I woke up on Tuesday and readied myself for the new day in the early morning. While I had slept, my mind must have continued to process all it had taken in the day before, both what I have written about here on the blog and what will have to remain unpublished. In the pre-dawn quiet, with my little Bible still open to the Psalm I’d read over and over the night before, God made one thought crystal clear to my mind.
My agenda. Not Susanna Musser’s agenda.
As my traveling companion and I waited for our taxi out in front of the hotel with our translator Maggie, a gifted, sensitive and tender-hearted young woman, I explained it all to her, and asked her not to feel pressured to ask the questions on the list. We’ll walk through the doors God opens for us and see the people God brings to us. No pushing. Let’s wait and see what God will do.
In this manner we move through the rest of the week, consciously living in the moment of whatever God unfolds for us.
We’d found out the previous afternoon that right after breakfast each weekday, Tommy spends a couple of hours in a little “school” class. I’d heard about this class and was eager to witness it for myself.
As I walk into the tiny classroom, another wave of emotion rolls over me as I look around the small table and recognize every face. Every one a miracle child who by all human logic should not have survived to see this day. Two miniature older children with beautiful almond-shaped eyes, one entering the teen years and the other somewhere close to the age of sixteen. Three other small older children, all with loving parents working hard to bring them home.
And Tommy, beloved son of my heart.
If the Lord wills, four of the six children in this room will not be here before the year is out.
The only play Tommy has so far mastered on his own is to shake a toy that makes noise. Over and over again, picking up a toy, shaking it and laughing at the noise it makes, abandoning it before too long if it’s silent. Does this make me feel sad? Quite the opposite! The fact that he is picking up an object and holding it in his hand for any length of time is cause for rejoicing! I see immediately that the fact that he is willing to interact with toys and that he has few sensory processing issues will help him progress more readily, despite the significant physical and cognitive damage that was done to him for many long years.
You’ve already seen the video my friend captured of Tommy on this particular morning.
I work with him for half an hour on container play [purposefully releasing an item into a container] with auditory feedback [it made a satisfying noise as it hit the bottom of the container], using consistent verbal cues [“Drop it IN, IN the cup!”], exaggerated demonstration, and hand-over-hand instruction [my hands guiding his hands to carry the task out successfully, so he could get the feel for what to do] when he suddenly catches on! He goes from clueless to nailing it in only half an hour! I can hardly believe my eyes, but with prompting, he does it over and over again, proud of his new accomplishment!
Today the children receive gift-wrapped, lovingly-packed shoe boxes from Samaritan’s Purse, filled to the brim with many small objects.
We enjoy watching them explore their boxes, although we know that even the very few items which are actually developmentally appropriate will not stay with each individual child as his or her own possession. That is just the current reality of life in Tommy’s orphanage as it is in many others.
We interact with the children and glimpse the skills that flash through the obvious orphanage behaviors and significant developmental delays. I feel awed by them and as proud of every discovered accomplishment as if they were my own children.
We are careful not to overstep the boundaries by taking photos of the other children, but we are kept busy helping all six children stay gainfully occupied. The child who is the most developmentally ahead is obviously bored from lack of appropriately challenging activities, while some of the children are barely able to focus their attention on an object for a few seconds. Some children are constantly focused outward, some inward.
We observe the efforts of the teacher to keep each child seated and occupied. She is a kindly older woman who often resorts to singing loud, cheerful children’s songs, usually while holding or clapping the hands of the most restless of the children, or having them shake instruments. Sometimes there are hand motions that go with the songs, and we see a couple of the children respond with the correct hand motions.
“Tommy, squeeeeeze the duck. Squeak, squeak, squeak, says the duck.”
“Here’s this lady again. Who is she and why does she keep showing up?”
We see into the teacher’s supply cupboard. Of the sparse items in the cupboard, she is very proud of and grateful for a simple pop-up toy, because it encourages the children in their fine motor skills. There are a few puzzles, especially a nice wooden stacking puzzle that one small boy works almost obsessively, getting it right every time. Not surprisingly, an idea begins to grow in our minds.
But more than anything, I wish I could convey to you…
The children are so alive.
So complete in their humanness.
And there is such an unutterable, untouched sweetness looking out from the souls of these children the world says are so broken.
It is obvious to us, however, that our presence has caused the children to be more restless, and we tell the teacher we know we have just made her job all the harder. We thank her for the good work that she is doing with the children, and for allowing us to participate. We reassure her that we won’t be disrupting her class every morning that week, say our goodbyes, and make our exit.
During the long meeting with the director that comes next, we bring up the idea that had taken root in our minds during the “school” class.
[Note: Joe and I had ordered Euros from our bank to match the suggested adoption travel expenses only to discover afterward that we still had a significant sum of Euros left unspent from our last trip to Europe. We decided to donate the total of whatever was left after my simple needs for the week–taxi and bus fares, one modest meal out each day for my friend and me–had been met. On top of this, enough people contributed generously to a financial donation for the orphanage that we went to Tommy’s orphanage bearing a satisfyingly large sum. Good friends in the capital had helped us convert dollars and Euros to the local currency before we traveled to Tommy’s city. For those interested in such details, Tommy’s country is part of the European Union, but has such a weak economy that it wouldn’t survive a transition to Euros, so the local currency is still used.]
During the ensuing discussion with the director, she informs us that the orphanage is unable to receive a cash donation, so she will find out the areas of greatest immediate practical need that correspond to the donated amount. More about this, with photos, are destined for the next several journal entries.
