Last Patongo glimpse

Going through my last pictures of Patongo area, I found these which show a bit more of the area and work that I was part of with Medair up until July.
My favourite tree outside of Patongo IDP camp where I would ride my bicycle to in the evenings to relax and watch sunsets. I would be alone for a few minutes, then a dozen children would run through the grass to the tree to sit and stand watching me, as I watch them with the sun streaked clouds in the background.
Staying in another IDP camp, called Adilang, these 2 siblings are very characteristic for this area of Uganda; young ones watching even younger ones.
Riding back from the giant tree one evening, I came across many people carrying their food distributions from the WFP, World Food Programme. This elderly woman was balancing hers on her head and is reflected in the mirror of my bicycle. She was starting the walk back to her hut through the grasses and we stopped to greet each other. This is on the Community Action Planning workshops that the team I was managing would facilitate. 3 days of meeting with community leaders and elected women, men and elders, listening to what their environmental health issues are in their camp. From the issues, they would prioritize, come up with solutions and create action plans to take steps to solving them. This method was impressive because when the community took ownership and did the work themselves; changes actually happened.

These school girls were lined up at the borehole gathering clean water in their jerrycans. I loved the morning air mist behind them in this photo. The three Patongo children, Rose, Dominic and Nancy were stars in the film WAR DANCE, an amazing documentary about the situation, struggles and resilience that Northern Uganda has faced. ShineGlobal, the producers of the film came to Patongo to show the documentary to the community; both a therapeutic and wound-opening night, and glimpse at how far they have come in returning to a peaceful life. Gathering with thousands of Acholi under the stars to watch the film in an open field was incredibly meaningful and touching being my last week in Patongo. For those that haven't seen the moving film, you can watch the trailer at http://www.shineglobal.org/

It may be hard to tell from the photo, but this is a 1 inch webbing rope that is pulled tight between two trees, called 'slacklining' in America. I've recently learned how to set up this very portable balancing act that requires a lot of patience, balance and focus to steadily walk on with bare feet. Great for meditation and personal challenges that mimic life situations in many ways. It simply requires effort; and language barriers are no issue in this straight-forward yet thrilling task. What a great thing to bring to an IDP camp, right? turned out to be perfect, with many trees, many children with not much to do; they flocked to the trees and after a few examples of what to do, were trying while holding my hand nervously, jumping up cautiously with their dirt covered feet. With confidence building each time, young girls were even trying and soon they were supporting each other with their own hands, balance and encouragement and I stepped back to watch.
Lake Oswego High School Spanish club spent last spring collecting soccer balls for kids in the IDP camp and there were joyous shouts when they received them !This was at my Medair goodbye party at our house in Patongo; filled with Medair friends and all the children I would visit with each day after work. They came dressed to the nines, joyfully ate chicken, rice and beans and danced til their bed time.

Sharing Uganda

Mom and Dad venture to Uganda ! A lovely visit filled with so many laughs, many explorations of the country, and a taste of why Africa is part of my heart....a few pictures to share their visit...Mom and Dad enjoying the view


Our tukul under the full moon


Out to lunch with dear friend Anna who I worked with in Patongo


Visiting Nagawa, a crowd of kids swarmed around us, Mom and Dad are there in the back !


Murchison Falls National Park, Game Drive, a friendly giraffe crossing the road

Kafero and I enjoying savannah hugs


lion blending in among the grasses !


a powerful shower at Sipi Falls, Mt. Elgon, bordering Kenya

Mom and Dad at their scenic grass hut at Lacam Lodge, Sipi Falls


Kafero's little cousins peeping through a window


At Kafero's ancestral village; dancing with the community in their traditional tribal Bigusu dance


Dancing, stomping, moving, drums, rhythms; a beautiful welcome to their culture and mountain village



Mom and Kafero's Auntie exchanging a hug

Bright Days with a girl named Nagawa

Nagawa; a smiley, energetic girl of the slums, where everybody knows her name. Carried by her dirt covered bare feet, she holds her 8-year old head high, smiling at everyone.


Reading the newspaper one January day, I came across the following article, which sparked a friendship with this amazing girl:


UGANDA DAILY MONITOR NEWSPAPER + January 22, 2008
by STELLA NAKAKANDE & HARRIET. S. OKOT
She suffers mental and physical retardation; A victim of genetic disorder

All she is interested in and understands is playing. she definitely stands out from other children with her brown hair and potbelly probably due to malnutrition. At eight Oliver Nagawa has never been to school because she suffers from Down's syndrome. The condition is a genetic defect of the chromosome in the 21st position which largely causes both physical and mental retardation, Dr. Haruna Seruli, a paediatrician at Mulago Hospital says.

