MEET SHAFFIQUE

I realize that 2 months has already gone by and you have not met my little stars! They have made soo much progress that knowing they could not walk or stand without supervision or help will be a bit hard to believe...I thought that if I wait any longer, the kids will be off to school before I get a chance to write about them!

Many of the children here have been brought to the MOP by other family members because both parents have died. The care of the child usually falls onto siblings or grandparents who are unable to financially manage the child or their disabilities. Some single mothers have no choice but to ask the Brothers to take the children in because they cannot work and care for the child at the same time. Many of these single moms have more than 1 child to feed. Proper medical care can be financially devastating and completely out of reach for most Ugandans. Children with disabilities require more help than most families can manage. Some of these children are sadly abandoned because it is still thought that a disability is a curse. Families do not want the "curse" to spread to the other children and will leave a disabled child to fend for themselves. The LOVE and care that the Brothers provide helps these children begin to heal and gives them a FAMILY as well as a sense of belonging.

Shaffique and Brian (my helper) 

Shaffique: One of my first PT clients at Busega. He is a very smart and sassy young man with hydrocephalus. He is quick to smile and generally knows the lay of the land. He did receive a shunt early on which prevented his head from growing as large as Vincent’s but he was still left with delayed speech, poor balance and poor motor control. Shaffique was only able to stand for short periods of time holding onto bed rails, tables or the tricycle with help when I first met him. He generally did not speak but used eye gestures and a few simple words. He also liked to break out into full blown tantrums if he could not get his wants/needs expressed or if his “wants” were not answered within 30 seconds or less. I found myself constantly asking Shaffique, “ What do you want? Use your words. I can’t read you mind!” Mom….are you reading this???? I seem to recall this was a favorite saying of yours as well! Alas, it never worked. I would take him back to his room and usually in an hour or two he was back to his smiling self. 

My little "football player"

                  AFTER 2 MONTHS OF PT: Shaffique can now stand without pulling himself up on an object. He can get on and off the tricycle on his own (and ride it without my help). One can find him walking in the dorms, climbing up onto the bunk beds and cruising the bunks to socialize with his dorm mates. He is also speaking in clear full sentences! This is both in Luganda, his native language, as well as English. MOVING the body helps kids learn to communicate....this is something I knew but the results have been so very obvious! He can go up and down stairs and ramps using a railing with me only standing by and he can now walk a distance of 20 feet before falling. Shaffique's most favorite thing to do is "kick the ball" in PT. He can now do this without falling 50% of the time.

Standing in front of Mary

Despite all this, any walking still takes all his energy and concentration. Kids need a lot of encouragement to have the motivation to walk for this reason. They will fall much of the time which can be terribly frustrating (anyone learning to ice skate can attest to this). Shaffique has responded well to the encouragement of the Brothers to walk. He has made good progress for this reason because he is walking not only when I am there but when I am not!

I was able to take some pictures of him wearing a USA Tee...It was unplanned but we got some good shots! Shaffique as well as the other children LOVE to have their pictures taken! They will chase me around as soon as the camera comes out. I rarely am able to take a picture of just one child as 8 or more will try and jam in the picture, waving wildly and make funny faces. I wish I brought a better camera. I am using my phone to take pictures and many of them are too dark to post. RATS! 

LAKE SHRIMP!

Father Raymond and his boys

ALL is WELL at Busega. All the children are nearly better and I am recovering my strength. Tonight, Friday, I was lamenting the fact I am still feeling weak. A bit of a pity party I would say and I was struggling to get my old JOY back. This is when God can have a sense of humor.....or so should I say, the Brothers in God's stead.

Never let it be said that the Missionaries of the Poor Brothers do not have a sense of humor. I sat in the conference room doing my paperwork and Brother Sonny approached me with a bowl of something to eat. He offered me a "special treat". I looked in the bowl to see inch long green “things”. It is always a good idea to inquire about anything that does not look familiar while in Uganda before putting it in one’s mouth. " So, what is THAT?!" I said looking in the bowl.

