And today my heart is hurting again. An early morning call from a manager asking me to come to the office. I could tell something was wrong and leapt out of bed, pulling on my clothes. Running down the corridor with mamas in tears all along it, asking 3, 4, 5 times “what happened?” “who is it? ” with mamas too distraught to answer me. I looked at the Tumbleform chairs and said “Yusuphu?” and they nodded and pointed to the office. Yusuphu lay there, washed and laid out in the back office, cold and rigid under a white sheet. Just shy of four years old, a smiley great big character of a boy with cerebral palsy and a few other issues, was even more beautiful in death and his arms and legs, usually bent by constant muscle spasms, were finally straight. I sat on the floor with him, just sobbing, for the short life extinguished in a few minutes by a massive seizure.
A short life but, aside from the fevers and painful spasms that punctuated it, a life in which he looked for joy and loved every opportunity he had to share time and happiness with people.
Its a bit of a cliche to do the ‘what did I learn from him?’ but seriously he was a great teacher without realising it .
I have slowed down a lot but sometimes I still get very impatient in Tanzania with the time it takes for things to happen. Yusuphu, along with the other more severely disabled children at the Baby Home, taught me more about patience than anything else. Sometimes it took 20 minutes to eat 2 cups of food. Sometimes it took 5 minutes to move 12 inches across a mat. Sometimes it took 4 minutes for him to co-ordinate all the muscles it took to raise his head up and keep it up long enough to look at everyone in the garden . Sometimes it took a whole minute to form a word and get it out. But when he got there, when he accomplished, the joy on his face was awesome.
What do you do when you get up in the morning? You open your eyes, stand up, walk to the bathroom. Imagine waking up and not being able to walk. Imagine trying to shower but not being able to turn on the water alone. Imagine going through life seeing everything differently, and nobody really understands you. We take things for granted all the time. We take being able to communicate feelings for granted. What if you could not tell your mum that you loved her? What if you couldn’t run and play with other children? Yusuphu was clever – a brain much less affected than the rest of the body he was trapped in, he loved to join in any games and was heartbroken when he was left out or was not able to do what they could. And it hurt my heart to watch his pain and frustration. Do not take things for granted because someone would love to be able to do things by themselves.
Yusuphu was mainly non-verbal. He was very good at expressing his choices through his eyes and expressions. You just had to slow down and watch carefully. In the last few months though, we were working with his language and he had just started springing whole words on us when we least expected it. “Yummy” was the last word I heard him say – about a cup of banana and peanut for snack. But actions still speak louder than words and teaching the other kids to do the high fives as well as saying hello and hugging him to show they were pleased to be with him was so worth it to see his face. And to watch him very slowly move his hand to hold on to Blessing, who has microcephaly and does not have as much control over herself, showed how much he used actions when he didn’t have the words himself.
And Yusuphu never gave up. He concentrated so hard to lift himself and to make movements. Almost crying with exhaustion but not giving up until he’d achieved it. And I cried with joy too when he finally managed to do it.
He changed my life without even realising he changed it.
So a few hours after he died, we walk, along with many mamas and guards who came in on their day off, in silence up the hill. This is the quietest this group of people ever are – on the walk to bury a child (see Feona’s Journey and For Others) . The sun blazing down on the parched cemetery up the hill, overlooking the lake, and all raising their voices in harmony to sing and to cry and to put the small coffin in the ground.
Finally free of pain. High five, PhuPhu!