Children are borne with this condition. Humans are meant to possess 23 pairs of chromosomes making it 46 chromosomes. But for Down's syndrome, the child has an extra chromosome in the 21st position making a total number of 47.This defect on the chromosome leads to both physical and mental retardation. This may not be noticed at birth - which was not the case with Nagawa who was born outside a hospital setting to Ms Melida, 40. Ms Melida, a resident of Namuwongo, a Kampala suburb sells fried cassava for a living.Nagawa was normal and heavy at birth. This according to the mother was not peculiar because her baby was progressing well.However, at about one and half years Ms Melida noticed something was amiss with her third and last borne daughter."Instead of talking like other children do at this age, all she did was make lots of noise," the mother says. At three years Nagawa began to walk, a whole lot later than other children, a manifestation of low growth. She only dragged herself around and she could not support her weight. There were more questionable things that happened after this."Her legs, from the knees to the feet would swell and her skin would peel off like a snake," Ms Melida says. This went on for two years. Unfortunately Nagawa did not receive any medical attention due to lack of finances. It is at this age that the symptoms of the disease began to manifest. Nagawa developed an abnormally big tongue, a small mouth, small sunken eyes, a flat forehead, and small ears. She also has short legs and short fingers. She is mentally retarded, which according to Dr. Seruli eventually affects the development of different senses like speech, sight and hearing. Children with the syndrome often suffer from digestive disorders such as constipation. Nagawa's speech has since failed although her hearing is clear. In her community she is referred to as a 'kasiru', to mean dumb.Nagawa cannot even wash her hands let alone bathe herself. Feeding herself is also another impossible task, all she does is roll her fingers through the food and put it in other parts other than the mouth.It is, however, not an every day thing that a dumb person suffers from Down's syndrome. It is only so if the other symptoms manifest. Dr. Seruli also adds that children with Down's syndrome have a weak muscle tone such that movement like in Nagawa's case is difficult. They may not even be able to hold their hands up. These children often have holes in their hearts and are more likely to suffer from leukaemia (cancer of the white blood cells).Global statistics reveal that one in every 700 babies born may have the condition manifesting, making it a rather rare condition. The doctor, however, notes that the chances of this increases with maternal age. "This leaves a 1% chance of mothers above the ages of 35 or 40 having a child with the syndrome," he says, "and when this child grows up, there is a 50% chance of having children with the same defect."On the upper side, life expectancy of these people is 60 if no complications are acquired. The condition, however, can be detected during pregnancy using an ultrasound - and a therauptic abortion can be carried out. The disease cannot be healed given that the defect is genetic.To date, Ms Melida has not heard of Down's syndrome despite the fact that Nagawa shows all the visible signs and symptoms.For Melida, however the medical jargon may not mean much, she is only desperate for assistance as she has spent her eight years watching the child she loves spend each day of her life indifferent; with neither a care nor an understanding or even a chance at education. Nagawa's mother can be reached on 0782289797.



After reading this article and feeling many emotions, I called the mother and told her I would be in Kamapla at the end of January and would come by to meet them. I was so eager to share pictures and stories of my sister Amanda, who also has Down Syndrome, and tell her how AMAZING these individuals actually are, and they aren't victims at all !!! In fact, this population brings more smiles and laughter to a situation than I have ever witnessed before; and that is a beautiful gift that I hope everyone can witness.



The day in January that Kafero and I set out to find Nagawa and her mother, the mobile listed was not working, so we wandered for hours, with the article, looking for any clues on where we could find her. Being sent all over the market and slum, people looking at the picture in the paper of Nagawa, and being given directions like, 'go talk to the old man eating goat on that bench', who would direct us further - it was an investigation we nearly gave up on; wondering if she really existed? Eventually we ended up at a home of a woman with a child with cerebral palsy - well, closer, but it still wasn't Nagawa. Working our way through the open sewers, dirt alleys and curvy paths, we rounded a corner, and there she was! Sitting on her doorstep, smiling! She ran and gave us hugs, even though she had never met us before. We sat down and spoke with the mother (well, Kafero speaks her language, so he translated my questions and her answers). She appreciated the pics of Amanda and hearing that DS is something others have, and even across the world !






Since that day, Nagawa has been our special friend, and stopping by to visit her is a pure joy! She's started at the local school and although she understands everything in her language of Luganda, she doesn't speak, but makes noises. It's easy to tell she comprehends what is going on, and she is VERY clever ! Just like my sister too, and all people with Down Syndrome I've met! Also, she loves singing and dancing, playing and running off without telling her mom where she's going! Since starting at the local school, these days we can find her trying to write the alphabet in her notebook, and even saying the vowels 'a, e , i , o , u' .

A recent trip to the Uganda Zoo and Lake Victoria; full of splashes in the water, and monkey chases and rhino hunts !

She's such a gem !

Changing moons...

