Apparently, opening a bank account requires police intervention. “It would have been quicker to marry Roza” I thought rather uncharitably as yet another bank representative gave us a host of obscure forms we needed to obtain from someone OTHER than the bank that were needed for me to open a checking account that only needed a minimum balance of $1.00. The latest had us puttering off to a local police station on Roza’s motto. Both of us a little cranky from the heat and the hierarchy.

The 1st local police station location was so far off the beaten path, it wasn’t reassuring in terms of response time should someone need something more pressing than permission to open a bank account. The first fellow we found inside was napping on a hammock and the second was playing Angry Birds on his smartphone behind the desk. Slow day at the office. And an unhelpful day. Angry Birds informed us he had NO idea what the bank was talking about. That long ago there may have been a form that resembled what we are looking for but he had no idea about it and suggested we go back to the bank or perhaps try another police station much farther away. I was feeling a little Angry Bird myself but figured hurtling myself at him with the intention of exploding was not culturally respectful.

Numerous phone calls and inquiries later, which included the revelation that another police station we were trying to reach had no one who worked past 3pm, Roza and I went back to the bank empty handed with Roza determined to talk the bank manager into opening my $1 account through sheer will. Then another manager announced it would probably be okay if instead of police permission (and the $100 fee for the non existent form), we simply got the hotel that I stay at each time I am in Cambodia to write a letter saying I was a good customer. I let Roza do the grumbling for both of us in colorful Khmer.

With Safe Haven breaking away from Community First and becoming our own stand alone NGO, our work in the field and at the hospitals with the kids this trip has also been peppered with a great deal of paperwork and administrative details I need to attend. So in between sick kids and home visits, Roza and I have been running all over town laying the groundwork for Safe Haven’s independence. It’s been a very busy couple of weeks.

However, working with the kids takes priority over everything and I love reconnecting with the families and Safe Haven kids while I am here and seeing the amazing progress they have made. One such kid is 8 year old Kea, who gives me a huge smile when Roza and I pull up at her house. She runs over and jumps up into my arms. That in itself is a massive achievement. Kea has spent the better part of a year enduring painful surgeries for her bilateral club feet as well as intensive physical therapy to help strengthen her legs. The fact that she can run anywhere is cause for celebration. Her parents are off to the rice field, so she has been patiently waiting for us to arrive to take her to Handicap International where she will meet with my physiotherapist Pheakdey and get the braces on her legs adjusted. Kea is absolutely filthy from head to toe. She prefers to wear one outfit day and night until it is pretty much falling off her body in disrepair. We start to head back to the city but have an unexpected emergency stop: Lo Lith’s mother calls. She ran out of his heart medication. Four days ago. He needs to go to hospital. We swing by his house. He is looking better than he normally does and thankfully doesn’t have that bluish tint all over him we normally see. Still, Roza gently reminds his mother NOT to wait until after the meds run out to call us if she needs help. Regardless of the destination being the hospital, which for Lith usually means a lot of poking and prodding, he is very excited. Lith just loves our pick up truck and riding in it is one of his favorite things. He is already dragging himself along using his one good arm (his legs do not work) towards to truck so Roza picks him up and puts him in the back. All his brothers pile in for good measure, along with his mom and we are ready to go. It never ceases to amaze me how easily my thinking changes once I get to Cambodia from my ordinary Western sensibilities. We are very grateful to have the pick up. Before, it wasn’t unusual for Lith to ride to hospital with his entire family on a motto with no helmets. But let me just say that if I tossed a disabled child with a severe heart condition into the back of a pick up truck in the USA to drive him around I’d be arrested for child endangerment. (I should clarify we didn’t toss Lith into the truck).

