First, the good news: Maria Guadalupe and Maria Jose, the twins left at Nuestros Ahijados after their mother passed away, have already been linked with an adoptive family who will be taking them once they are healthy enough to leave Casa Jackson and the legal issues are worked out. I peek in on them everyday, and they are still tiny, still sweet, and are sleeping and eating well.
In less cheerful news, a ten-year-old girl, Josefina, was brought into Casa Jackson yesterday. Josefina is about the size of a sturdily built five year old by US standards, and has a cognitive age of about 8-10 months. This is my knee-jerk estimate from interacting with her over the past two days, and is subject to change. She is nonverbal, lies curled up in her crib sucking her thumb all day, and is ambulatory, although she doesn't move around unless prompted to do so. She gives a genuine grin to anyone who takes a few moments to talk to her, and it seems that her social skills may be one of her biggest strengths. She also has the worst burn scar I have ever seen on a child, stretching across the front of her entire torso, from her shoulders to her hips.
I had just entered her room and took the side of her crib down to talk to her and give her some cuddles and attention. She lifted the edge of her shirt up with her free, non-thumb-sucking hand, and I shuddered reflexively. I lifted her shirt up higher, revealing a rippled, warped mass of scar tissue that, at first touch, feels more like that of a crocodile than a child. I put my hand on her cheek and muttered aloud, to myself more than her, "What happened to you? What happened?" and began to tear up. She, clearly oblivious to the old scar at this point, grinned at me and continued grinning as I stroked her cheek and felt a few tears fall from the tip of my nose. Her father did visit her today and take her out of her crib for some hugs and tenderness, so I'm trying to not be too disheartened for her.
Gricelda's father also visited her today. Gricelda is a beautiful little girl with almost no functional skills whatsoever. She is able to be relatively safely fed without aspirating; she has no functional use of her arms or legs, no functional vocalizations beyond crying, and can not see or hear. For a family with limited education and limited resources, Gricelda is a massive challenge, and one of those children that would be an easy and likely target of neglect or abuse. Every week, her father comes to visit her, and watching him with her does a great deal to minimize my concern. He may not know what to do with her therapeutically (and honestly, that makes two of us), but he clearly adores her. He holds her, cuddles her, speaks tenderly to her, feeds her, changes her clothes, and kisses her cheeks. If I had to choose between a parent who would follow through on all of my therapeutic recommendations and a parent that would adore their incredibly impaired child as much as he does, I would choose the latter for any child in a heartbeat.
Sandra's grandmother also visited her today, shortly after a delightful half hour in which I had the pleasure of giving her the morning bath and teaching her how to splash (sorry, Casa Jackson nurses!). Though I didn't know it until it happened, I really needed to see a family member come and love her and hug her and kiss her and adore her. Sandra's family visits infrequently; her father has never come, and her mother has come only once. Before any judgments are made, it is incredibly difficult for many of the parents to visit their children due to the intense work schedule of an unskilled laborer that must work whenever there is work, if they have any desire to eat or be able to stay in the dirt-floor shack they live in. Sandra's grandmother, like Gricelda's father, didn't appear to know a lot about what to do with her, but she clearly relished the cuddle time and opportunity to give Sandra her lunch. I have some comfort in knowing that Sandra has at least one family member who adores her. Hopefully all three do, but at the very least, I can sleep knowing that she's got her Abuelita.
Thankfully, Rafa, the Spanish nurse, and Juan Pablo, the young Guatemalan director of Casa Jackson, were both present this morning. We held a spontaneous family education session, discussing and practicing with Sandra's grandmother the exercises I had been doing with her, the importance of using positioning and a cautious approach in her feeding to minimize her aspiration, and my general impressions of Sandra's skills and ways to her support her when she goes home. Her grandmother was wonderfully receptive and asked some great questions. At one point, she marveled at how much more relaxed and open Sandra's hands were and how much better she was able to hold her head up. Rafa said to her, very gravely, that if not for the work I had done with her, she would likely not have made that progress. He impressed to her the importance of trying to continue stimulating her development and maintaining that momentum. I don't know if I deserve all of the credit for Sandra's progress; as she recovers from her malnutrition, she likely will continue getting stronger and improving her skills; deserved or not, the praise was really touching.
As Sandra was occupied and I could leave her without sending her into a fit of tears, I worked with some of the younger babies who are massively delayed as well. Selvin, a very funky little guy who holds his arms up at shoulder height most of the time and will throw himself back as soon as he reaches an upright seated position, was a tough sell but with enough songs and expert distraction I had him on his tummy, on his hands and knees, and sitting to play with toys for a few minutes at a time.