BEFORE (YES alive to ensure freshness)

Brother sonny replied “It’s Shrimp”. I looked again and saw some little black eyes at the top of the inch long bodies, obviously with shells…."But they are green!” I exclaimed. Brother Sonny, without missing a beat said, “That’s because they are Lake Shrimp” I had never seen such small shrimp and inquired if I was to peel it first. He said just eat it whole. I tried one, which tasted like a French fry. THIS should have been my first clue!

During Preparation
(Still alive by the way)

He gave me a cup’s worth and I munched on those while I continued to work. Later, Brother Sonny returned to collect the bowl. “How did you like them?” he asked me. I replied that they were pretty good though the oddest looking and tasting shrimp I had ever had. Brother Sonny then smiled a bit sheepishly and said “Well, that’s because they were really GRASSHOPPERS”

“WHAT!?” I jumped out of my seat holding my mouth with a sudden sense that my stomach was going to split open and green things were going to come pouring out. “You didn’t!!!” I shouted….Brother Sonny said smiling, “Welcome to Uganda!” and chuckled. He then told me they had done the same thing to him when he first arrived. I told him to watch his back from now on…paybacks….

Today Father Raymond arrived at Busega with a large bag. “Come gather the children! Who wants to help prepare grasshoppers?!” The bag was teeming with live grasshoppers. Odd to think the arrival of a locust in the city would be such cause for celebration but it is.

AFTER
(get a load of their beady little eyes)

The Brothers came in to the volunteer room where we were eating lunch with a huge plate of prepared grasshoppers. Douglass the Medical Officer was excited about this treat. He told me his Mother LOVES them and says she would never get tired of them. I asked if they fry them in grease as they appear oily. Apparently they just fry them with salt, the grasshoppers have a lot of fats in them and do not need any oil. One of the Sisters yesterday told me she and her family eat them live. I mimed gagging while she laughed saying “They are very sweet!”

Well, for those of you who are curious, I can honestly say, grasshoppers DO NOT taste like chicken!!!!

SUFFER THE CHILDREN

The boys have all been coming down with some bug this week. The Medical Officer, Douglass, has been busy with patients (in addition to all his assistants). I am sure others can all relate to the fact that that when one child in your home gets sick, it usually spreads like wildfire. Sure enough, every day there were at least 2-3 new children that were dropping like flies.

I did more nursing care this week than PT. I did feel compassion for their discomfort trying to cover them in blankets and rub their heads and back. There was little else I could do. Most of them lay there alone for at least 2 days. The Dorm matrons were also getting sick. Despite this, one sick matron lifted her mosquito net and gestured me to bring Trevor (who I could not console despite all the diaper changing, rocking and cooing I did).  Trevor is autistic, which makes it more painful for him when he has discomfort of any kind as he does not have any tools to process this information.

She was able to get him to calm by getting him to smell some menthol rub and listen to music on her cell phone. I was overcome with her ability to calm him and felt horribly inadequate. I changed diapers and clothing and spent time rubbing backs and checking on the kids. I guarantee it takes compassion to clean up very messy diapers without gloves and wipes using only your hands, toilet paper and water. Rags are in short supply. It teaches one compassion on a deep level.

Today, Friday, I began to feel the tingles and body pain of a developing fever. It was mild so I ignored this hoping it would pass as I drank more water and continued my work. By noon, it was coming on stronger though still tolerable. By 4:15PM, teatime, I was considering lying down to rest for a bit. By 5 PM I was in agony with a full on fever and body aches, headache and chest pressure and pain. These were all the same symptoms the children had been having all week.

I sat there in the chapel waiting until the 6 PM transport praying it would be on time today (it rarely is) I would have taken a boda boda home if it weren’t for the rain and thunderstorms. I sat there counting off the seconds and praying for the time to go faster.

