Just over a week ago, as we sat in our living room studying the Bible for church, we got a message that a child had been brought to our door. This is a fairly normal event, but this was no ordinary child. We were told he was albino. I had never seen an albino baby before. I knew though that he would have challenges, and I wondered how we could help meet them.
I was so grateful that we had a doctor, from England, visiting us for a week. Once church was over we all trooped down to the front door to meet Benard, a sweet one year old boy.
He was sitting on the lap of a young lady who was apparently his aunt. His father and a couple other relatives were seated on our reception bench as well.
The first thing I noticed was that Benard was a really happy, and apparently healthy child. The second thing I noticed, was that he didn't make any eye contact with me. He didn't react at all when I took him into my arms. He didn't seem bothered at all to have a strange 'muzungu'* lady holding him. *muzungu = white person
His happy expressions never changed no matter what I said or did. I began to wonder if he could see or hear me. Additionally, his neck muscles were very underdeveloped, and when I sat him up he couldn't sit upright--looking more like a five month old than a 12 month old.
I handed Benard off to Dr. Alisdair and then returned to speak with his family. His mother had died 'of a headache' (perhaps malaria?) a month before which explained why he wasn't really sickly. At just over one year old, he was old enough to eat solids, which gave me hope for his survival.
Based on what I'd observed so far, I asked Benard's family if they thought he could see and hear. They assured me he could, but I didn't put much stock in that because I felt they might just say what they thought I wanted to hear--thinking erroneously that I would reject a disabled child.
Leaving Tom to speak more with the family, I walked over to Dr. Alisdair and chatted with him. He was pleased to report that Benard's lungs and heart sounded good. This can be a problem with albino children, so that was good news.
He then noted that Benard did not seem to be able to see or hear. He didn't react at all to motion near his eyes (though he blinked a bit at a camera's flash) and didn't respond at all to loud claps.
While not surprising, this was definitely an important revelation.
Because Benard was, and is, facing such big challenges Tom and I decided to help Benard while still leaving him with his family. Their main concern was to be able to get him some sunscreen to protect his skin. We agreed to provide sunscreen if they would bring him every Monday so we can keep an eye on his health and help with some physical therapy. If the father was willing to do some piece work, we could help with clothing and/or food.
Aside from the huge responsibility we'd be taking on with a seriously disabled child, I also didn't want to move a child from an environment where he was obviously getting the care he needed when it would be so hard for him to understand. Everything would be different.
The next day was the first Monday when we'd be helping Benard's family to learn how to do exercises to help him develop more. We also wanted to teach them how to give him textures to feel and hold since he couldn't see.
Kathrin hadn't been around on Sunday when we all first met Benard, so I had briefed her on his condition and asked if she'd be willing to take care of his exercises each week and help to teach the family some skills. She agreed with enthusiasm.
Monday morning, right at nine o'clock, Benard and his family arrived. Kathrin escorted them to the playroom and I joined them after a few minutes.
Kathrin greeted me with these words: "I think he can hear!" She had noticed him flinch when our time clock in the reception clicked over to a new time.
He seemed much more grumpy this morning.
Kathrin handed him a toy and he reached right for it. He reached for it! What? He could see?? Sure enough, Kathrin took a colorful toy and Benard followed it with his eyes.
We showed his father how to make a toy with a bottle and some stones and when he enthusiastically shook it near Benard's head, the poor baby jumped in fright. He could definitely hear!
If it weren't for the fact that it would be nearly impossible to do, we thought for sure Sunday's child had been swapped with another. His neck muscles were stronger, he sat perfectly and even got up on hands and knees for a bit. What??
I'm not a child development expert, but I'm wondering if there is some type of brain damage involved. His neck movements on Sunday reminded me of children with Cerebral Palsy. His personality was so different, I wondered if that was somehow connected.
I look forward to continuing to work with Benard and to see how things go. Maybe we'll be able to help him from here, or perhaps God has a different plan. There might be a forever family out there that will be able to help with whatever challenges Benard is going to face along the way.
How you can help: Pray for God's perfect plan for this little life. Pray we have wisdom as we help him. Benard needs strong sunscreen to protect him from the sun's rays since he has no melanin. It would be a nice thing to throw in a care package. Kathrin has arranged to get him some child-friendly sunglasses.
We'd like to help this family with some clothes (we gave them two hats to protect his head) and maybe basic food supplies should the father be willing to do his part. Perhaps you'd be wiling to help with this need? Pray that Benard's family will value him and do all that is needed to provide him with the fullest life possible.