The first thing I learned when I started working in hospitals was that
The more you want to help people, the more you are exposed to people and situations that you cannot help.
That's a pretty hard lesson for an 18 year old to begin to learn. Really, it's a continually hard lesson at any age.
Moving to Guatemala, I knew things would be challenging, but I didn't prepare for the new, sharper reality of that truth. Months working with some families may yield no visible health change. Loving some families for months may show no relational growth. I often share with visiting teams that wether through medical clinics, food distributions, sponsoring kids, or building projects, it's like trying to fill an ocean of need with an eyedropper at a time.
It's all too common to say "I'm sorry, we can't take them, we are already full" or "I really wish we could, but we don't have the manpower to start working that far out yet". Harder still are the weight of family who have lost children, friends who have more recently lost children while walking massive health challenges, and siblings, who have been pouring themselves out for their daughter whose critical situation lingers week after week, month after month, and now for years. It feels like there will never be a victory here. It's exhausting.
Life is heavy. God is still good.
In all the heavy situations where it's hard to focus on the wins. So I want to take a moment and do that!!
Her name is Jenny, and she is a wild one!
Jenny came in September 2020 from another home. She has downs syndrome, is underweight, and we suspect could be on the autism spectrum. They loved her, but her challenges were more than they could handle, and we soon learned why! See, Jenny hated eating! Every time a bottle touched her mouth, it would trigger painful spasms and the screaming would ensue. She associated a bottle with pain, and would grow tense and anxious at the site of it. So before a feeding even started she was upset. Out of 3oz, she would often vomit the majority due to spasms, or tense muscles during anxiety, so one once retained was a good bottle.
This was discouraging for sure! How do you feed a child who hates food? Jenny went to all the doctors, and consults were made on her behalf nutritionally. The neurologist was pulled in to help with the spasms. In time, she no longer had spasms, but her memory of pain never left.
She was used to the sensation of hunger, and had no desire to eat. Slowly she tolerated a little more at a time, and after a brief spell with an NG tube, her stomach learned that feeling full feels good. Her weight has been closely monitored, and I admit at times was so discouraging as she never gained-- or not much.
Jenny is spunky and wild! She also has so much joy, and so much attitude! She quickly found her favorites- the people she would willingly eat for. If you were not one of these, you would not be helping her, no thank you! Even if she would let you feed her, it had to be an energetic, happy, and very patient experience. Any hint of frustration, and she would shut you down!
Later than most kids, we started introducing spoon feedings. She was not a fan!! She would purse her lips and throw or smear the food everywhere but in her mouth! We were encouraged that this is a normal step, even in older kiddos, so we kept at it.
Several bottles a day she was set up with a little food that she would rub in her hair, on the chair, or drop to the floor. Spoons were met with pursed lips and either mischievous or frustrated eyes. It was months before I looked over and the little goop covered wild child let her food covered hand wander into her mouth and did not spit it back out!!
One evening, she was eyeing my snack while we cuddled on the couch. I gave her a piece and she put it in her own mouth, chewed and swallow it-- then began reaching up for more!! A great new day was dawning! She started allowing spoons into her mouth, grasping cherrieos, and enjoying small cut foods of all kinds! She does still throw a lot into the abyss!
Along with these changes at mealtime, we began to see physical changes as well.
Initially, we were not sure if Jenny would every walk or crawl because she has such low tone in her muscles, and has been so underweight. However, she soon showed interest in mobility and mischief! She started scooting on her belly after people or toys. Along with lots of intentional time in therapy, she began on her own to draw up her knees, then even lift herself up on skinny shaking arms.
In time she discovered that mobility is very fun, and started crawling! It was a little mind boggling to see such a small, skinny little lady moving with fast but jerky movements, never bending at the elbows but rather lifting and smacking the floor with each advance. She liked the freedoms and disliked the boundaries she now had to learn (like the line in the kitchen keeping kids away from he oven).
She then began to climb! You would not believe what this little wild one would climb considering the thinness of her arms! She pulls herself to standing, then the rest of her follows! She even tries to climb out of her crib!
Jenny discovered a toy she loved more than anything. She would disappear for a bit, and come back having found the doll stroller. This she would drag to the living room and shove down the steps ahead of her. Then she would follow, draw herself up, and begin walking with the stroller! Therapy grew more exciting as she practiced with a walker and braces.
All that is amazing, but here is the exciting part!
Jenny has begun to eat enough spoon food or finger food, that she can replace a bottle a day with it! She has started sitting with the family at mealtime while playing with and eating small portions. Her weight has begun to increase at a faster rate than ever, and her interest in moving and getting into mischief has led to more and more time walking with people, walker, or stroller. This little one wants to go places, and she will!! Now we just get to watch her grow!
With so many heavy things, it's easy to miss how important Jenny's slow victories are. But when she came, she was malnourished, anxious and fearful of food, and vomited most of what she would eat. Now she (mostly) tolerates, even at times enjoys bottles, and likes exploring messy foods while eating some on her own! She is motivated to move, and is gaining weight!
So many people have worked so hard with and for her. So many more payed for her. We praise God for how far she has comes and how far she will go! Look out world, this one's unstoppable and she has mischief to get into!
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