Kea wants to ride in the cab with me which is unusual because practically every Cambodian kid I know gets carsick. (one reason they all like to ride in the back). She gamely makes it halfway back to the city before climbing into my lap so she can hang her head out of the window. We stop at the Ankor Hospital For Children first to drop off Lith and his family before finally arriving at Handicap International for Kea’s appointment, which we are late for. But we need not have worried. The power has been out all morning so they can’t do anything anyway, so Kea will simply stay here until the power comes back on. Pheakdey takes Kea to play on some of the therapy equipment and Roza and I head to our office which is also sans power. Thankfully, the power outage is a short one and the air conditioner blessedly kicks on. I caress the air conditioner remote and whisper sweet nothings of love at it.

By the end of the day, Kea’s braces are properly fitted and Lith has another month’s supply of his meds and everyone is ready for the return trip back to their respective villages. I’m still without a bank account but we’ll try to tackle the problem again tomorrow. At the end of the day, Kea is walking and Lith is breathing easier. That is what matters most.

The burlap bag landed with a meaty thump into the back of the Safe Haven pickup truck and began convulsing. Roza had just paid 15,000 Riel and 10 fish hooks for a sack full of bullfrogs. He untied the sack and yanked out one hearty fellow to inspect the merchandise while Jess regaled me with tales of frogs on a stick at market for snacks that are skinned, but still twitching. Roza proclaimed the frog “nice and full of eggs” before stuffing the unfortunate amphibian back inside the bag and tying it shut for our bumpy ride to Chammbeak’s house. I stared dubiously at the sack. We were going to be out in Sen Sok all day visiting Safe Haven kids and the temperature was already climbing well above the requirements to pre heat an oven for roasted frog. Roza assured me it was okay, that even if some of the frogs died, they would still be fresh once we got home later that afternoon. I suspect my idea of “fresh” and Roza’s are two completely different things.

Sen Sok province is about an hour and a half north of Siem Reap province. We have five Safe Haven kids located in more remote villages in this area, which is difficult to reach, even with the truck. In particular, during rainy season, when the roads tend to wash away. Rainy season, which is suppose to be at least a month off, didn’t get the memo from Mother Earth and we’ve had some torrential downpours the last few days. It makes getting to Chammbeak’s house somewhat of a challenge. Roza idles a few moments in front of a washed out section with particular deep ruts and I begin to mentally picture myself trying to push us out of it. Roza babies the pick up slowly through and all the inhabitants of the truck (with the exception of the frogs) cheer our success.

Our first stop of the day had been little Boreak’s house. Boreak is one of our tougher cases. Autistic and suffering from seizures, he cannot self care and his condition is a huge stress on his mother. His seizures have been difficult to get under control. The current medication we are trying has not stopped them completely but he is on the maximum dosage allowed for his size. The side effects are taking a toll. His mother lets us know he is constantly fatigued and he has lost weight from a disinterest in food. Jess notes his heart rate and blood pressure are also slow and low. Boreak is due to come to the hospital with us on Friday so the timing could not be better. A new medication may be needed. His mother has some other concerns on her mind. She tells us her heart is not well. She has bouts where it races very fast and she cannot catch her breath and it scares her. She went to a local clinic that told her that her heart is “getting bigger.” They told her she must takes pills they gave her to live. Jess is suspicious since they don’t really have any diagnostic equipment or expertise and asks to see the pills. They are unlabeled and came with no instructions. They also look suspiciously like aspirin and a multi vitamin and the clinic is charging this woman $75 a month for them, which she cannot afford. Jess checks her vitals which seem normal and strong and we ask her when the heart racing first started. She tells us it began when her son got sick and happens when she worries about him. It also now happens when she is low on money and cannot afford the ‘heart’ medicine. It all points towards anxiety attacks brought on by the worry about her son but we don’t want to take any chances until we investigate further. Jess tells her to continue taking her meds but asks for a sample of each pill so she can suss out what she may be taking. Roza spends some time reassuring her and encouraging her to try and not be stressed but that is a tall order when you have a disabled son, have been told you have heart condition and no money for medications and have to deal with the fifty neighbors that have shown up and invited themselves inside to sit and listen to everything we are saying.

