| Dec. 1, 2009 |
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Wow I just can't believe it's December...unbelievable. Here are some photos from a farm outing - love love love them! Our friends Brian and Shoshannah went with me and Brian graced us with these amazing photos after the fact!
Boy the 4 day weekend was wonderful for us. I got away for lunch with a friend, Don got to watch his beloved Pitsburgh Steelers. Sunday was the best day I've seen Cody have in months - smiling, giggling, running up to us requesting hugs and pats - we were in heaven. Monday and today took a quick turn and who ever knows why. Out of the blue and for no reason, he will just start the day with screaming, shrieking, mania. On days like these we weather the storm and battan down the hatches. That just seems to be the rhythm of this mitochondrial disease....he has what I call 'good days' which are when we see a few smiles, he doesn't freak out, and has minimal seizures. GREAT days are like Sunday - big grins, big fun, low seizures. Then there are 'bad' days and 'horrible' days. I'd qualify today as 'bad' - tons of seizures and sensory desperation - very little sleep - etc. A horrible day would mean big giant seizures. Not that you asked - but there's my little grading scale! Casey continues to have great days everyday - the lucky little guy. His speech is booming and he's putting full sentences together. His favorites lines are 'I'm busy right now'.....'mama, I don't need help, I'm a big boy now'.....and 'mommy butterfly, I'm sad, hold me.' The last ones melts me, and is so endearing. He has definitely gotten over his 'robe' phase and now won't even go near it. Fickle little creature. Now he will only wear shirts with dinosaurs on them. I can barely keep up with his pecadillos. He said for Christmas he wants a baby sister and wants to name her 'Curly.' Gosh - even I would love that gift! Sadly, I'm too old and too crazed to attempt to give him his wish! Although we would have LOVED a 3rd child and did try our darndest for one over the years. Seems like it wasn't meant to be and perhaps it's for the best since my hands are definitely FULL as it is! I leave you with an update about Buday from Maggie's site. BudayMy first day back in Surkhet from the European Summit, I got a call on my cell phone from the security guard at the hospital. He was calling to tell me about Buday who had again been admitted into the hospital. "Welcome back to reality," I thought. "It’s much more glamorous to be able to travel to Europe and talk about your work sometimes than it is to actually do it."
Buday is the boy with epilepsy who was recently orphaned and lives on the streets. He’s mentally disabled and doesn’t have any known relatives. I try to do what I can, give him a change of clothes, and a blanket and food now and again. This is his third trip to the hospital this month. He wanders around the streets, has a seizure, cuts his head open, and then the police bring him there. Then when he gets better he walks himself out of the hospital to wander the streets again. His father used to rent a room next to the dry river bed in town. Buday seems to recognize it and hangs around there. I managed to find a woman to look after him and give him his medicine and do the best she could. It’s been 6 months and I think she’s burned out. She says he won’t stay in one place. When she goes to bathe him, he runs away from her. He can no longer feed himself or speak coherently. So he wanders the streets and sleeps in the sewers. He has wounds from all of his falls. He looks like a mangey street dog, all skin and bones and you can smell him from 20 meters away. I’ve tried reaching out to every single organization in Nepal. I’ve gone to Kathmandu and checked out 5 different facilities that supposedly keep disabled children. They say they can’t take him. He’s too old for the orphanages, too young for Mother Theresa’s home for the dying and destitute. He doesn’t have enough self-care skills. I've made dozens of phone calls to every single organization working for mental health registered in the social welfare center. Nothing. My friend Rich tried and tried. He rallied everyone he knew, sent dozens of emails. I felt a certain rush with winter setting in, knowing in my heart that he probably won’t make it through the cold season living like he is. I brought him to two different doctors to get him accessed. He has epilepsy they told me, and from all the seizures and damage to his brain he’s now retarded and practically blind. I went yesterday to check on him in the hospital. He is now officially the worst I’ve ever seen him. I took him last month to Father Jack’s office to get him accessed by a good doctor from Nepal Gunj. It was hard for me to get him there. Watching everyone taunt and tease him. He couldn’t walk. I