We had been married for two years when Sterling arrived early in the morning of August 8, 2004. We were expecting nothing less than the birth of a perfectly healthy baby boy. Everything with the pregnancy had been perfectly normal and we had no indication that something might be wrong. A few hours after Sterling was born, the doctor making rounds came into the room and told us something was “off” about Sterling, and they wanted to run some chromosome tests. You could have knocked us over with a feather. In an instant our carefree and comfortable emotions were stripped away and were replaced with bewilderment and fear.
The chromosome tests came back normal and, after the course of a few days, Sterling was released from the hospital into the care of his pediatrician. This is where our real journey began. He was quickly diagnosed with failure to thrive due to a poor suck reflex, resulting in a lack of weight gain. The first nine months of life were filled with doctor visits 3-4 times a week. Specialist after specialist, therapist after therapist, nutritionists, gastroenterologists, neurologists, and geneticists.
Emotionally, we were both drained and looking for a diagnosis that we knew we may never get. Our hunt for a diagnosis was never about finding out what was “wrong” with Sterling but rather to ensure that we, as parents, were providing him with the best care he needed. We didn’t want to miss something that might have made a difference had we caught it earlier.
Realizing that none of his many doctors were communicating, we came to the conclusion that the best option would be to have him admitted to Saint Francis Hospital where the doctors would be forced to come up with a plan of action. Sterling was 9 months old and barely weighed 12 pounds but none of the doctors seemed as concerned as we were. The first 48 hours were excruciating and filled with dozens of tests, wires, needles, machines, and ultimately a major surgery. The only real knowledge we gained from the medical community during these 10 days was that Sterling had suffered from severe acid reflux which led to a fundoplication and the placement of a feeding tube. It was at this point that we realized we were not in control of this unknown journey…. God was. It was also at this point that we switched from “diagnosis” mode to “care” mode. And over the next year and a half, care was what we did. We did the best we could with the resources that were available to us but we still felt that Sterling had so much potential that remained locked away inside him. This was when God handed us the most important key we have ever held in our hands….the Little Light House.
When we received the letter that the Little Light House had a spot reserved for Sterling we can honestly tell you without a sense of exaggeration that we know the feeling a parent must have when their child is accepted to an Ivy League school; we were ecstatic. When Sterling first arrived at the Little Light House he could barely walk, wasn’t feeding himself independently, and hadn’t spoken a word. With much pride, joy, and thankfulness, we can say that he is now running after his siblings, riding a tricycle with the neighborhood children, feeding himself at the table with the family, and has a 4 word vocabulary accompanied by limited sign language skills.
Even though Sterling cannot speak much, he certainly can communicate and through our observations of him, we can tell exactly what his opinion is of the Little Light House. When we pull off the highway and he realizes where he is going, Sterling gets a huge grin spanning across his face and when we ask if he is going to school we get a hearty head nod. When he sees the Little Light House logo on shirts he gives a big yell and tugs at the shirt and does his famous little “wiggle dance.”
Not only Sterling but we, as his parents, will be eternally grateful for the light that the teachers, volunteers, therapists, staff, and parents have provided, not only to Sterling, but to countless other families- past, present, and future. The most touching difference between the medical world and the faith-filled world of the Little Light House is hearing, “Bye Sterling, we love you…see you tomorrow” instead of hearing, “See you next week. Check with the nurse on your way out.”