Next up was 7 year old Veng Von and 4 year old Phanchai, whose families are both neighbors and the purveyors of frogs for all your dining needs. As with Boreak’s house, it apparently takes a village to have a visit so in no time at all, there are about a dozen kids and random adults all hanging out at Veng Von’s where there is a cement red table under a small overhang. Veng is wearing his leg brace after surgery to correct his backwards knee last fall and is walking with significantly less difficulty. Phanchai has not had any seizures for at least 6 months. Both families are doing rather well and the kids are healthy so this is more of a social visit to let the families know we are there if they need us.

It’s some distance between houses in the various villages in Sen Sok and Roza helps us pass the time with his own version of Food Network, Khmer style. Having fully educated me on which frogs have tasty eggs and which ones will kill you, he points out large fields with rows of strange contraptions consisting of lights with thin electrified wire running between them and a small trench of water situated underneath. Apparently, this is cricket harvesting equipment. The lamps attracts said cricket, who hops towards the light and promptly electrocutes himself on the wire. The cricket then falls into the vat of salted water where they float until being scooped out the next morning, all nicely brined and ready for market. Fried cricket is actually kinda tasty and now I know where that salty infusion comes from. I do like learning new things…

Our last stop of the day is at 10 year old Ly Sa’s house. She is one of our newest Safe Haven kids. Radically undersized and malnourished, she looks about 4 years old and was only 22 pounds when we first took her into the program. She has been in and out of the hospital as my Safe Haven team has been working to help her gain weight. She is on a special diet to bolster her health which includes a soy liquid supplement that we are providing the family. We’ve brought a three month supply with us today and Jess is VERY pleased to see she has gained several pounds since her last weigh in. Although she is still very small, she is looking healthy and no longer critical. She also suffers from some type of chromosomal abnormality but we are not sure exactly what is wrong with her. She does not communicate in words and spends much of her time swinging and napping in a hammock. She is prone to lots of laughter and a sweet smile if you swing her or tickle her belly. Her older sister does both and Ly Sa shrieks with delight.

Word has spread that we are there and two children are brought to us for assistance. The first is a 17 month old girl named Min. Her issue becomes readily apparent. Every 5-7 seconds, her head jerks backwards involuntarily. She cannot sit up or stand on her own, which is not a surprise given the violent, repetitive motion of her head. Localized seizure? Neuromuscular tic? Whatever it is, it dominates every waking minute of both the child’s life and her mother’s life. They live nearly 4 hours away but have come to Sen Sok to see us. We agree to take her to the hospital with us on Friday but unless the parents commit to traveling that great distance every time she has a medical appointment, there is not much we can promise them . She lives too far away for us to be able to do our normal at home interventions. The second boy is 12. His parents are in Thailand looking for work and he and his older brother are on their own. His hands and feet have erupted in red, swollen, scabbed and infected bumps. The skin is also flaking like a snake skin and has a strange white cast to it. Jess takes photos in the hopes we can share it with other health care professionals and see if anyone has any insight. In the meanwhile, we set him up with some antibiotic topical cream and hope for the best.

The clouds are rolling in so we hustle to the truck in hopes of beating the rain back to Siem Reap. Roza gets turned around on all the pitted side roads and we are momentarily paralyzed with indecision at a fork in the road wondering which way we are suppose to go. We opt for the road that actually vaguely resembles one. It’s been a long day, both for us and the frogs in the sack. Roza peeks in to check on their welfare and the results are less than promising. Many are not so fresh anymore. Lacking any cricket based salty preserves and facing another hour on the road to get back into Siem Reap, Roza finally concedes that he might have to alter his cuisine preparations and simply deep fry the suckers to cover up any shortcomings in the flavor after 6 hours in a burlap sack in the sun. Jess whispers reassurances that she will be serving me pasta for dinner at her house tonight. With a generous glass (or two) of wine.

Bon Appetite.

In the last two years since I started Safe Haven, we’ve been getting by with a shoestring budget, a lot of hard work, a wing, a prayer and occasionally, a bit of good old fashion swearing in both Khmer and English. A friend recently asked me over dinner what sustains my passion and at first all I could do was grin as my mind flashed over a thousands things that often are hard to put into words.

