather and discuss joining the volunteer schedule, I had walked to Nuestros Ahijados after lunch and found myself waiting at the entrance to Nuestros Ahijados with the afternoon volunteers when Megan and Heather arrived at the gate. Heather had been mugged on her walk back from her apartment in La Candelaria, in the southern part of Antigua. She was visibly shaken and would not be going to Casa Jackson just yet. 

Megan asked if I could take the new volunteers to Casa and run them through the brief orientation. Just like that, I was walking down the dusty road that stretches from Antigua to Jocotenango, talking to a high school senior traveling with her mother who was interested in pursuing a career in physical or occpuational therapy upon graduation, describing the myriad of issues that the kids at the center often present with. It was almost like I'd never left.

I did have an opportunity to speak with Heather when she arrived, looking far less distressed, later in the afternoon. Heather mentioned that her primary interest is actually in community outreach and working directly with the families rather than just the volunteers and institutional setting. She said she saw no issue with me working on implementing some training for volunteers whenever I was ready to do so, and fully supported any community visits I may want to set up. While I thought that would be the case, it's such a relief to get the official green light from the new coordinator- and also to learn that she sees the community work as as much of a priority as I do.

Casa Jackson- game on. :)