Malineo, the physio assistant who I have trained, is outside the physio house when we arrive and grabs me excitedly to show me all the progress that has been made since I was here in November. At that time the physiotherapy dormitory block was still not complete, and I wasn’t sure how the ramp connecting to the physio room was going to work, or if there would be enough space once they’d put the beds in.
It’s all working a lot better than I hoped and was worth the huge headache the ramp gave me on my last visit (see blog 32). The ramp is acting as an extra piece of physio equipment. The hand rails, running down the side of the ramp, which I recycled from an old abandoned bed frame, can be used by the children who need balance support. Holding on they can get up and down the ramp and along the bottom of the beds. It’s great physio for them. The children that can crawl can access the two rooms independently and sometimes use the ramp as an extra piece of furniture to sit on.
Mab has fixed the ceiling, the leak in the roof and the outside cladding, which all suffered in the great storm (see blog 32) and the room is now warm, cosy and easy to heat, a blessing with winter coming on. It would be great if one day the physio room could also have a ceiling and electrics to make it more user friendly during the cold months. Meanwhile the space it offers and all the equipment it now houses make it a great asset for the children with disabilities at Phelisanong.
The evidence of these benefits is the astonishing progress some of the children have made. Josh is now walking. I always knew he would but it’s heart-warming to see him standing at the door entrance with a shy smile on his face. Tula is also taking her first tentative steps while Mothimokholo can stagger right across the room with his wide ataxic gait.
As its Easter relatives are visiting for the day. While the children are occupied, Malineo and I unpack all the equipment and sort the physio room out. I have over 100 pairs of special orthopaedic boots, most of them brand new, casts off from the NHS, unable to use them again once they have been ordered and rejected by patients for whatever reason. I also have some more frames and special seating and a heap of Lego and Duplo and various other toys to stimulate the children’s minds and hand skills. This is the second load of equipment that Action Ireland have brought out to Lesotho for me. Collecting it and organising its transport to Ireland has proved highly stressful. It’s a relief to see it arrive at its destination, unpack it and finally use it.
The next day besides catching up with the children I already know, I start assessing some of the new ones. I see a couple of boys with hemiplegia’s and one with spina bifida and club feet. This is the third child I’ve seen here who has an operation for club feet but no follow up treatment.
Without special boots and bracing bars the feet just revert to their old position, meaning the operation is a complete waste of time.
I give him some new supportive shoes from my stock, put them on the wrong feet and tell him and the house mothers he must wear them every day like that to try and correct the position of his feet. He is only 6 years old and is the sweetest of children, smart, with a huge smile and desperate to do all he can to overcome his disabilities. At the end of the day I find him in bed and he quickly removes his blanket to show me he if still wearing his shoes on the wrong feet. What a star !
Less up lifting is the little 2-year-old girl, Bokang, I see in another house. She is an orphan and severely disabled, both physically and intellectually. Her whole body is rigid with the high tone of her muscles, her head and fascial features dysmorphic and her eyes don’t focus on anything or turn towards the brightly coloured toy I am holding. I fear she may be also be fitting as occasionally she jerks, and her eyes roll. The house mothers say she doesn’t have swallowing difficulties and are feeding her with a small spoon. Since she can only weigh a few kilo’s I don’t know how much nutrition she is getting.
She is not taking any medication and there is no medical monitoring of the children here, except those which have HIV who go regularly to a clinic, or those who develop emergency symptoms and get taken to hospital. I feel overwhelmed with where to start and what realistically I can offer her to improve her life. I decide to see what tomorrow brings and think on it for now.
Going back to my hut on the hill I feel a bit down, the weather and my living conditions don’t help. It’s now heading into winter, it’s cold, with lots of thunderstorms and thick red mud everywhere. Ironically, despite the amount of rain, the outside tap doesn’t work. The roof and the door to the long drop toilet have blown off, my hut roof leaks and there is no light. There is occasionally electric, when it’s not knocked out by the thunderstorms but there is only one plug and I simply haven’t had the time to go to town and find an adapter to try make life a little easier.
The other three huts around me are full of orphans and the rubbish they have dropped litters the ground everywhere, trodden into the mud. A little Albino girl, holding a baby on her hip not much younger than herself, tells me there are nine children in her hut, a hut which is smaller than the one I’m living in and has no electricity at all. I feel guilty about my extravagant living style when they have so little and will live in these conditions all their young lives.
