This is a short story about our beloved son, Jacob Isaiah Chamberlain-Carrasco.
He was born on February 14, 2003 to us, Berdette and Frank Carrasco. We waited for many years for our first child together. He was a quiet child who did very little the first six months of his life. We grew suspicious of his failure to meet milestones that children around him were reaching. We took him to a doctor when he was about eight months old who diagnosed him with one of many diagnoses to come. We were told that he had suffered from anoxic encephalitis, probably in utero. This led him to having spastic quadriplegia, cerebral palsy and visual impairment.
At the moment that you realize your child is not the child you had dreamed about, you begin to mourn the loss of that child. So, we changed our expectations of what was to come for Jacob, still thinking that it wasn’t really that bad. With the right treatment and therapies our child would be as “typical” as he could possibly be. We continued to go to 2-3 doctor appointments and 2-4 therapies a week leaving us with little time for fun and leisure as a family.
Jacob grew into a sweet three-year-old. He had endured multiple hospital stays, painful procedures and near-death experiences. My husband and I came to the very difficult conclusion that no matter how many procedures he endured, how many painful therapies he went through, our son would still have the same outcome: his passing. It was then we decided to give him the best quality life we could, and stop focusing on the quantity. The term for that is “palliative care”.
We began researching what we could do for a severely handicapped child with a terminal pulmonary diagnosis. We looked for other parents who had made the same choice and with whom we could share. Daycare facilities that were familiar with Jacob’s terminal diagnosis were concerned that he might die on their “watch” and they declined to care for him. So we continued to look for some place we could take him so he could just enjoy the day, play with other kids, and listen to other sounds. Exploring the internet around this time, we came across Ryan House! We were so excited! But, our disappointment was almost immediate when we read that it was a project in development. It was then we had an overwhelming sense that we were not alone.
There are other children and parents out there who are like us! We were amazed and impressed after meeting the people who are involved in this project and with their determination to make sure that children and families never have to face what we faced alone. Even though our son will never experience the benefit of a palliative care center like Ryan House, we are comforted that soon there will be a place for children like Jacob and for parents like us. Just because these special children will have shortened lives, they deserve to live each day like any other child, regardless of what happens tomorrow.
– Berdette & Frank Carrasco, in memory of Jacob, February 14, 2003 – July 28, 2007