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Wednesday, September 30, 2009

Still A Long Way To Go

I don't know how I convinced myself that treatment for Jackie's chemo was going to be so simple. Maybe that was my way of keeping my head together. I had somehow understood that she was going to be getting one injection every week for six weeks with maybe some vomiting or other small side effects. WRONG!
First, the first two weeks were I think pretty close to the hardest weeks of my life. I had a screaming (nonstop) child on my hands, no sleep, a disgusting house, and several other children home for the holidays (all with their own issues going on).
After the first couple of weeks it did get easier. At least she wasn't so sick, only week the day of and day after the treatment. Until this past week. Another high temperature, stuffy nose, sore throat. But, at least no screaming.
Then today we went for the 6th treatment, the whole time me thinking it was to be the last. This little bit of celebration was short lived as the doctor told me. "No. This is just the beginning. You see. The tumor is still slightly visible under her foot."
So, we get next week off (that is, except our visit to the AIDS clinic). The week after we get to again experience the joy of sitting in the hospital 12 hours each day waiting in lines so that every part of her body can be tested for any trace of cancer. Then on Oct. 15, we get to see the SENIOR doctor to hear the verdict. I'm told most likely a few more months of chemo. They will combine two different types of chemo. This time around we shouldn't be having to go every week, HOPEFULLY. It should be something like every three weeks.
I did hear that sometimes this type of cancer that they will leave it to be treated with ARVs alone. I'm hoping that this will be a safe, effective alternative for Jackie's case.
And to top all this off, I had to take Jackie to the dentist this past week because of her having pain in her teeth. When I got her, I already knew she had a mouth full of cavities, but being that so much else has been wrong, I've been trying to tackle one thing at a time.
Now, she needs to have several teeth removed which at this point is a huge risk. The doctors are advising against it since both the HIV and the chemo weaken the immune system. They said there is too much risk of infection. The dentist has agreed but said there is still risk as the cavities have entered deep into the roots of her mouth, meaning there is still risk of her having an infection in her bloodstream due to bad teeth. He said if it gets too bad, he and the doctors will have to weigh which way leaves her at most risk of infection and the teeth may have to be removed anyway.
All of this on top of now having no electricity for four days, a leaking toilet (yes, water was finally restored to my apartment after months without), and running out of gas to cook with. Hopefully, I'll get gas to cook with soon (that is, if it's available at this time in the country) and eventually electricity will come back on!
At least there are some bright spots in all this. The new school building is almost ready! The wall is almost finished and we should have the kids in class there next week!
Mary, the quiet angel at home, has greatly improved in school. All of her scores have more than tripled. Her school sends home monthly reports. Her first month in school, her math score was a 5. This month it was 64! Yes, I know that in the U.S. that is a D. But, here the grading scale is completely different so a 64 is good! I know by the end of the year it will be somewhere in the 80s. Math seems to be her best subject and hopefully science will pick up as well. It will be awesome to see her excel in those areas. There are still few women in those fields here in Uganda so if she can keep it up, who knows where she will go!

Sunday, September 27, 2009

Wasted Potential

Every day I walk through a slum. I'm so used to the place that many times I don't notice the sights or smells that I'm passing by. What I notice are my friends, the children that run to greet me, the old ladies that give me advice, and the unlimited potential.
But, the last few days, walking through has become a bit depressing again. I think death does that to a person. The last few days I've noticed how much of this unlimited potential gets wasted. How many of those teen girls got pregnant out of desperation to be loved? How many mothers live dangerous lives just to feed their children? How many of the men wouldn't abandon their families if they had a steady job? How many of this next generation are going to grow up and continue the cycle of poverty?
The few children I've put in school seems to be of no significance. At least to me at times. I have to constantly remind myself of the story of the boy throwing the starfish back into the ocean. There were so many that it probably didn't make any difference but for each individual starfish it made a difference. That is true for my kids. When I look at the whole slum, what I'm doing is making no impact. But, on each individual life, there is a change.
For most, they will be the first in their family to finish even the simplest level of school: primary school! They now have the chance to dream of even getting into university (some with scholarships) and making it out of the slum, making a difference in their families.
I am proud of each one of my kids. While they may not always make the best choices, they are fighting hard to rise above every obstacle that has been set in their way.