We find that the director has come to this meeting with two main purposes.
~She wants to explain Tommy’s medical records, including testing and treatment he has received in the hospital, as thoroughly as she can.
She tells us that she is not convinced of all the diagnoses that have been given to him, and explains the testing she had ordered for him, for which she is still awaiting results.
~Knowing our experience with an older child who spent most of her life, from birth, undergoing severe neglect and malnutrition, the director wants to hear every detail of what we have learned that could possibly be useful for the older children in Tommy’s orphanage who have experienced similar mistreatment.
Did you pray for open doors? I have longed for this opportunity for a year.
What follows becomes the first of countless teaching opportunities we are given throughout the remainder of this week to explain severe osteoporosis in picturesque detail, and the paramount importance of handling the older children according to the protocol for extremely fragile bones. We teach and demonstrate with intensity, all the more as we have multiple opportunities to witness improper and ungentle handling of children. All but one set of ears who hear our talk are painfully aware of how we obtained this knowledge, and it gives our presentation credibility and greater emphasis. Our translator Maggie becomes so adept at the osteoporosis/fragile bone talk that near the end of the week she doesn’t wait for us, but launches right into each new opportunity, adapting her words skillfully to each specific audience.
This information is being followed up with a summary for the director of Katie’s tests, diagnoses and treatments after coming to the US, with posters for the orphanage walls demonstrating the correct protocol for handling a child with very fragile bones.
We move with Tommy to his next daily event–a physical therapy session. We are made to understand that sometimes his therapy comes before lunch, sometimes afterward. Today we try to put his very young therapist at ease and don’t take any photos or videos. My traveling companion, a physical therapist with thirty years’ experience working with children with special needs as well as having her own young adult son with Down syndrome, quickly notices that they are using very outdated treatment strategies. It’s not going to do him harm as long as the fragile bone precautions are taken, but it isn’t going to help him progress as he has the potential to do.
We finish out the morning by being taken to the room where Tommy will be fed his lunch. I am asked whether I would like to feed him myself, but I ask to be allowed to observe the caregiver feeding him this first time. I observe, and ask questions. This process gives me an enormous amount of valuable information.
A little snippet of the video footage that my friend captures~
I come to understand Tommy’s biggest feeding challenge, how he is being fed, how he is responding to both the food and the feeding method, how he will progress once he is being fed correctly, what he is eating, and what food and feeding supplies to pack for his trip home. In addition, I understand why we can expect him to grow after bringing him home and altering his diet–his current diet is real food, but consists mostly of carbs rather than protein, and everything is cooked rather than fresh. No wonder the little ones with extra chromosomes I see this week are looking a bit on the chunky side.
We watch Tommy’s caregiver put him down for an afternoon nap, say goodbye, and head out by taxi to our favored eating spot. The food is inexpensive, freshly made and perfectly seasoned. I’ve never eaten a salad in the US that compares to those served to me in Tommy’s country.
This break gives us a little time to re-group, compare notes, bounce thoughts off one another.
We arrive back at the orphanage and meet Tommy in the visiting room, fresh from his nap and snack.
Ah! The Bag! What new and delightful treasures await me in there today?
I’ve already gotten the message through to this otherwise nice lady named “Mama” that I am not interested in tasting her treats.
But I’m sure there’s something else in The Bag I’ll like better.
I impress everyone by paying a little attention to a book.
Mama helps me know where to look by having me feel and pat the pages…
…and by using a few words, like “Orange, orange,” and “Turn the page…”
…but mostly by moving at lightning speed through the book before my attention span comes to an end.
I need to rest on my back every so often. Here I am resting before Mama and her therapist friend assess me.
They take their time assessing me, moving slowly and cautiously and giving me plenty of breaks.
Maggie takes lots and lots of video footage to help them remember the tremendous amount they learn about me during this visit.
Resting on Mama’s knee~
I learn some things today, too. Now I know that trucks are fun for more than just shaking. It feels really good under my hand to zoom a truck back and forth on the floor. This one is a cement mixer, and I begin to learn how to use my hand to make the back spin around. “One hand holding; one hand doing,” I hear Mama say, as she helps me, hand over hand.
Tommy has been working hard and needs to rest. We decide to take this opportunity to snap some photos demonstrating the proper and improper ways to handle a child with fragile bones.
Besides normal common sense measures that are taken for every child, like avoiding a blow to the side of a long bone or the head and avoiding falls…
When changing the diaper or clothing of a child with fragile bones, never pull the body upward by grasping the ankles.
Instead, gently lift the child’s body from beneath to remove the clothing…
…and to pull the child’s clothing back up.
Never pull up a child with fragile bones by grasping the arms.
And never lift a child with fragile bones by grasping the rib cage. This can contribute to spinal compression fractures like the ones Katie suffered.
Instead, lift the child by supporting gently from underneath…
…one hand and arm supporting the child’s upper body from one side, and your other hand and arm supporting the child’s lower body from the other side…
My friend safely transfers Tommy to his wheelchair. [Among many other useful things, I learn a wheelchair rule this week. Brakes are the first thing on and the last thing off.]
We explain over and over again throughout the week, “Always lift the child from beneath. Let your strong arms be what bears the weight of the child, and not his own fragile bones. It’s not hard to do, it’s just a new habit to learn. We had to learn it, too, and have handled Katie in this way for so long it has become second nature to us. Always lift from beneath.”
Mellowing with Mama before supper, bath and bed.
Tommy is a pure joy.
No other words necessary.