Tonight we will go to the home of John Ray and Rufa Mae for Rufa's birthday party. We will get a chance to spend time with this amazing family and to celebrate with them this special day.
John Ray and Rufa Mae both have Osteogenesis Imperfecta, more commonly known as brittle bone disease. They were born with this affliction. Neither can walk. Both have very brittle bones that can easily fracture, even with minimal contact. Even a hard cough or sneeze could conceivably cause one of their bones to break. They have to be pushed in wheelchairs to get to school, and need help in getting to the bathroom and getting dressed. Although they are both able to attend our Children of Hope School and are bright and dearly loved by everyone they meet, they are dependent on their family members for almost everything. Most of all, they rely on their mom, Alice.
Alice is one of the most amazing people I've ever met. She is totally dedicated to
her kids, and this commitment is tested every day. She is their defender, comforter and, to a large extend, provider. She sees that the other kids don't get too close, as even a small bump could be disasterous. She brings them to the Shelter to catch a short ride to the school. This involves carrying them, one by one, down the stairs from their home. By this time of the morning, she has already been up for several hours, cooking food. Alice not only feeds her own family, she prepares meals for sale to our teachers and some of the workers on our construction site. She has to go to the market at night to purchase this food, so Alice is usually on the go from dawn until after dark. Her husband is a farmer, and sells fruits and vegetables in the large market in Cebu City. He has to travel back and forth to their land in the mountains. So most of the care of their two special needs children is on Alice's shoulders. And she does it with so much love.
Sometimes I think about Alice's life, and how there is almost no part in it that isn't either work or the care of her children. She has no hobbies, no personal time and no opportunities to "crash." Every day, all day, she sees to the needs of her kids. And these needs will never change. They will need her for their entire lives. She doesn't have the luxury to feel sorry for herself or for her kids. She has to cook, get her kids' clothes ready and see that they are comfortable and safe. And she is the primary source of encouragement for them when they hurt.
I remember the first time we went to the house of Rufa Mae and John Ray. At the time, before we built them a home near the Shelter, they were living in a small home belonging to their aunt in a hilly area outside of the city. I brought a bunch of the kids to see them and we brought some groceries and treats. I remember how Alice cried that day. She had probably come to the conclusion that her kids would never have friends who would come over, that they would never be the center of positive attention and would not have opportunities for friendship, interaction and the chance to go to school. She had seen her kids suffer so much and live such isolated lives, that seeing a troup of kids come in their small house with gifts and smiles and expressions of love was almost overwhelming.
Having John Ray and Rufa Mae in our school has been a great blessing for eveyone. Getting to know Alice has been an added blessing. She is the embodiment of the concept of selflessness.
John Ray and Rufa Mae both have Osteogenesis Imperfecta, more commonly known as brittle bone disease. They were born with this affliction. Neither can walk. Both have very brittle bones that can easily fracture, even with minimal contact. Even a hard cough or sneeze could conceivably cause one of their bones to break. They have to be pushed in wheelchairs to get to school, and need help in getting to the bathroom and getting dressed. Although they are both able to attend our Children of Hope School and are bright and dearly loved by everyone they meet, they are dependent on their family members for almost everything. Most of all, they rely on their mom, Alice.
Alice is one of the most amazing people I've ever met. She is totally dedicated to
her kids, and this commitment is tested every day. She is their defender, comforter and, to a large extend, provider. She sees that the other kids don't get too close, as even a small bump could be disasterous. She brings them to the Shelter to catch a short ride to the school. This involves carrying them, one by one, down the stairs from their home. By this time of the morning, she has already been up for several hours, cooking food. Alice not only feeds her own family, she prepares meals for sale to our teachers and some of the workers on our construction site. She has to go to the market at night to purchase this food, so Alice is usually on the go from dawn until after dark. Her husband is a farmer, and sells fruits and vegetables in the large market in Cebu City. He has to travel back and forth to their land in the mountains. So most of the care of their two special needs children is on Alice's shoulders. And she does it with so much love.Sometimes I think about Alice's life, and how there is almost no part in it that isn't either work or the care of her children. She has no hobbies, no personal time and no opportunities to "crash." Every day, all day, she sees to the needs of her kids. And these needs will never change. They will need her for their entire lives. She doesn't have the luxury to feel sorry for herself or for her kids. She has to cook, get her kids' clothes ready and see that they are comfortable and safe. And she is the primary source of encouragement for them when they hurt.
I remember the first time we went to the house of Rufa Mae and John Ray. At the time, before we built them a home near the Shelter, they were living in a small home belonging to their aunt in a hilly area outside of the city. I brought a bunch of the kids to see them and we brought some groceries and treats. I remember how Alice cried that day. She had probably come to the conclusion that her kids would never have friends who would come over, that they would never be the center of positive attention and would not have opportunities for friendship, interaction and the chance to go to school. She had seen her kids suffer so much and live such isolated lives, that seeing a troup of kids come in their small house with gifts and smiles and expressions of love was almost overwhelming.
Having John Ray and Rufa Mae in our school has been a great blessing for eveyone. Getting to know Alice has been an added blessing. She is the embodiment of the concept of selflessness.
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