Thursday, September 24, 2009

Death Still Sucks

The one thing about my "job" that I hate most and can't seem to get used to is death. I see a lot of it and each time it is hard to take. Sometimes it comes by surprise. Other times, we've had a bit of time to prepare for the inevitable.
Last night a call came to my phone in the evening as I was just finishing supper. It was one of my big kids- one that I felt like I had made some major headway with in the last few weeks. She was calling to tell me that her mom had just died. It shocked me. I had just been at her home the day before and her mom was fine.
This is a family of many children. I was talking to the oldest (only 16). The youngest is only 2. This is a family that I've completely enjoyed working with. It's the family that Jackie belongs to. It was her auntie that died. This is a mom that I'm not certain knew Christ. Barriers with her were just beginning to break down. She was still pretty much against the church but at least in the last couple of months she had become a friend. At first, she would barely even look at me. This changed to slowly starting to have conversations with me to within the last few weeks we could sit down and share a meal.
It's a family of really bright chldren. When I met them none were going to school. I've been slowly putting them back into school, one by one.
I spent about half of last night with most of the kids at their home. This morning I had to go to bring the second oldest from boarding school. Let me tell you: it is NOT FUN to tell a child that her mom has died. I don't want to have to do it again, EVER.
I don't know what the future holds. The oldest was supposed to start back to school next year. Will this change her mind as she now feels she has to be mom to the younger ones? Will the ones already in school decide to give up? How will they eat? How will they sleep? Where will they live? So many questions, and at the moment, very few answers.
This is also the blood relative that connected me to Jackie. Now that she is gone, what will happen? Will Jackie's mom now think that there is no relative at home and decide to come for her?
I did get to meet some of the other relatives today and hopefully some relationships can be forged to help all of the children cope. Hopefully the relatives will be willing to help the children and not leave that responsibility fully up to me. Many times here if a child is left without a parent, they are left hopeless. Even if a relative takes them in, only the bare necessities are provided. This doesn't include school. Frequently these children are mistreated and become nothing more than the househelp.
God, help me know what to do. Give me land and a big, big house. Give these children a hope and a future.

Tuesday, September 22, 2009

African Time

UHHHHHH! One of the things that I really enjoy about Uganda is that time really doesn't exist or at least have much meaning. It means time to really take time to be a friend. It means time to get to know someone. It means time to build relationships.
One bad thing is that I now frequently midjudge time. This happens usually when there is something important happening like picking someone from the airport. It seems every time someone arrives, it means my having to go through town during peak hours of traffic! And no matter what time I leave from my house, I have yet to arrive at the airport to pick someone up on time.
This is my first year to have visitors (perhaps that is the problem). The first was my boss and I was (I think) something like two hours late picking him up! I found him nearly dozing in the waiting area of the airport. Then on top of that I hadn't thought about what to feed him when he arrived. We stopped and got something to eat off the side of the road. Lucky for me, he's an easy going guy and didn't fuss or complain about my mishap.
Next to arrive: Teen Serve. I was again late to the airport. They didn't (until now) know this. Lucky for me they were a big group and it took them a while to get through immigration and to get their luggage. Therefore, I was able to look as though I'd been waiting there all along!
Then there's today. My third visitor and his first impression of me: irresponsibility. I was a little over an hour late picking him up. And I had left my house two and a half hours earlier to drive only 30 kilometers! Crazy! Nuts!
So, my advice to anyone heading to Uganda to visit me. I probably won't be there when you arrive. So, grab a cup of coffee, make yourself comfortable, and I'll be there in a few minutes (or a couple or hours)!

Sunday, September 20, 2009

Copycat

So, kids really do follow what you do. Jackie repeats almost every thing I say and wants to do just about everything I'm doing. Most times this is pretty funny, except when I'm in a hurry wanting to get something done and she's wanting to do it with me. Like yesterday. What should have taken me about an hour to finish washing clothes turned into an all day washing project. Not completely her fault as in the middle we were interrupted by the landlord. Anyway, that is totally another story.
Anyway, Jackie is very girly and loves carrying around her purse and of course it must be full of money. So, when she takes her medicine without crying or does something without me asking her to around the house, I usually give her 100 shillings (sometime 200 shillings). Not much if you put that in American currency but it works for here.
She's earned quite a bit this way. Frequently, she will sweep under the table or in the kitchen. Yesterday, she even swept outside on the stairs and then told the landlord she had done her work now she needed to be paid. That was good for some laughs! He did give her some shillings though.
What does she do with all this money that she is earning? Mostly she spends it on food. She begs Mary to take her (usually several times a day) to buy cassava, samosas, popcorn, or mandazi.
Yesterday, we were all rushing to get ready to go out in the evening and Jackie didn't want to bathe. I knew that at night it was going to be next to impossible to bathe her (in cold water when she's tired) so I convinced her to go and bathe by adding another 100 shillings.
I was the last to bathe and upon finishing I was told that since I didn't cry when I went to bathe she was giving me 100 shillings! Of course, this morning she asked for it back when she wanted to buy her mandazi. But, at least she bought one for me too!
So, it is really true: Children follow what you do and not what you say.

