Sefora is a twin and there were complications during her birth. Her sister was delivered naturally but Sefora had to be delivered by caesarean. It was eight days before she cried, her mama told me. Her mama attributes her not being able to walk due to a spinal injection that was given when she was one (further clarification established this was a lumbar puncture). Her condition appears to be more like Cerebral Palsy evident by symptoms such as severe lower limb paresis. Developmental delay is hard to determine when you don't speak the same language but there was a slight but obvious difference between interacting with Sefora and her siblings.
I first met Sefora and her mum while working in the screening tent. One of the screening leaders had told me there was nothing we could do to help. I called Sefora and her mama through in to the privacy of the tent. I watched as mama bent down and Sefora wrapped her arms tightly around her mama's neck; this routine was obviously familiar. Mama's strength was evident but so was the toll of this load on her body. Mama is only getting older and Sefora is only getting bigger.
I listened as mama explained through the translator that her daughter had never been able to walk. Wishing I had better news, I explained how sorry I was that this was not something Mercy Ships could fix. She started to sob, heaving with shear disappointment. I'm exhausted she cried. I'm tired of doing this. I carry her every day to school. I thought you would be able to help. She sobbed loudly, her body heaving.
Tears welled up and I looked over at the chaplain who turned away as tears ran down her face. Tell mama she is doing such a good job, I said to the translator. Tell her we can see how hard she works to provide the best possible care for her daughter. Tell mama it's fantastic that she takes her daughter to school every day. Tell her we admire her for not giving up despite how tired and exhausted she must be. I meant every word but I was putting a bandaid on a gaping wound.
Why doesn't she have a wheelchair I asked? The reason was not clear, likely causes were the cost and the fact they had adapted so long without one. Do you have one? Mama asked me. When the need is overwhelming as is the need for health care in West Africa, there are many ways of responding. You can attempt to fix anything and everything you're presented with but that quickly spreads resources pretty thin. Or you can focus energy and resources into a particular area and do it well. Mercy Ships has primarily chosen surgery as well as education to local health care providers. I'm sorry we don't, I answered mama, Mercy Ships does not have wheelchairs to give away.
I remembered a generous amount of money given to me before I left. I had told both Bea and Gran I would look for a specific opportunity to use it. I watched as the landrover pulled away to take Sefora and her mama home. Words were not enough, they needed a wheelchair. I text home and told the story of Sefora to Mum, Dad and Kate. Please hold me to it, I asked. I don't want to wake up tomorrow having lost the passion to help them or heaven forbid, forgotten about them.
The first attempt to locate a wheelchair turned into a scavenger hunt accross Pointe Noire with my lovely roomate Becky. I'm going into town to buy a wheelchair, want to come? I asked her. I would have given her a more honest description had I known it would not be so simple. The hunt involved five taxi rides across town one of which Becky may have squealed You're going to get us killed as we ran away from a taxi driver yelling unreasonable demands for more money. She would have dressed up, she told me, had she known she was going to have a meeting with the head of a medical insurance company. We explained what we were looking for to the large french man who promptly led us down through a key-pad locked door into a dingy basement. It was the closest we'd got to a wheelchair all day but the three on offer were old and rusty. He was asking too much for the crappy condition they were in so we got out of there fast, called it a day and headed back to the ship.
The hunt for the elusive wheelchair continued another day. This time with the help of a knowledgeable day crew member Lionel. Day crew are local congolese people that are hired to work primarily as translators but also assist with vital duties in the hospital and throughout the ship. They are a valuable link between us and the patients. Lionel and I arrived at Sefora's house that morning. A dirty, dusty street on the outskirts of Pointe Noire led us to a modest cement house. The family welcomed us and I told Sefora I wanted to help in some way. I assessed her function; her legs had little muscle tone but she could move her left foot the slightest amount. Her arms and hands were extremely strong and she demonstrated why as she dragged herself along the dirty, hard cement floor. I asked if a hand controlled tricycle-style wheelchair would be helpful but mama explained that a fold-up standard wheelchair would be more suitable. They don't own a car but do have a monthly contract with a taxi driver so it would be good to have a wheelchair that could collapse and fit in the taxi. This way Sefora would be able to join her family when they go out and not be left at home because mama is too tired to carry her. While I'd orginally thought a tricycle-style wheelchair would allow Sefora independence and freedom, more important is belonging and being part of a supportive, loving family.
Lionel knew of a medical supply company in Pointe Noire. They had a wheelchair and after an hour of haggling we agreed on a price. As we were beginning the transaction I casually enquired that this included some sort of guarantee should the wheelchair break sooner than one would expect. Oh no no they answered no guarantee. I wasn't going to settle without one. Another long discussion followed explaining that I am a volunteer who doesn't earn any money but instead pays to work. They printed and signed the guarantee. Lionel and I then took the wheelchair for it's first (of hopefully many) taxi-rides to Sefora's house.
We were greeted by smiling, excited children as we wheeled in the brand new Sefora-mobile. Mama was exclaiming oh merci merci merci. I picked Sefora up off the ground and placed her in her new wheelchair. I struggled to do this and appreciated mama's strength even more. She quickly felt for the handles on the wheels and competently began navigating the porch. I wheeled her through her house, to the kitchen and the living area. I taught her how to wheel close to a chair, put the brakes on and transfer over with her strong hands. She completed this with surprising ease. I wheeled her outside which was harder than I was expecting in the areas of soft sand. A wheelchair is not the ideal fix for Sefora. Ideal would have been intense physical and occupational therapy starting T - 10 years. Ideal would have been high-quality obstetric health care that might have even helped prevent this situation altogether. But inablity to deliver the perfect solution is no excuse to not do what you can.
A wheelchair will not magically fix all of her problems. Her mama will still have to carry Sefora but hopefully less. And hopefully the time spent dragging herself around on the dirty, rough cement floor will also be less. Instead she will be able to wheel herself around her home and classrom.
But most importantly, I'm so glad she knows that the suffering on this earth is only temporary. She was made for a kingdom where she will run, bounding into the arms of Jesus.
Bea and Gran, I relay this message from Sefora:
Merci Beaucoup. Thank you so very much.