I can hardly believe what she’s telling me. The kid’s seven – but he’d barely reach my knee.
It doesn’t help that his bones are bent at sickening angles, his right forearm twice broken and healed.
Jackson has the biggest brown eyes I’ve ever seen. They’re beautiful and he stares at me with them. There is no plea, no shame, no questioning. There’s nothing he wants from me. He just watches as I stroke his bent arm.
“All his joints have bent and he doesn’t grow.”
That much is obvious.
“He can’t walk, my oldest son carries him. He can crawl a bit. Now he has a lot of pain.”
His mother, a big strong-looking woman, speaks to me in soft Swahili. I wonder how she knows he has pain. What kind of pain. His face barely moves.
“His stomach grows but not the rest of him.”
It’s true, his stomach is a round little pot struggling to escape from his tiny rib cage. I could meet my hands around those ribs, but I’d be worried to crush them like chalk.
“I went to very many hospitals at Dodoma and the Government Hospital. They just gave me some medicine but he was not healed. I hope the doctors here can help.”
Jackson has renal-osteodystrophy. A big word that means ‘he’ll die’. His lungs are growing and his ribs are not. One day he’ll go to draw breath and they won’t inflate. There is no cure. Even the surgeons at CCBRT – one flown in from Belgium this morning – can’t find any treatment, much less heal him.
His mother waits for their verdict. She hasn’t yet been told how bad it is for her boy.
What’s worse, Jackson is neither her first nor her last.
“I had another child with the same problem who died. When I saw this second child I felt a lot of pain. After him, I decided not to have anymore children but, bad luck, I had another one.”
First her eldest died, then a healthy son, Joffry, then Jackson and then little Amani Nelson who’s 18 months. All but Joffry with artrogryposis, ‘glass bones’.
“When they are born they look all floppy. I see they are not able to do normal things and their teeth don’t grow. I have to crush food for Jackson so he can swallow. If they fall, their bones break. Even just slipping over. I get help from church people to care for them.”
She has tried so hard to save them. “I have spent all my time visiting places to try and understand his problem so he can be helped.”
Her search brought her from Orenga, 600km away, to CCBRT Hospital here in Dar es Salaam with three children – one dying. God knows how she’s done it.
The surgeons of CCBRT will finish meeting soon and nominate Meryl to break the news to the mother. We’re so sorry, Mamma. There’s nothing we can do. We have counselling and support workers to help you in these months. Sikitikia mamma.
If a mother’s love looks the same in any colour, her anguish sounds the same in any language.
“I have cried out to God so much and he hasn’t heard me.”
I can’t meet her eyes anymore. My God who I praise for giving me health and a car park.
Joffry minds his brothers while his mum goes off to get food for them at the canteen. Amani Nelson does a poo on the concrete and starts to cry. Joffry tries to hide it with a cloth and comforts his crying baby brother. He looks after where his mother went.
When he grows up, he says he wants to be a doctor. To fix his brothers and make their legs strong.
Jackson just sits and stares at me. I take his hand and put my pen in it and guide it across the paper. First we draw some eyes, then a nose and a smiling mouth. I hold our picture up against his brother so he can see it’s a face. But Joffry isn’t smiling so much.
His mother comes back and scoops up her messy baby, murmuring mothery things.
Joffry picks up Jackson and carries him on his back like a backpack. Something flits across Jackson’s face. Pain.
I want to tell the mother I will cry out to God for her children too. But I am afraid He won’t hear me.
She walks away with her boys. One strong son, one gone, one crying and one with big brown eyes and broken bones.