Friday, September 18, 2009

Herbert

So, you guys read a lot about what I'm doing here in Uganda and a lot has been said about Jackie. But, what about the other kids? I'd like for you to get to know some of them as well. So, each month as I'm doing my newsletter, the child that I write about in the newsletter I will also introduce to those of you reading this blog.

Meet Herbert!
He is one of the students in my school. Herbert is a really smart kid. Although at times the class clown, usually with his feet flipping in the air, he is one of the smartest kids in the class (usually easily acing everything we do). He likes repeating everything said in English and can already recognize every letter in the alphabet, count to 20, recognizes colors, and recognizes numbers. He just turned 3 in April!
All of this is quite an accomplishment for Herbert. I met Herbert around this time last year. He was living with his mom and they were homeless. Shortly after I met them, they moved into a house, if you could really call it a house. The place was smaller than most American showers, had dirt floors and was in a swamp, meaning every time it rained the house was flooded. They had no mattress and rarely ate. His mom would boil water for Herbert to eat for supper at night. At that time, Herbert looked less than two years old. He rarely walked on his own and rarely talked.
Thankfully, Herbert was one of my first students to be sponsored and life changed for him. He now lives in a house about the size of a small American bedroom (not idealistic to most Americans but it has cemented floors and walls and doesn't leak). He gets to attend school where he receives breakfast and lunch every day. His mom is now employed as the school cook meaning other needs at home like soap, toothpaste, etc. are being met.
There are many more children like Herbert waiting to go to school. Please pass the word along and see if we can change the lives of more children.

Thursday, September 17, 2009

This Mom Stuff Is a Bit Complicated

I am so very, very proud of my kids. They are a really amazing group of young people that are hurdling over every obstacle that has been put in their way. But, I am realizing that being a mom is not so simple, especially with 40 children.
I've discovered that with most families, when a child is brought into a sponsorship program, the family completely backs out of all responsibility. Not that they were being responsible in the first place. I've got kids that have been in boarding school for several years and the parent has not bothered to visit even once. I've got kids that have parents that have disappeared. I've got kids that get sent to school without eating breakfast. Need I go on.
So, since I am the one to fill in the gap, I frequently find myself overwhelmingly busy. Like yesterday.
I woke up with my day planned out, sure that I was going to get much of my paperwork (which frequently gets stuffed to the side) out of the way at least for a month or so. I think I must have been dreaming.
Before children even started arriving for school, one of the boarding schools called to tell me that one of my boys was sent to school without shoes. How this happened I'm still trying to figure out. I bought him shoes just two months ago. So, they told me that he has been attending class in slippers but I need to bring him shoes. So, off I went to purchase shoes. I might add that guessing a child's size when he is not with you is not that simple.
Then I headed to the school. I was able to deliver the shoes to the child. Then I was also able to check on all my kids there. Most are doing well. Some needed to be talked to. I'm still trying to figure out this discipline thing. Not so simple.
Then I was told that another one of the young girls wets the bed. Could I please get a mattress cover. This meant going about an hour back to town, looking for plastic and then looking for someone to sew it together to form a mattress cover and going an hour back to the school. A little side note: the mattress covers are a nuisance. They make a lot of noise at night. But, thanks to a wonderful friend in Little Rock, I should soon have a couple of mattress covers that don't make noise!
Back to the subject. Mary, who lives with me, needed new socks. So, I went back to town to look for them. This is when it decided to pour down rain. I had to stand in place for about 40 minutes until it stopped.
I finally made it back home around 4 in the evening to discover I again had plumbing problems. This time instead of no water, water wouldn't stop pouring from the bathroom shower. Now to find a plumber. The plumber showed up two hours and 6 buckets of water later. Maybe now I will actually have water (that is normally). This may be a bit of a high expectation but it's ok to hope.
Around 6, I realized I hadn't eaten the whole day and Jackie and Mary would be needing supper. Jackie doesn't have much appetite these days because of the chemo but needs to eat. The ONLY thing I can get her to eat is matooke. It is not in abundant supply these days so I had to go with her on my back to look for it. Even if it wasn't looking for matooke, we would have been looking for something to eat anyway as my pantry was bare (not a lot of time to shop recently). We finally found it, made it back home, cooked in the dark (since power had gone), and finally ate suppler around 8:30 in the evening.
I managed to get Jackie bathed and in bed by 9:30, attempted some paperwork, and then wanted to sleep. I realized that I had hung my sheets out to dry that morning (they had been washed the day before) and no one had brought them in during the rain. They were still wet so I just slept.