It's been awhile, a long absence from sharing here; a flashback through several months;

February; taking some of holiday time in Tanzanzia, Kafero and I hiked Mt. Meru, overlooking

Mt. Kiliminjaro with impeccable timing, in amazement hiking during the night to reach the summit by sunrise, we were lit by the full moon, and guided by the southern cross above the summit. Winds howled, rocky ledges, alpine temperatures, the full moon was whisked away by the lunar eclipse, and as we reached nearly 16,000 foot summit, the sun rose over Mt. Kiliminjaro as if it was rejoicing in the triumph of making the journey.
March; Lake Bunynoni near the border of DRCongo and Rwanda on our R/R (rest/relaxation) week from the field, bordering. Relaxing tents with views overlooking the water and mountains, boat rides, wonderful fruit salads, coffee and chats. A decadent week of breathing and reflecting.
March 14th, departed for the US to return for my second thyroid cancer surgery, a much anticipated return, which was expected to only be several weeks at home proved to reveal more medical attention that any of us anticipated. Time with family and friends was just lovely and I’ve learned much more about asking for support when feeling the need for it. April; The medical world feels overwhelming and intimidating when every day you are faced with more information, studies, recommendations, treatment plans, percentages of this and that, sign this, take this pill, surgery here, body scan for this, lymph node uptake, other cancer risks. It felt like a full time job, that I didn’t apply for, nor wanted. However, I must show up for this job every day, and for the 2 months of medical mayhem, I learned how to make the most out of it. After the tears of frustration and fear are dried up, what do you do next? Maybe yoga in the backyard with Jason? Paint portraits with Amanda? Write poems? Draw? Call friends? Pray? Make a cancer documentary ? Try experiments with your radioactive treatment beams ? Laugh about it ? Giggle with baby Eli ? Ask my dad how he coped with his cancer ? Watch 1950 films with mom? Cook African soup with Jill ? call Kafero to feel how life and love is nurturing? Support from Alissa with social stories? Listen to Annas encouragement about prayer ? Open up a letter from Katy? A book of poems from Lovella ? Analyze life with Garee and realize through the power of question, what my future path may hold through clarity and learning with art? Connect with others that have cancer? Read about nutrition and make changes to what I’m putting in my body ? Also, through the contemplation of life and choices of how we spend our time, refined a bit of my focus perhaps. Connecting with people and sharing moments has always been dear to my heart, but had a new sense of what that meant. I still feel blessed, and somewhat guilty about having the choices, to have the choices in this medical care; because I realize some of us are of the few percentage in the world who have access to medical care, insurance, and options for treatment. When finishing my treatments, scans, bloodtests and maximizing what could be done in those moments, I organized a Creative Healing Celebration at the Joy Center in Ishpeming, which was a touching evening of family and friends sharing stories of hope and healing. It was such a positive ending to this part of the cancer journey at home; and realizing that the support around us is so meaningful and necessary at times like this. We gather for many reasons in life; graduation, birthdays, births, weddings, deaths, baby showers....what about healing? It was a lovely time; and a sense of closure.

A short time after that ceremony in May, came shock to our family. My maternal Grandpa Withers, passed away on the morning of 15 May, and my paternal Grandpa Sheridan passed away 24 hours later, on my dad's birthday. So, as I was thankful I was not back in Africa when this happened, with mourning also comes family connecting; and with both funerals the following week came both tears of sadness, and joy of having a deeper understanding of their lives, not just as Grandpas, but in the eyes of childhood friends, husbands, fathers, and loved ones. As they are greatly missed; they touched so many lives here; and that will live on.
June; Being back in Patongo IDP camp now for about 4 weeks has been a joyous time of reconnecting with my work team here, community people and friends. It also means so much to be able to come back to Uganda in the healing process, because it represents 1) my life to share with others is continuing and 2) I am healthy to come back to the calling and purpose I feel ; refining that calling and what I'm putting energy into is changing though. I have felt this is the right time to move into psycho-social work with children in Northern Uganda; so I will be leaving Medair July, and connecting with some organizations around that I can contribute with the children of this area. I feel so enthused about this, and am looking forward to the transition and keeping my heart in Uganda.

Former Abductees Group

A group of former abducted youth, and children who were born into captivity, are now back in their communities and performed traditional Acholi dances in Patongo with a beat of resilience.

Ethiopia revealed...

Ethiopia is revealed through its....tantalizing coffee, crisp alpine air, shepherds always with a stick, winding roads, ancient villages, churches carved from stone, markets that awaken the senses, a calendar that makes it the year 2000, dancing that shakes the shoulders, parched blond grasses, avacodo and mango juices, friendly eyes and smiles of the people...

a few more views of Patongo

Morning tea in Patongo





















local school girls taking a rest

















befriending our goat before the slaughter
(I'm still vegetarian)

Michael Franti and Spearhead : Hello Bonjour

Music that speaks

Emotion

Take some time to look at the emotion on the faces of some youth.

What are you feeling today?