shared by Cara Murray
By a little boy named Andrew. He is wonderful and I love him. A lot.
I clearly remember the first time I read about Andrew. Cindy had sent out a blog entry on him. I don’t remember the details other than I felt her love and desire to see this child flourish as I read her post. Shortly after she sent the blog, I went to Uganda for a visit (little did I know that visit would result in a rather severe move and career change for me but I suppose that is for another blog entry).
I remember walking up to Andrew’s house. Nothing could prepare me for his condition. I was hesitant to greet him and I remember trying to act casual and easy as I walked up to him but inside I was terrified. He wasn’t a huge fan of me at first but seemed to be excited about the car we had driven, turns out ‘motorcar’ is similar enough to understand. Andrew was seated outside on a mat. He was half clothed and unable to move towards us. His head was very large, his legs were really little and he had limited use of his arms. I had never seen anything like it before. He spoke well and was clearly excited to see Seggy (again, not a fan of me – I tried not to take it personally). At the time we weren’t 100% sure of his condition but it was later confirmed that he suffers from Hydrocephalus.
My interaction at that time was limited but when I moved to Uganda in October 2009 I knew I needed to follow up on Andrew. Over the course of several months and many trips to different clinics, we discovered that Andrew was in fact healthy. There is no way to reverse the hydrocephalus this late in life or reduce the size of his head, but we were encouraged by the doctors to focus on improving his quality of life. On a trip to Mbale, several hours outside of Kampala, we visited a children’s hospital that concentrates on neurological issues, including hydrocephalus. One of the doctors showed us a CT scan of a ‘normal’ human brain and then the CT scan from Andrew. The comparison was unbelievable. The CT scan of a ‘normal’ healthy brain showed large amounts of gray or brain matter with little parts of black or water around the brain. Andrew’s CT scan showed almost all black, meaning his head was primarily full of water and only a small amount of gray along the outside. The doctor was so surprised to see how little brain matter Andrew had and how high functioning he was. It was at that moment we learned to appreciate how healthy and able Andrew was. Up until that point we had focused on all the things he was unable to do. Andrew is unable to walk, has limited use of his right hand and unable to move around independently but as the doctor pointed out, he is able to talk, he is able to joke around and laugh, he is able to count to 10 in English and able to feed himself. After that appointment the doctor sent us away with the advice that we focus on helping Andrew become as independent as possible and encouraged us to get him intense physical and occupational therapy. I left Mbale extremely grateful and in awe of God’s goodness. It was truly a moment of looking at the glass half-full instead of half-empty. Despite it being a long journey and somewhat hard on Andrew, he was a trooper and absolutely loved each minute of the car ride. As we pulled up to his house after a 6-hour car ride home he announced that he didn’t want to go home, he wanted to continue driving around. We all laughed. It was a great ending to the trip.
I will say however that during the trip I had times of great frustration with Andrew. He is 8 years old and has several mannerisms of a 4 year old. He whines when he wants something and cries when you make him do something he doesn’t want. And his mother allows it. There were several points when I wanted to intervene but something told me showing Mama Andrew how to parent would not be all that loving. I prayed for patience and a solution.
A few weeks after our return I was talking with Seggy and we remembered that another clinic for physically disabled children had a residential program. After a bit of discussion and a trip to Katelemwa, the clinic, we decided to have Andrew join the residential program with a caretaker for a month to see how he would do with daily therapy and a bit of time away from home. When Andrew is at home he spends all day sitting on a mat outside. His mother has 3 other children and given Andrew’s size, taking him to church and other places is extremely difficult. Not only was the therapy a big part of the reason to take him, I knew time in another environment with other children and loving caretakers would be so good for his development. Secretly I also hoped he would learn to stop whining and crying so much, but that was the not-so-patient Cara thinking.
Andrew has now been at Katelemwa for one month and I am happy to report he is thriving. The first week was extremely difficult, both physically and emotionally for him but he is doing so well now. The second week he was there I went to visit and it was at that point that something changed. I have always loved his child, but during that visit Andrew and I connected in a really special way. I can only say that God was at work b/c it was not by Andrew’s or my doing. He spent much of the first week whining and crying but after a few discussions, he has made great strides. He is now laughing with all the nurses and staff and has even told them to ‘watch out during therapy because he can kick.’ I’m not saying that threatening to do physical harm is funny but in this situation it is funny b/c not only can Andrew not kick (his legs are still too weak), he is showing love for his helpers.
Earlier this week I went to visit Andrew and as I walked in he shouted “Muzungu!” (word for white person in Luganda). I responded with “Ani?” (who?) and he screamed “Auntie Caro!” I brought him some new toys and he repeatedly thanked me in English. We spent time doing exercises and laughed and clapped, which is great fun since he is gaining use of his right hand. He rubs my arm when I come, he touches my hair and we spend time laughing. He spends most of the time talking to me in Luganda and while I don’t understand anything he says, he doesn’t seem to mind and the other kids in the room laugh. Within the first few minutes of seeing him he’ll ask for money, tell me wants to eat rice and asks if we are leaving b/c he wants to go in the car, and something that used to bother me now makes me smile with joy.
While he isn’t able to walk yet or move around independently, he is getting there and most importantly he seems really happy. I’m not sure how much longer he will stay as the caretaker has literally put her life on hold, but I pray we can keep him there for at least another month. I ask that you pray for this situation as well. If we do have to take him back home we’ll find a solution and I imagine I’ll be taking him a few days a week to a local clinic for therapy but it would be my desire to see him stay at Katelemwa for a bit longer.
The pictures below show Andrew trying to get dressed, moving himself in his wheelchair and clapping. Enjoy!