gonna make this garden grow”
Out of nowhere I found myself humming this song to myself recently, listening to the rain fall on Cape Town.
(This is particularly random, because the song that’s currently stuck in my head is “Somebody That I Used to Know”: I dare you to get that one out of your head)
As I wondered where that particular song had come from, I realized that it’s a fitting metaphor for where I am in the work with Sibongile. (Thanks, subconscious!)
I haven’t written here in a while, in part because I tend to shy away from sharing the obvious, the day-to-day, the mundane. I don’t post to Facebook what I ate for breakfast, that I’m sweeping the floors (which seems to be an almost constant effort here), that it’s beautiful here in Cape Town. I usually post when it’s out of the ordinary. Otherwise it’s just lost in the noise.
Which is why this metaphor is so apt. Somewhere along the way, the work at Sibongile has turned from making the exciting changes that come when bigger things happen, to the day-to-day work where the slower, more lasting changes come. Continuing the garden metaphor: my time at Sibongile began at harvest time, when you get to pick the fruits and veggies, and small amounts of effort get you big rewards. Now it’s the middle of the summer: I’ve planted everything I will be able to plant, I’ve even gotten to have the excitement of watching the new plants sprout, seemingly from nothing. I’ve had rainstorms wash away some seedlings. Now there are (I hope!) some well-established plants, and they need tending, simple weeding and watering. Nothing I do will make them grow significantly faster, there will be no ripe fruit to pluck and enjoy, at least not for a while. It’s entirely likely that I will not be here in South Africa when most of these plants mature and someone gets to eat the corn on the cob.
At the beginning of my time here at Sibongile, I could just reach up and pick the fruit: in one week, I labeled every custom-fit stroller and attachable table with the name of the child to whom it belongs. Suddenly, it was easy for the care workers to put each child in their own stroller, not whichever one seemed to fit, and they began doing so. (mmmm, those strawberries were delicious!)
Now, the growth is steady, but slow, and needs constant reinforcement. For example, every child has two or three custom-designed positions to keep them properly aligned.
(Yes, three for the whole day. How many times did you adjust your sitting position while you read the beginning of this post? Don’t know? Fine, pay attention for the rest of the post.) Imagine you have cerebral palsy, and can’t adjust your position. And a well-meaning someone just put you on a mat in a position in which your spine is twisted. You can’t move. You stay there until you are moved by someone else. That’s uncomfortable, right? Now imagine you are in that same position, day in and day out, because that’s where your body tends to lie. Your spine gets gradually tighter and tighter in that twisted position, until you can’t untwist, and you have scoliosis, which decreases your lung capacity, and it’s easier to get pneumonia. And it’s really hard to cough, to clear that pneumonia. This specific sequence is just one of the ways that people with CP can decline significantly through poor positioning.
Senecio, a group of Occupational Therapists who work here in Cape Town, visited Sibongile for three weeks to design appropriate positions, fabricate and buy the equipment for those positions, and train the carers in how to put the children in the positions. These positions are very specific, and many are quite complicated. Many positions require sandbags, small tables, foam wedges, or other equipment to keep the child in alignment. So all the carers were trained in the positions for the children at the house they work. They have detailed photos of each position, to help with recall, but it’s a significant amount of work to position 12 children, three or more times per day. And these carers have a lot of other work to do: they are responsible for feeding and cleaning the children, cooking the food, cleaning the house, washing the clothes, etc.
So the long term work, the tending and weeding, is to help the carers use these positions day in and day out. To be there to answer questions, to encourage, to cajole, to remind, to make the positions part of the everyday routine, instead of that thing that Johan makes us do. To talk with the carers, to help them notice how much more alert that particular child is since we’ve been doing the positions consistently, how much less that other child cries. The other day I told two carers the medical history of B.O., trying to help them understand her, why she’s so needy and has to get so much more calories than the other children. It took half an hour, didn’t get anyone positioned or fed or stretched… but as I told her story, how difficult it must be for her to be completely dependent, when she functioned normally as little as five years ago; the look in their eyes told me that the next time they had to deal with this challenging child, they might understand a little more.
One plant tended.
And there are the setbacks, the flash floods that wash away some of the growing plants: a little while ago we had the grand opening party for the newly renovated Sibongile Daycare/Office building. It was wonderful, with every child, every carer, and probably 100 community members there celebrating Sibongile. Everyone had their new Sibongile shirt on, and the place looked great. The buggies (individually custom-fit supportive strollers, a critical part of the positioning program) looked great… a little too great. With the best intentions, the carers had taken all the cushions off the buggies, removed the covers, and cleaned them. So now all the cushions (5-10 per buggy) are jumbled, some on the wrong buggy, some in the wrong cover, some without covers. So we shore up the soil, replant what we can, keep tending. We try to match up as many of the cushions as we can, refit to the best of our abilities, generally do temporary fixes until the seating experts can do their work: thank goodness they’re coming soon! And I’m working on some protection for the plants: after the upcoming fitting, we will write the name of the child on every piece of every buggy, so we can match up the pieces, when this happens again, as we know it will.
And there are the promising, hopeful things, the hint of fall in the air for a moment in July that reminds you that the harvest will come, the hope that your work will bear fruit. The little things, like the other day when I was positioning one of the children, and the carer next to me tossed me a piece of positioning equipment, unasked, as she positioned another child. In that moment I knew that she knows both children’s positions well enough that she anticipated I was about to need those arm gaiters. Another thing, not so small: we got word that there will be a new long-term volunteer PT to continue the work, that she can overlap with me, so there will be continuity. Becky Molinini, PT will be volunteering at Sibongile for one year, starting three weeks before I leave for the States! She is the newest Tremendous Hearts volunteer, and I can’t wait for her to get here.
Sadly, as I will return to the US at the end of June, it’s unlikely that I will see much of the harvest from all that I’ve planted. But I will continue to be involved in Sibongile, consulting in some way, even if it is from afar.
So I’ll get to see the harvest on Skype.