I realized this moment could be a gift to me. I pondered the children and realized the agony they were in when they were brought to the clinic to see Douglass. I felt their pain at this moment acutely. I decided to “give up the pain” for the children. Though the children did receive acetaminophen and antibiotics while Douglass was there, I thought they had to suffer without anything when he was gone (The Brothers later assured me that these sick ones get special care including medications from the matrons overnight). I think about the poor throughout the world…they and their children do have to suffer without care. Who is going to care for them? Who is going to Mother them when they are ill? I DARE anyone to suffer the pain of the Flu without any Tylenol, decongestant, cough syrup or Benadryl. I decided to try (though later failed).

The truck had driven up and had been parked there 5 min waiting for the Brothers. I could not tolerate waiting any moment longer and sent a worker to ask Brother Festis if we could leave NOW.  He came up immediately and gathered the Brothers to head home. I was holding it together in front of him though tears had been coming prior to that. I hate the fact I am reduced to tears when I get sick…WHAT IS THAT?!

They are always kind enough to let me sit in the cab of the open bed truck being a volunteer. THANK GOD as today it was raining hard. The Brothers had to suffer getting soaked and trying to huddle under a small tarp in the back of the truck freezing. I was rocking and praying that I could make it home, as I was rapidly feeling worse. Brother Festis leaned in to ask how I was….anyone knows when you are on the verge of tears and someone shows compassion, it opens the floodgates. The driver and Brother were kind enough to allow me space to get myself together.  We said the rosary (being 6 PM and rosary time), which helped me focus until we got home.

I barely made it to the shower (a cold shower today was agony though I knew it would bring my fever down). I took 2 Tylenol and jumped into bed and under several blankets. I kept thinking about the boys….how they were alone in their pain, I was hoping they had routine Tylenol to help them through the agony of the Flu.  I thought about how they quietly reported their pain and symptoms to Douglass and how the tears were streaming down their faces. Douglass cared for each one as if each child was his only son. I realized how much more compassion I should have showed them, how I should have brought them water and made sure they ate. I should have cried with them and held them tighter. I should have cared for them as the Sisters are now caring for me.

Can one moment of my empathy or regret relieve any of their suffering? NO. It then stands to reason that I am no better a person for having the experience of empathy unless I do something about it. This is where I fall behind in caring for the least of my Brothers and Sisters.

These little ones are so easy to ignore. Their pleas are minimal and quiet. It’s as if they have suffered so much in their own abandonment that they take on new suffering as if it is just a fact of life. They are resigned to suffer the pain alone and do not expect anyone to rescue them.  Unless a person knows their normal behavior, they would never notice these little ones going off to lie down on a bed curled up and silently crying.  It is as if they are suffering the pain of the abandoned world. They cry the tears of all who are alone and in pain. We should be so lucky to be in the presence of ones like these, if nothing else, to teach us the meaning of true suffering. Maybe we can bear our own with fewer complaints and begin to look on others with more compassion.

LEARNING TO UNDERSTAND

I have been trying to spend Mondays at the Good Shepherd Home to work with the 2 PT’s there. Presently, the assistant to Father Henry is back in town and would like me to work directly through him re any PT changes. My job is to observe and make recommendations for new ways to mange the PT schedule and treatments. This is a hard to do, as the two of them feel a bit apprehensive with my presence. I understand this completely.

I have been trying to work as their “assistant” to get a better grasp on how they manage the many children they have to see. I was looking forward to being able to “talk shop” and have something in common with some of the women here. I am especially looking forward to learning serial casting, as this is a common treatment for contractures. There is a cultural barrier in that the Uganda women are very soft spoken and do not divulge any information. It is very easy to take this as standoffish without knowing fully what is going on in their heads. Trying to figure this out is also a stretch.  I feel my presence just made them more anxious and was not helpful for them or myself.

I returned to Busega Tues feeling like I had wasted most of the day Monday (a very hard thing for me to do as I feel the pressure of time slipping away) We don’t have the forms and paper needed to start documenting treatments, a goal of mine for this week. The plan is to use the same forms as they do in the Mother House in Jamaica, which makes perfect sense.  I must to learn patience as time here moves at a much slower pace than I am used to or comfortable with.

