My Heart Has Been Captured

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 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 bit 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 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 exercised 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 use to bother me now makes me smile with joy.

While he isn’t able to walk yet or move around independently, he is getting here 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!

Leopard PJs

Here are the promised pictures of Gift in her fabulous leopard pajamas. These pictures were taken Friday morning and as you can see, she is sporting amazing bed-head :)

Love you all,

Cara

Gift is Back!

It's true! Yesterday I ran home to go to the bathroom and do some dishes. I left the door to my room open and as I am in the bathroom I hear a knock on the door (to the bathroom). I think to myself, "You've got to be kidding. Which of the 10 crazy neighborhood kids have walked into my house and are trying to get into the bathroom?"

Oh no, as I open the door I see Gift and her brother Roger. Honestly, I was so shocked and excited. It felt so great to hug them both. So the short story is that the aunt they were staying with came to the school for their tuition. However, when you enroll kids in a new school there is an upfront registration fee that can be pretty expensive. Also, since we only have a few months left in this school year (school operates on a calendar year here), we decided to have them stay here for the rest of the year and over the next school break, we'll figure out a long term solution for them.

At first Pastor suggested Roger stay here as a boarding student and Gift return with the aunt to Kampala and attend a local school, but first of all, I think they need to be together at the same school and second, I was not ready to say goodbye again. So, they are both here and I couldn't be more excited. They are both staying with me for the moment although Roger may shift to the boarding section.

They weren't here for more than an hour when Gift told me she was going to do the dishes and clean the bathroom that night. I told her no, she needed to get ready for school and she told me, "We are here to work...and go to school." I told her that was not the case and school was first priority and we'd clean later. So, I need to go pick up a few of her favorite cleaning supplies (toilet bowl cleaner - I know, it's so weird) and a stock the house full of cookies for my kids.

I'll keep you all posted but had to let you know of the great news. Oh, one more thing: Gift was given this one piece leopard print thing that is long sleeved and goes past her knees. I think it was a dance outfit in a previous lifetime but now it is Gift's pajamas. I'm serious - I'll post a picture soon. She sleeps in a spectacular one piece leopard print outfit every night and among many other things, it makes me laugh. Love her!

Quick Update

Warning - this update is poorly written and may not even be worth sharing. I am a bit tired and the last several weeks have been difficult. However, I beat malaria and that feels good :)

I have been meaning to write an update for several weeks now (I think I start too many of my updates with that) and am sorry for the delay.

As you can see from the previous two entries, I have been blessed by the work we are doing in Katakwi and had an absolutely wonderful time on our last trip. However, many other things have been going on here in Nkumba since mid-July. I won’t go into too many details but will give you an overview of what life has been like these past 5/6 weeks.

The end of July was a fun and crazy time. The kids went on holiday from school and with that 2 of my favorite girls (yes, I have favorites) moved in with me. Sarah and Gift have been close to my heart since I first visited Nkumba last June and since the woman they had been staying with had gone back to school full time, I decided to have them move in with me. And with that life changed dramatically. My current apartment (if you can call it that) is one room with a bathroom. It is probably the size of small to mid-size bedroom in America so you can imagine how things changed when 2 girls moved in. I bought an extra mattress, the girls moved in with all their clothes and stuff and we had a party. Honestly, it was quite the experience. I think the girls were used to getting up around 5:30 am and for those of you who know me, that is about one hour before I am capable of opening my eyes. So each morning, Sarah would jump out of bed and start washing something. I would literally have to ask her to stop washing the floor or the dishes and tell her to get back into bed. Gift took pride in cleaning the bathroom and thought it was pure joy to clean the toilet everyday and I’m not exaggerating. Since I didn’t have the heart to tell her the toilet didn’t need to be cleaned everyday, we went through at least 2 containers of toilet bowl cleaner a week. I really never thought I would have to ask a child to stop cleaning so much but with Gift and Sarah it was a daily occurrence. At one point Gift was upset with Sarah because Sarah washed the clothes 2 days in a row and she wanted to do it by herself. I promise you I was not telling these girls to wash their clothes everyday and do so much cleaning, but I think they were having fun. Also, with Gift and Sarah came other girls as well. Since it was the holidays, a few of their friends would usually show up around 7:30 am ready to play. I was lucky if I was out of my pjs at that time but given my lovely Ugandan daughters had been up since 6 am, they were ready to go. For several weeks my house was filled with children. The came in, they played, they ate, cleaned, colored and left until the following day when we did it all over again. The few weeks they stayed with me were filled with a lot of laughing and joy. I wish I had written down other stories b/c there were so many funny things that happened while they were with me.

However, soon after the girls moved in we discovered that the place they had been staying was not a safe environment for kids. The 2 girls and 4 other children had been staying with a woman near the school and through a number of conversations we found out that the kids were not being given the best care. I absolutely loved having the girls stay at my place but I am not their mom and living with me was not a permanent situation. Once we the reality of the situation, we decided to remove all the children from the house and reunite them with their parents. Sarah went with her dad for the remainder of the holiday and will probably attend a different school soon. Gift and her brother, Roger, went with a friend of their mother’s for the holiday and will begin a new school this week. This was all played out over the course of 3-4 weeks and as you can imagine, left me extremely sad. I know it was the right decision to reunite the kids with their parents but I did not want them to leave and am still sad about it now.

I think that is the biggest update I have to share now. But I will add that when I first decided to move here and work in Nkumba I remember thinking the work I was set up to do would most likely change once I got here. There is very little one can do to prepare to live and work in Africa. You can come with one idea and very quickly be doing something completely different. And this has remained true. I came 10 months ago with a certain idea of what I would do but I can honestly say that everything is changing. I am not sure what the future holds but I am certain of God’s word and that is why I came in the first place. God clearly tells us to serve and love others. Jesus commanded us to love our neighbor and to care for the orphans, widows and the poor so that is what I will do. I am not sure in what capacity this will happen but I know I need to stay focused on what God calls us all to do.

I am taking the month of September to pray about what God has next for me and will keep you all updated.