Every Friday, Nuestros Ahijados stages a distribution of donated vegetables for the family of every child involved in their programs. The donations collected from local farmers are organized and sorted, portions of rice and beans are bagged, and parents, grandparents, and caregivers pass down the assembly line of volunteers doling out portions of each vegetable. My morning began at the head of the distribution line, handing out yellow beans and heads of lettuce.
As the women (and some men!) passed through the line, I greeted them and asked how they were. Many gave the touching reply that they were doing well, because they were their receiving food. Several baskets of beans had begun to spoil, and I tried to pick out the rotten ones in advance. The director of the operation explained that some families would choose to eat the spoiling ones as well, so to leave them in. Some of the lettuce was wilted and the outer leaves turning rotten. I apologetically handed them out to women who received them excitedly, discussing with the women around them how they would be eating lots of salad this week. It was humbling, to say the least.
After the lettuce and beans ran out, I joined the Bolsa Escolar effort, which assembles bags of school supplies for every child attending school at the program. I joined the line of volunteers packing bags for the middle-school aged children. Every child received 50 sheets each of lined, graph, and blank paper; a total of seven small notebooks of lined, blank, and graph paper; another notebook, three file folders, an eraser, and a pencil sharpener; two blue pens, two black pens, a red pen, and four pencils; crayons, colored pencils, scissors, and glue. I wish I could see the children's faces when they receive their bags. I remember my excitement at going back-to-school shopping; these children would not have shiny new notebooks and colorful boxes of crayons and pencils if not for the generosity of Nuestros Ahijados and their commitment to supporting every child's education, both in and out of the classroom.
As I returned to the office to refill my cup of coffee, three police officers walked through the crowded center of the campus. One of the other volunteers informed us that the center received a set of two month-old (and three months premature) twins. Their mother had passed away, and their grandmother, who was unable to care for them, offered to "gift" them to the center; as in, give them in exchange for a small sum of money. The girls, weighing only three pounds each, were taken directly to Casa Jackson.
I headed to the Casa just before eleven for another lunchtime session with Sandra. As always, she greeted me with a smile and a giggle, and immediately began 'talking' to me. I picked her up for kisses (through the mask, of course), and she opened her mouth and turned to me to give them back. I changed her diaper, and we went upstairs to play until lunch. She was in a particularly giggly mood and clearly feeling very silly. It was difficult to get her motivated for our routine of tummy time followed by sitting with support. She thought it was positively hysterical to tip her head back and fall onto me as I sat behind her. Eventually, I abandoned the effort, and focused on trying to encourage her to use her arms and hands for play.
I leaned back just a slight amount, supporting her torso and head against my body, and placed a squeaky elephant on the pillow across her lap. I brought her hand to the elephant, put it into her grasp, and squeaked it as I lifted it up and made an elephant sound. After a few times, I told her to touch the elephant for 'more.' Sure enough, with a little blocking at the elbows to help her reach towards the middle, she stretched those little arms, opened her hand as best she could, and rested it on the elephant's head. She was so excited about this game, and the grin and giggle she gave each time she touched the elephant and we lifted it and squeaked it in the air together were full of pride. She knew that she had done it.
Lunchtime was another uneasy, guilt-ridden meal- for me. Sandra's cheerful demeanor remained. Sandra, like many children with cerebral palsy, aspirates when eating or drinking thin liquids. This means that some food or liquid enters her trachea instead of her esophagus. Aspiration poses great danger to a child with cerebral palsy. These children have diminished lung capacity due to decreased mobility, and are less able to cough forcefully to clear any errant food or drink from their throat. Aspirated food or drink can sit in the lungs and, especially with the onset of even a slight respiratory illness, lead to a case of aspiration pneumonia. This can, and is, fatal for many children.
Some children aspirate silently. Some exhibit the tell-tale signs of aspiration; coughing, gurgling sound in the throat when breathing, and/or red or watering eyes. Sandra exhibits all three. Unlike the children I've worked with, Sandra does not have access to a swallow study, which assesses the level of aspiration, and the level of thickness required in a child's food and drink to minimize it, or the commercial thickeners commonly used. She is also generally fed in a reclined position, leading to even more of an increased risk of aspiration.
I propped Sandra up in a saucer seat (sort of like a walker, but with a round concave piece on the bottom so the child can't actually move around at all), stuffed rolled blankets in front of her and a pillow behind her, and propped her little forearms on the blankets in front. Something about seeing her little arms crossed, with her sweet little hands resting open on top of her forearms, makes me just absolutely weak and silly over her. I don't know if it's because she sits there happy as a peach and saying her "ahhhs" and "ooohs" to me, or if it's because she looks like the growing little girl that she is instead of a helpless baby. Whatever the reason, I absolutely love sitting her up.