The easy explanation is those stories of kids who have had life altering surgical or medical interventions that have transformed their bodies or saved their lives. Those stories are the ones people love to read about, see pictures of on Face Book and hold up as a measure of Safe Haven’s success. To see children now able to now walk, hear, see or speak, those have been moments that have sustained us. Stories with unhappy beginnings that have had happy endings.

Early Wednesday morning, my staff and I sat around a conference table at Ankor Hospital For Children along with several doctors, nurses and social workers to discuss a different type of ending. How to handle palliative care in the village and help support one of our families who will soon be facing the death of their child.

Nearly two years ago, my project manager Roza and I met with a family who had a son they wanted to have in our Safe Haven program. During my first visit with Chheat, he suffered a grand mal seizure while his worried mother wiped the drool from his mouth and changed his clothes after he soiled himself. He was exhausted and soon drifted off to sleep in her arms. The original story we got from his parents was that when he was 6 years old, he tripped, fell down and was trampled by a water buffalo and it was after that accident that he began to have seizures. Building a health care history in Cambodia is often like a game of telephone. What you hear is almost always not what originally happened. There is actually a very good chance Chheat was run over by a water buffalo, but as we have come to know in the ensuing years since he became part of our Safe Haven family, that is not what is wrong with him. The truth is far more complex, devastating and still partially out of our reach.

What we know now is this: At 6 years old, Chheat started to have trouble walking. He began to lose control of his body and became wracked with seizures. His speech started to decline. A year later, despite the fact that we have his seizures under control, his decline has been rapid. He now cannot see or hear. He does not show any signs of ability to meaningfully interact with his family. Three weeks ago, he began to have trouble swallowing. Lacking any sophisticated testing, we can only hypothesize what is actually wrong with him. Perhaps some type of genetic syndrome passed along by recessive genes carried by both his parents. We will never know what is wrong with Chheat and even if we did, the reality is that would not change what could be done for him here. We only know what it is doing to his body and mind. He is now 10 years old. Blind and deaf, he sits in his wheelchair unaware of his surroundings and we are left to wrestle with questions of his care and the likelihood he will soon be unable to eat.

Six months ago, Chheat’s 6 –year old little brother Chhitt started having trouble walking. Three months ago, he began falling down. Today, his speech was limited to a few words. There was no water buffalo.

One of those words he says is Laan, the Khmer word for car. Chhitt loves our Safe Haven truck and has a big grin on his face when Roza, Fiona, Jess and I pull up for a check up on the family. We all pile out. Chheat is in his wheelchair in the front yard. His mother greets us warmly but Chhitt only has eyes for the truck. He grins up at me and points with a bent arm toward to truck. “Laan, Laan!” I hold his hands and support him as we walk slowly over to let him sit in the back.

There is a third brother Chhai, who is only 4 but an absolute terror of mischief and energy. On a previous visit, Jess saw him pick up a kitten and fling it across the yard before dashing off to find some other type of trouble. Chhai leaps into Roza’s arms laughing hysterically and then races off to pinch a neighbor kid. He is healthy and full of life. Something both Chheat and Chhitt’s parents remember about their older two boys before whatever was buried deep in their genetic code sprang to life with devastating force.

Jess and Fiona sit with Chheat for a basic health check up. His parents are worried. They know he is getting worse. His mother tells Roza she is worried he is going to die and Chhitt has declined at such a rapid rate in the last few months, there is a very good chance there will soon be two wheelchairs in the front yard. Before the conversation gets very far, the sky opens up and we are caught in a downpour. Everyone hustles to get inside the hut. Roza and I first secure the medical bags and generator in the back of the truck from the wind and rain, so I am already soaked by the time I crawl inside. Roza is even more hesitant to follow. He is sure he is going to break the rickety floor of the hut with his big frame. It is not an unreasonable thought. The cracked board floor is already creaking precariously under the weight of the three additional westerns but we are grateful for the hospitality.