Friday, Grace and I scheduled an appointment to take Vincent to the Katalemwa clinic for a fitting of a helmet. Vincent has hydrocephalus that was never treated with a shunt. He was taken in by the Brothers and given medical care. The doctors reported that the hydrocephalus was arrested (that Vincent’s already abnormally large and deformed head was no longer growing in size therefore a shunt was not indicated). Vincent started walking this spring, which allowed him to go to school. He still has balance problems and occasional falls.

Patricia, the volunteer PT, tells me that Vincent had a horrible fall in the bathroom at school a couple months back. The toilets are ceramic squat holes in the ground. Vincent slipped and fell lodging his head in the hole. He was stuck there for several hours face down until the teacher found him. This was horribly and understandably traumatic for him. I only tell this story, as it is important to understand the struggles these children have to endure.

I wanted to visit Katalemwa, as this is where many of our children receive rehab and bracing following surgeries. I was hoping to meet the orthotists and see how the referral process was made. I was also hoping to get information on where to obtain the needed rehab equipment for our new gym as I was struggling to find any medical supply stores in the area.

Little did I know that this trip would teach me more about what people have to endure in the community in addition to my original goals. We waited until the rain stopped before we left Busega (no one travels in the rain unless by car or taxi). We started walking the muddy wet back road to reach the main road for a taxi (what we call a bus).  Poor Vincent was struggling, as his balance was already impaired. Grace called a boda boda driver to take Vincent and I to the taxi park and she took another one shortly behind us. I held onto Vincent tightly during the trip feeling the sliding of the boda’s tires on the slick mud.

We then hopped into the taxi jammed with people. Taxis are Chinese made vans, which have the seating capacity for 15 people though the taxis take in at least 20. There is a driver and a conductor. The conductor sits at the window looking for riders (no need to stand at a bus stop…just wave and the taxi will stop). The conductor takes in the money (usually 1,000 shillings or about 40 cents) and doles out the change. His job is to be sure the taxi is always at full maximum capacity.

Grace cared for Vincent during the trip like a mother, wiping his nose and stroking his head as we travelled. People would stare at him and his rather large head. Grace explained that this was a good community awareness exercise as people in Uganda hide their disabled from the community. Most people think disability is a curse or witchcraft. Grace uses this as an opportunity for community education. My respect for her was increasing as my understanding of her and the difficulties of the commute were becoming more obvious.

We managed to arrive after 2 taxis and 2 boda boda rides. Grace’s home is near the Katalemwa clinic and she has to make this commute daily to and from work. This is at least an hour each way if not more depending on how often the taxi decides to stop or wait for riders (they like a full van). I felt like I was in a different world. I realized how sheltered I was in the Monastery, how alone and out of place I felt out in the community. How uncomfortable I felt when men came up to me shouting and waving their finger at me (I had no idea what they were saying and just walked by ignoring them) While in the Monastery, I had forgotten that I was white, though it was very evident out here.  I stood out like a sore thumb attracting unwanted attention along with Vincent. I tried to take it all in with stride as Vincent did. He had to tolerate stares and taunts whenever he was out.

You could say it was a very productive in more ways than one. While at Katalemwa, I was able to locate equipment that I could purchase for the PT gym. I was able to speak with the rehab staff re the durability and cost of each item. I did note that our PT room, when finished, would far exceed that of even the Katalemwa clinic. This made me smile, as the children of the Brothers will have the best in the area. The helmet fitting unfortunately for Vincent did not go well. The initial cast was taken 1 month ago. It no longer fit when they did the trial fitting today. This meant that Vincent’s head was still growing. This is of great concern as it means his hydrocephalus is not arrested as previously thought.

