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.