Later a gang of half a dozen cheeky boys come calling at my door to parade in a couple of Basotho blankets and see if I have some tools to dismember a bike they have been given. They stand there in the rain bantering with me and not feeling at all sorry for themselves, so why should I ?
It’s food time and they run off down to the centre with their plastic bowls to get some pap. They have the security of regular meals, shelter, friends and a bike to share between them, life doesn’t get much better. These kids and their great ability to squeeze whatever joy can be found out of each day give me a reality check. I smile, wash the mud off my hands and find the electricity is on and I can make a cup of tea. I count my blessings, life is good, it just depends on your outlook.
The next day the rain is unrelenting and there is a large pool of water which I need to negotiate outside my door. There are torrents of water pouring off the hills, which at least mean I have easy access to washing water. Down at the centre there is no sign of Malineo, and I decide to put together the two Panda seats I have brought. These provide special seating for children who need postural support, one was given to me, obsolete from stores, and one I brought off eBay. They are very expensive to buy new with all the attachments.
It takes well over an hour to work it out how to put them together and once they are fixed, I go to the house next door to find Kananelo to test drive one. He has no control over any of his limbs and they all wave around excitedly as he recognises me. I pick him up with some difficulty and place him in the smaller seat which has a chest harness and head rest which hold him firmly in position, the best thing for children with his condition.
It’s the first time I’ve seen him able to sit still, and he appears to like the sensation. Later when food comes the house mother takes him out of the seat and attempts to feed him on the floor. He gets very distressed. Once back in his seat he calms down and feeds well. If only for his sake it was worth getting the Panda seats out here.
I attempt to feed the baby Bokang a bowl of milk and lumpy pap one of the house mothers gives me. Bokang makes heavy weather of it, no wonder she’s so small. I have a blender to try and make the food smoother, but there is no electricity. The house mother resorts to the dreaded Weetabix, which I was so familiar with in 2016. I wonder how Bonkang has made it this far.
In the afternoon the weather continues to be shocking, but I have two special treats for the children. I play them a film off my laptop and give them all a chocolate lollipop to suck on while they try to follow the Disney classic, Finding Nemo. Bokang and Mothimokholo both lovingly cuddle up to me and dribble all down my trousers. It doesn’t matter because I haven’t been able to wash my clothes since I got here, and the stains blend into each other.
Whether a fish with a disability rings any bells for them I don’t know but the kids seem to enjoy the film and the lollipops go down a storm. After the film is over, I give Tokiso my old laptop, which he is completely thrilled with. He is the only one with the manual and intellectual skills able to make use of it, but the others sit around him absorbed with what he is doing.
There’s no internet but I have downloaded some games from him to play on it which hopefully will entertain him for a while. Sure enough the next morning he is still playing on it. I do physio with the younger kids in the morning and the older ones in the afternoon. The older ones are the crew that I’ve been working with since I first came here in 2016, how times have changed since then.
I play various games with them to get them to stretch and strengthen without it being a chore. There is plenty of room for them to roll up and down on the crash mats and be chased around on the floor by me in a game of tag. After that everyone gets a walking frame and we set off to make a complete circumnavigation of the centre on the wonderful flat path.
They are all using posterior frames of the same spec that kids would use in the UK. We pass the old physio room, which was just a corner of a hut and was also used as the clinic. It had no facilities except some adult plastic chairs. We breeze past the school, remembering Tokiso’s first epic journey to walk there in 2017, taking him more than 20 minutes to negotiate a few hundred meters on the rough stony path. Finally we arrived back at our lovely on suite physio room, which I never would have envisaged back in 2016.
It’s time to go home and I walk back up the track to my hut. It’s finally stopped raining and I risk doing some washing in the torrent that is gushing down the hill. The outside tap has miraculously come on and I have drinking water. The electricity is also on and I have an extension cable so I can charge my laptop and heat up some beans at the same time. I also now have some candles which brighten up my dark hut as I write this blog.
Outside the orphaned kids are running around screaming and chasing each other. The boys are half wild while the young girls are already responsible adults, collecting water and nurturing the toddlers. Tomorrow school opens again after the Easter break and they will become school kids again. I guess in the UK we would call them young carers, here with so many thousands of orphans, it’s just what happens. Later I hear a group of the girls singing completely unconsciously with beautiful harmonies. It’s been another day well spent and my blessings are many.
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