She ate well, losing less food due to tongue-thrust than during a typical feeding at the Casa, as I waited until she opened her mouth wide enough to put the spoon over her tongue before putting it in her mouth. She gurgled and coughed a few times; I waited until her voice sounded clear again before giving her more bites. Keeping her well-supported while eating and feeding her more slowly and carefully is absolutely decreasing the amount that she's aspirating; the challenge will be convincing every nurse at the Casa to adhere to this feeding set-up.
I returned after the babies' naps. Sandra and three tiny little baby boys were laid out on the mat in the playroom. Sandra grinned and giggled at the sound of my voice. I said hello to her and went to find a nurse to ask what I could help with, as there is often cleaning to be done before playtime. The nurse was in the room with the tiny new twins; Maria Guadalupe, and Maria Jose. Both unbelievably small. These are babies that, if born in a developed country, would have spent a fair amount of time in the NICU. How they survived to see this day, born three months premature and presumably smaller than the three pounds they are now at two months old, is incomprehensible. They are strong little girls. They will need that strength as they grow older; they will most likely spend a significant portion of their childhood in an overcrowded orphanage.
One of the newer volunteers was having trouble feeding Maria Jose, and asked me to try. I sat down with her and somehow managed to get an entire (small) bottle into her. I looked down at her as I fed her, heart heavy as I thought about what had just happened to this little girl and her sister. I spoke softly to her. She spit out the bottle, and I burped her. As I laid her back down in my arms to feed her again, I continued speaking to her. She looked up at me, searching my face with her barely open eyes, and... she smiled. It was beautiful. She smiled again a few minutes later as I sang to her. With that little rosebud mouth, she unwittingly reminded me- don't ever give up hope for any child. Ever. I rocked her to sleep and laid her back down gently next to her sister.
It was time to feed the older children their afternoon bottles. I scooped Gricelda up from her crib. Andrea, the volunteer coordinator at Casa Jackson, had spoken with me at lunch regarding my concerns with Sandra's feeding, and I wanted to assess Gricelda's safety during feeding as well. Despite her higher level of impairment, Gricelda appears to feed more safely. She coughs occasionally, but the wet gurgle that is omnipresent throughout Sandra's meal is rare. I am, however, concerned that she may be having seizures. Several times during the meal, she cried softly for a moment, then rapidly jerked her head to her right as her eyes shook side to side. By the end of her bottle, she was falling asleep. I laid her back down.
Sandra, ever-awake and ever-ready to play, went rigid with excitement as I approached her. The volunteer holding her gave her some hugs before handing her over for more 'exercises.' As I picked her up, she folded in half and positively erupted in laughter. Trying to lay her, on her stomach, over the exercise ball was no easy feat. Her knees curled up to her chest and she went completely limp as she continued laughing. Eventually, I got her uncurled and over the ball. She was not too interested in pushing up on her arms to look around, until little Magaly took an interest in her.
Magaly, sitting on the lap of a nurse in front of us, gladly complied with my request to sing, clap, and talk to Sandra. Sandra absolutely loved it. Watching the two of them was wonderful. Often, the children have minimal real interaction with each other despite being in the same room almost twenty-four hours a day. In front of me sat these two little girls, both around two years old, both struggling with different health and physical issues, taking such delight in each other. Another special moment at Casa Jackson.
In the afternoon, the children are changed, put into pajamas, and laid in their cribs to sleep. Despite the fact that many of the children at the Casa are under 6 months old, they all seem to understand that this is the point after which the volunteers (the "snugglers") leave. Sandra is no exception.
I changed her diaper and began putting her pajamas on her as she laid in her crib. I tickled her; she talked to me. We played peekaboo with her shirt, we sang songs. As I snapped her onesie, a nurse came into the room and informed us that the escort from Nuestros Ahijados had arrived to bring us back to the main campus.
I looked at Sandra. Sandra looked at me. I picked her up, held her for a moment, rocking side to side, giving kisses and snuggling her for just another minute. As I laid her down in her crib again, she began to tremble as she stared up at me with this desperate, pleading look. Her little body shook, and her legs went rigid as she realized that yes, I was leaving. She began to cry. I put my hand on her cheek and left it there for a moment, talking to her. She stopped crying, but continued to tremble. I gave her one last kiss, put the side of the crib back up, and she began to wail. Although we've been through this several times, it isn't any less gut wrenching to see on a child's face the exact moment they realize you are leaving them. These aren't babies who have mothers to cuddle, rock, and sing to them before bedtime. These are babies who are laid down to sleep in a room with other crying babies, and must cry themselves to sleep as well.
Every day, the walk away from Casa Jackson becomes harder, and harder... and harder.
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