Tuesday, September 15, 2009

First Day of School

Yesterday was the first official day (for my school) of the third term. However, since Jackie spends most Mondays in the hospital, meaning I spend most Mondays in the hospital, today was our first day of school.
Thankfully, this term I won't be doing much teaching. Hadijah, my teaching assistant is still there and last week I hired Betty, a social worker who will be doubling as teacher for a while.
Anyway, my routine is to wake up at 5, have a while to myself for reading the Bible, and wake Jackie up at 6 for breakfast so that she doesn't take meds at 7 on an empty stomach.
She usually sleeps through my waking up and I usually have to drag her out of bed and practically bribe her to eat breakfast. This morning she was awake at 5:30! She had finished breakfast by 6:15 and at 6:30 was asking why were we not starting school! I'm so glad she loves school. With all that she's gone and going through, it's a joy to see her having fun and happy about something.

Thursday, September 10, 2009

So Much To Do, So Little Time

The third and last term of the school year has begun. Craziness, as usual. Shopping is done. Now there are so many children that for a few days my sitting room looks like a small shop until all of their items for school have been delivered to the rightful owner.
The term actually began this past Monday for most schools. On Sunday, I delivered all of the boarders to school. No small feat this time as I've added several new children, two being a couple of young girls off the street. Pray they will manage being in a structured environment and won't try to escape from school.
My school should have started as well on Monday. I knew last week when Jackie was so sick that there was no way this was going to happen. I decided to delay opening for another week. We'll begin on the 14th, hopefully in the new building. This will depend on whether the toilets have been completed. If not complete, we'll have to start from my house.
I'm still not real sure how I'm going to pull off beginning school next week. I still have absolutely nothing done. Not one color sheet has been printed. Not one lesson plan is finished. I'm praying for God to relieve Jackie of all pain for the next few days (for a lifetime) so that I can get some things done. I've discovered I can get a lot done while holding a crying child on my hip. However, traveling to town to print and make photocopies is another story. I haven't figured out how to avoid her screams disturbing other customers.
I just thought about something...... I won't be around for the first day of school. Jackie has two hospital appointments that day. One at the AIDS clinic. The other for the next round of chemo. Pray my teaching assistant shows up and can handle the day on her own!

Thursday, September 3, 2009

Learning to Love in the Middle of Chaos

It's been forever (or at least seems like forever) since my last post. I intended to have at least 10 posts each month this year but as you probably have noticed that hasn't exactly happened. It seems life gets in the way of my actually sitting down (or even getting to a computer for long enough) to write.
Anyway, update on the last few weeks: CANCER SUCKS.
A little less than two weeks after the biopsy was done, it was confirmed that Jackie did indeed have cancer, Kaposi Sarcoma, a form of cancer that frequently attacks HIV+ children. Immediately, we were referred from the AIDS clinic to the cancer institute (the only one in Uganda, by the way). That week was spent in the hospital daily from 7 a.m. to 7 p.m. running tests to see how far the cancer had spread. Thankfully, not far. By that Friday it was determined that Jackie should remain on the ARVs which would also be fighting the cancer and begin chemotherapy the following Monday.
We enjoyed the weekend and I'm sure glad we did. The last two weeks have been a roller coaster ride of sleepless nights, a screaming child in pain, frequent hospital visits, and of course emotions running high. Not to mention, it's the holiday break and I've got several other children at home to manage.
Now the emotional side of things. Some days have definitely been easier than others.
I am slowly realizing how much I've learned from this young child. Most of you that know me know that I'm a person that keeps myself pretty emotionally distant from people. This, thankfully, was abolished when Jackie entered my life, at least for her case. It's impossible to have a child that is so young and dependent on me to keep myself distant. And, I think God just gave her that special gift to draw people to her.
My first reaction was to be angry at God. How could He put a child in my life if He was again going to take her away? How could He let her get sick? Why did He let her be infected in the first place? It just doesn't seem fair. An adult can choose to make foolish choices and become infected and then know that he has to live with the consequence. For those adults that become infected through an unfaithful spouse it also seems unfair. But, it just seem more unfair for a child. So, I spent the first couple of days questioning God.
Then, it went to realizing that God has a plan in everything. He had a reason for putting her in my life. And, I've begun to think it's more for me than it is for her. I can't make the AIDS go away. It's a wait and see game on the cancer. But, through it all, I'm learning a lot about myself and faith. I'm learning to trust God. I'm learning that I can let my heart freely love without holding back.
So, while the last two weeks have been hectic and I'm looking at at least 4 more, I can hold on to the fact that God knows what He's doing and He's still in control.