Chheat’s father, as soon as the rain started, carefully took his unresponsive, disabled son from his wheelchair, wrapped him in a blanket and held him in his arms as we sat in the hut. In a place where children like Chheat are often considered unlucky or abandoned, this boy, regardless of whether he is able to respond, knows the love of his father’s touch. They have done the absolute best they could in a very unforgiving situation with little resources. God willing, their youngest will escape the fate of his brothers when he also turns six. Both of their older sons will die young. The eldest sometime in the near future.

Helping this family through that transition is now our goal. Finding ways to support them emotionally and with dignity, while making sure Chheat is as comfortable as possible is a whole new story we are writing with an ending that cannot be escaped, but the importance of providing this to them is in many ways of greater value than anything else we may do. That their struggle to care for their disabled sons in the midst of their extreme poverty with such dedication and devotion has not gone unnoticed. The lives of their sons matter and when the time comes, they will not have gone through this alone.

The rain lets up enough for us to scramble out of the hut and head towards our truck. Chheat and Chhitt’s parents thank us for coming and we assure them we will see them next week at the hospital for their next appointment.

They wave, smile and turn back to their three boys and their lives, having made it through another day.

Success.

Fiona has been keeping me up nights.

Well, Fiona’s jetlag if I must be completely accurate. Actually, both of our internal clocks are completely out of whack and we are reacting in vastly different ways. I’m waking up totally disoriented and Fiona’s waking up with a serious case of munchies and ready to snack on whatever is handy. The first night I woke up at 2:40am convinced we had slept right through the next day. Sadly, I’d actually only been asleep for about 4 hours and my disorientation was due in part to an incorrectly programed cell phone (damn 24 hour clock feature ) and the fact that all the lights were on while Fee was happily sampling the complementary tray of cookies and sticky rice treats housekeeping had left. While my befuddled brain tried to remember who, what and where I was, she offered up half a chocolate brownie bite and asked if I could remember what day it was.

The 2nd night Fiona tried to not rouse me when she found herself wide awake and hungry again at 2:30 am. She kindly snuck outside to the patio couch but a frisky cricket drove her back inside again where she managed to rustle up a bag of chips which she was happily munching while reading The Hunger Games when my eyes cracked open. Desperate to try and kick my irregular sleep habits, I staggered over to my bag , snatched up a bottle of Melatonin and took a big old swig. Note to self: never overdose on Melatonin at 3am after a big late night scotch and very little food while suffering from jetlag. I spent the next two hours wracked with gut cramps. Luckily, I happened to have a nurse with a great bedside manner sharing the same room.

Adapting to the Cambodian time zone hasn’t been the only difficult transition this trip. Safe Haven is in the midst of some fairly big changes and the growing pains are difficult. For the past two years, Safe Haven has been a part of CFI or Community First Initiatives, a 501c3 not for profit program in Cambodia that focuses on building self sustaining villages through programs in the areas of clean water, job training, education, health and agriculture. CFI was founded by my dear friend John Whaley. Over dinner one night in 2009, we were discussing the great need to get Safe Haven up and running because there was a very real possibility that many of the children I wanted to help would not live long enough for me to go through the long process of becoming my own independent non profit program. It was a point that was painfully brought home by the death of my Cambodian son Sum Namg. John graciously offered to bring Safe Haven into the CFI fold as part of their health care initiative so we could begin working right away and not lose any precious time. Thanks to his generosity, we were able to implement the Safe Haven Outreach program in October of 2010. Over the course of our first year we experienced many highs and lows. We saw the lives of children who had never had access to basic health care or surgical intervention transformed. We also witnessed the dignity of another family who had to bury their child too young when he died from complications related to Cerebral Palsy and felt the deep gratitude of his mother when Roza, my project manager, visited a month after his death to let her know he was important to us and give her a photo of her son.