couldn’t get him on the motor bike. His snot and urine were all over me. Finally I got another street child to help me hold him and when we finally made it to the office, I started bawling for the first time in months. It was the saddest most pathetic thing I’d ever seen. This boy with no one and nothing in the entire world, dirty, filthy, dying there in front of our eyes. Pathetic. I took him back to the house yesterday afternoon while the kids were in school and sat him in the sun on a grass mat. The neighbors stared like they always do and I swear every fly from the entire village came to feast away on him. I heated up 2 kettles of hot water. I brought out some roti and fresh honey and sat there in the sun watching him try to eat it. Within two minutes he was lying on the ground having a seizure. There’s nothing you can do during a seizure so you just sit there and watch, feeling helpless and wait for it to pass. It finally did. He laid there and slept for a while. His stench is so bad it’s almost unbearable to be near him and you feel like vomiting. I lost my appetite for hours. He’s is covered in wounds, in his own feces, and urine. The hospital had asked that we remove him from their grounds outside where he was sleeping. I gathered the shampoo and the soap and thought, how am I possibly going to do this? I can’t do this. Then I thought about the Mother Theresa book I read a few months ago. I wonder what Mother Theresa would do right now if she was here with me? “She’d probably roll up her sleeves, suck it up, and give him a really good bath,” I thought to myself. “Stop thinking about it and just do it.” As I added cool water to get the temperature right a lot of thoughts crossed through my head. I’m mainly angry and frustrated that it’s gotten this bad and that there isn’t a single treatment facility for cases like this in the entire country. So I started scrubbing him from head to toe, this little skeleton, trying to hold my breath, trying not think about what I was actually scrubbing at. He was screaming like an animal, screaming like I was torturing him. When it was all over I laid him back down on the grass mat all decked out in a new sweat suite, trimmed his finger nails, cleaned out his ears. And then right then and there he had diarrhea again all over the place. I talked to some of my neighbors and elders. “You know it’s his karma and it’s sad.” “He’s going to die soon but he will be born again into a new life and it will be better than this one.” "His mother's gone, his father's gone, now it's his time to go." “Even if you give him medicine or treatment how much better can you really make his life?” It made me second guess everything I was doing. I started thinking about life and belief systems. How would the village handle this if I wasn’t here? Should I not be interfering? Should I just leave him there to die? Is this really just his karma or is it ours to help him? “Yah but what if he was your son? What is he was your own brother? Would that change what you would do for him?” They didn’t seem to have an answer. He asks for food and water. Everyone pitches in and gives it to him. Some seem to think it is the government’s responsibility. “Yah the government, we’re all upset with the government! What else is new?” I wanted to say. “But isn’t it our job too? Isn’t this our job as fellow human beings? Aren’t we the government too here?” And is it really better for him to die? Will he really be at peace or will it just make our lives more peaceful not to have to see him and feel all that pity? I feel really alone. I feel sad. I feel angry. It’s not a problem money can solve. Money or no money, when it comes down to it, no one wants to clean up his feces. So now he’s just sitting outside on the front porch on a grass mat in the sun. Somebody please tell me what to do. Where do I put him? I remembered yesterday how once in an interview this woman asked me something like, “But don’t you ever feel like you're missing out? Like, wouldn’t you rather be off in college having jello shots or something?" I laughed and didn’t have an answer at the time but I do now. Yes Vickie, there are some days when I would rather not be here. There are some days when I would rather be cramming for an exam in the library or with my friends from home or working in a grocery store or doing anything else! I don't know about the jello shots part, but the world can be a very very sad place with lots of suffering and there are days when I would much rather just look the other way. --------------------------------------------------------------------- I am weeping over this little boy. He and Cody are so similar. My heart is broken. Thank you for reading about him and if you feel inclined, please keep him in prayer. Shawna
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