After lunch and naps, it was more work for Sandra; more group playtime for Sandra, Magaly, and Selvin, all sitting together on the mattress in the main room, and finally time for afternoon bottles. Someone put the tiny little Juan Antonio (weighing in at about four and a half pounds) next to Sandra and I while I fed her her Pediasure. Juan Antonio spent the time working his tiny little fingers under my scrub top, scratching my stomach, and giggling. He's about three months old and I can't quite fathom what about this amused him so much, but it was wonderful to see him out of his crib and having fun. I played peek-a-boo with him, popping my head out from behind Sandra, and he rewarded me with a few very goofy smiles, made goofier by the hysterical hair he was sporting after sweating through his nap while laying on his side. Bedhead to the maximum.
Diaper changes, pajama time, and laying down for bed were as gutwrenching as usual. Sandra has really kicked up her protests when I put her down now, and it does make it harder and harder to leave her. I've found that, as with many children, the best approach to minimize the amount of time she cries is to give her a hug and a kiss, lay her down, promise her I'll be back tomorrow, and walk out of the room. Her cry has become deafening, to the point that I heard her crying as far as a half block away from Casa Jackson as the escort walked us back to Nuestros Ahijados.
While I feel bad, as if I've somehow "spoiled her" by giving her so much attention, I can't help but remember what I've noticed with so many children with cerebral palsy who have impaired communication. When there is a person who understands their needs and preferences, who plays with and interacts with them in a way that includes them in the fun and allows them some real participation, who responds to their vocalizations as if they were really words and not the "ooohh" and "ahhh" people around them are hearing, they do become incredibly attached to that person. That person, or those people, become that child's safety blanket. Picture if you were dropped from the air into Iceland. You spend weeks wandering around, confused and frustrated because no one understands you and you don't understand them. They're nice, sure, they try to help, but you ask for the bathroom, and they give you a sandwich. Eventually, you run into another person who speaks English, and ALSO speaks Icelandic! What luck! Wouldn't you be keen to stay close to them, as well? I sure as hell would. It's the same for many kids with special needs who are cognitively intact enough to know that they are being misunderstood or ignored by many people around them. If you seem to understand their language, they aren't about to let you get too far from their sight.
This evening, Ray and I met another volunteer, Charlie, at the Rainbow Cafe to see Luke (the director of sorts) speak about Nuestros Ahijados and the work they're doing in Guatemala. He told a few very poignant stories about six sisters rescued from a garbage dump that was constantly ablaze from combustion fires and covered in ash from the nearby volcano; about the nine-year-old she-shine boy who was foundliving under a park bench and brought to the center, who is now the lead pediatrician at the biggest hospital in Guatemala; the first children saved by Casa Jackson two years ago. As I sat eating my humble dinner of arroz con frijoles, I was struck with such immense joy at having the opportunity to be a part of this amazing effort. The dedication and careful consideration of the foreign and local staff at Nuestros Ahijados, from the top down, is reflected in the incredible success rates of their programs in truly helping the children and families served; there is no "revolving door" of clients here, save for those who leave a program and return of their own accord.
Something Luke said struck me. It was another thing that, like Sandra's grandmother's visit, I didn't realize I needed so badly. Being here is wonderful. It is amazing. There is nothing I'd rather be doing with my time. But it is not easy. It can be a joy, but the depth of the joy I feel in some moments is equal to the depth of the intense heartache I experience in so many other moments. It's hard to see such injustice and unfairness and pain in little children's lives without becoming disheartened and angry and frustrated and bitter in some way. It drives you to work harder and be more dedicated, but it hurts. It takes its toll.
Luke explained to the small crowd (paraphrasing to the best of my memory): "Doing this kind of work, you can't count the failures. You have to count the successes. You have to do everything you can for all of them, but when a child or family walks away, when you lose one back to the streets and can't find them again; when a child passes away because we got them into the malnutrition center too late; when a little girl ends up working in prostitution on the streets despite our efforts, you have to let it go. You let it go, and you look at the ones you've helped. There will always be failures, and it will always feel like no matter how many you help, there are so many you couldn't. So you count the ones you did help."
Sometimes, we don't know who we've helped or what we've done. I think often, we won't ever really understand if our actions and efforts resulted in some benefit reaching beyond the present moment. We have to give it our best and know that we've done all we can. I've known this; I've felt this; I've said this. After years of doing similar work and similar projects, I still need reminding.
Last night, I laid awake until 1:00am, scribbling furiously in my journal that I couldn't stomach a world that let so many little, helpless people face so much pain; that I loathed any supposed god that would allow a child like Sandra or Gricelda grow up anywhere else than with at least one parent that would love them, sing them songs, cuddle them to sleep, and cherish them. I was angry at the injustices I see everywhere I look here; angry that I couldn't do more; angry that everyone else wasn't as angry as I was; angry that no amount of anger could change it; angry that despite my best efforts, so many kids would still suffer in so many places.
Amy, I cried all through the reading of this post. You write with such clarity and heart.
ReplyDeleteI am keeping you and all the children at Casa Jackson in my daily prayers. Never doubt the importance of your work; the outcomes don't matter as much as the support, love, and tenderness you provide moment by moment. I am soooo happy to know the preemie twins have a home to go to.