The time it takes to get out here makes decision on what to do more difficult. Grace and I discussed whether or not to do another casting or wait for an MD consult, which may take another month. She decided to re-cast and schedule a fitting for next week. She also scheduled an MD appointment for the end of December. I was able to watch the orthotists work. They did a great job and were very caring towards Vincent.

Vincent had a snack earlier thanks to Grace, though now it was nearing 2 PM. I was hungry and Vincent was tired having just gotten over the flu 2 days before. I suggested that the 3 of us go out to eat for lunch on our way home, my treat.

We stopped at one of those metal looking shops in a local trading center, which turned out to be a restaurant. It was a small dark room with 6 small tables and rickety chairs with plastic Coke tablecloths. We washed our hands outside the front door where a big Gatorade cooler sat on a wall with a bucket underneath to catch the water. There was a hunk of soap but no towel.  I was a bit worried about the food, as I had been warned NOT to eat at any vendor’s shops.  This was Grace’s community and she was quite at home here so I was less worried.

I didn’t speak Luganda so I asked Grace to order for us. They had traditional dishes (a meat, vegetarian or fish dish with sides of matoke, greens, rice or beans). I told Grace to order what she likes and we would all have the same. Grace’s face lit up when she said she loves fish. The woman spoke with her and grace’s face fell. Grace explained that this would cost 5,000 shillings or 2.00 US dollars each (a HUGE expense for the average Ugandan and most likely more than the usual cost given my skin color). I told the waitress we will have the fish and again Grace’s face lit up.

I asked Grace what she has at home for supper. She explained that they usually just have pashto (the white maize flour paste) and beans. There are days when they just have tea. Due to lack of money or fuel for cooking. Grace’s major meal is at lunch while at work. The meals for the volunteers usually consist of rice, meat or chicken stew, beans or greens and a banana and cold water. This is a feast compared with what people can afford at home. I remember the stories of the nurses explaining that often people eat only 1 x day.

Our meals were large portions and Grace and Vincent managed to clean their plates while I struggled. Part of this was due to the fact I found a large worm in my fish. UGH…I just moved it to the side and continued to eat though carefully inspecting every bite.

We finally made our way back to Busega via boda boda and taxis.  We got out of the last taxi and a local woman handed Vincent a 500-shilling coin.  She looked at him with compassion. Vincent was quite excited and immediately asked for chapattis (a fried flat bread which I also really enjoy) with his new treasure. It didn’t matter that we just had a huge lunch 45 min earlier. These kids can eat more than most adults. I think they get used to the fact that they need to eat food while it is there as there might not be any tomorrow.

Vincent and I were near the Busega home travelling on our last boda boda ride when the 3 PM truck taking the Brothers home passed us. It made me smile and feel good to have the driver honk and all the Brothers waving, smiling and calling out to me saying, “come Sister! Hop in! You’re late!” I waved them on feeling a warm sense of belonging. I realized how fortunate I am to have a BIG family to stay with and come home to after long days at work.

I have come to appreciate the struggles of daily life for the workers such as Grace and Miriam. I have a better understanding of why they often come late. I understand better the slow pace they move as if in a constant trudge through the struggles of daily life. I see the discomfort and the poverty with which they have to live and work despite the fact they are paid a small fee and are “rich” in comparison to the average Ugandan. They too must find a way to sustain in order to persevere. They are working as hard as they can tolerate though to us it looks as if they move to slow or rest too often. We have comfort to return to at the end of the day. They live in less comfort than what the children have at the Busega and Good Shepherd Homes.

I have come to highly respect Father Hulong and his community of Missionaries of the Poor Brothers. They are giving life, love, comfort, medical care and meals 3 x day to these abandoned ones. They do it with joy and enthusiasm. They work harder than anyone I have every met. They work hard but also sleep little, rest little, pray often and do it with a smile day in and day out. I cannot keep up their pace. They must do this only through the grace of God. They are an example of true “Joyful Service to the Poorest of the Poor.” I know they will have a high place in heaven and can only hope for their prayers of intercession to someday allow me to enter even at the lowest “rooms” of God’s mansion.