Without John shepherding us through our formative year under the umbrella of CFI, Safe Haven would not have been able to grow into the success it is today and it has become a program that needs to leave the nest and strike out on its own. So with deep affection and a lot of gratitude, I sat down with John a few months ago as we came to the conclusion that Safe Haven was ready to become its own full fledged non profit. For me, it has been as daunting as stepping off a cliff. Having the safety net of CFI has made it possible to get to where I am and going to the next level on my own gives me heart palpitations and has me reaching for a large glass of whiskey. Prior to arriving in Cambodia on this trip, I received my California state non profit status for Safe Haven and submitted the final paperwork for my federal status.

Normally, when I get to Cambodia I hit the ground running with field work out in the villages and in the hospital. But these first couple of days have been filled with a lot of practical administrative type stuff. Not as glamorous as traversing sketchy bridges and dodging water buffalo on moto bikes out in the countryside, but equally as necessary as we begin transitioning towards independence.

My friend Chitra was gracious enough to rent me two rooms on the 2nd floor of a building she recently bought so we could set up a temporary office. To say we are cozy is an understatement. Roza has masterfully managed to fit three desks into the first room but Pheakdey, my physical therapist, practically needs to be shoe horned into her space. Luckily, she weighs about 90 pounds and can easily be shot putted into place if needed. Jess (my nurse) and I are sharing one desk as neither of us is there full time.

We are using the 2nd room as a conference area/storage space/kitchen/medical room. On the bright side, it is certainly going to encourage all of us to spend more time in the field with the kids. Given the choice between risking Tuberculosis, Dengue Fever, Trauma by Moto Bike or being in the claustrophobic office, I’ll take the former afflictions in a heartbeat. Actually, between Fiona, Roza and I, we’ve actually covered all three already.

But this morning there was no escape. My intrepid staff and I crammed ourselves into the conference room and begin to go through our roster of kids to determine who needed to be scheduled for surgery, who was in need of medical intervention, review speech and/or physical therapy progress reports and decide which children were ready to be released from our Safe Haven program. Some of the reasons for releasing a child are difficult. Several of our kids who could really use continued care have left the country. With no way to feed their families and support themselves in the villages, many of the parents have opted to try their luck crossing the border into Thailand. There is little we can do except let them know if they return, they can call us anytime. But chances are we will not hear from them again. Sweet little 5 year old Mesa, who suffers from CP, is one of the children who is no longer in Cambodia. Early intervention with a child like Mesa is key, in particular with physical therapy, which can help her develop the ability to gain strength in her weaken torso and limbs. We had high hopes for her to be able to eventually learn to use a walker. She had recently started to crawl and pull herself up into a standing position. We can only hope her parents will seek out continued care for her in Thailand.

On the other end of the spectrum is 18 year old Tola. We simply cannot do anything more to help him. Tola is an extreme example of a child who never received any medical intervention and his deformed body continued to grow and twist until he was permanently in a hunched up position. Over the last year, we’ve worked with Tola and his parents on basic physical therapy techniques they could do to relieve some of his daily pain. But our limited capabilities and his extreme condition left us with very few options. Early on we consulted with several surgeons but received the same hopeless answer. Tola, now an adult at 18, is a very sweet young man. The reality is, there is simply nothing we can do for him.

Not all of the assessments for children leaving the program are grim. Most are massive success stories. There is 10 year old Soth, blind from birth, who now sees due to surgery on his eyes. He just started school for the 1st time. 8 year old Kea, after enduring almost a year of surgery and rehab on her clubbed feet, is also in school and walking flat footed for the first time in her life. 5 year old Vannack can now hear. 7 year old Von has recovered from his orthopedic surgery on his backwards knee and is now walking normally with a leg brace. Sona and Raty, two kids with Down Syndrome who previously spoke very little have flourished with speech therapy. Like Safe Haven, they are ready to take new steps towards independence and a brand new future.

These are the transitions to celebrate.

Nazi Propaganda poster to show support of the T4 program under which thousands of mentally and physically disabled men, women and children were sterilized or euthanized. The translation under the photo of the children shown says "Stupid".