My pregnancy was a rough one. Over the course of my pregnancy, I was admitted to the hospital 22 times for different illnesses. I would be stabilized then sent home. Normally, my problems were related to pain. When I was eight months pregnant, a large motorcycle slammed into my husband’s car totalling it. I was taken to the hospital and treated for whiplash.
Because of my advanced pregnancy, I was placed on bedrest. It was then I learned fear because I was not certain that my son would be born healthy. I hurt all the time and I would sleep sitting up on the couch because it hurt too much to lie down. Doctors advice was to take tylenol and soak in the tub. What an idea soaking in the tub was! I could barely get up off the couch, never mind sit in a warm bath and try to get out of the water.
My son was born July 22, 2002 and he was perfect to me. However, he was having trouble breathing so doctors whisked him away to give him much needed assistance. He was placed under a heat lamp to raise his body temperature because it was low. We spent two days in the hospital before we got to come home.
The first two months were uneventful. We spent many sleepless nights like most new parents and learned to take naps when our son took naps. I was still in a lot of pain, so I signed up for government assistance while I was recovering.
When my son was two months old, I learned panic and perseverance. I walked over to look at my beautiful son laying in his bassinet and I watched in horror as his eyes rolled into the back of his head. We rushed him to the hospital where they admitted him and kept him a few days for observation, then sent him home.
We did not get to stay home long before the eye rolling spells started again. I knew deep in my heart that my son had epilepsy. I did not want to believe it. I wanted to believe that he was perfect. It all felt like a bad dream, but I did what I knew I had to do. When my son stiffened and his eyes began to roll to the back of his head, we grabbed him and rushed back to the hospital.
The doctors at the local hospital suspected epilepsy, but the doctor that had seen our son at the children’s hospital had blown us off saying “Babies will roll their eyes.” She would not listen to us when we said something was wrong. Fortunately, fate was on our side. Christopher began to have a seizure while we were at the local hospital. This time, the doctor and three nurses saw what was going on. They called the children’s hospital and told them that our son needed admitted up there. At first, the children’s hospital said we were just new and anxious parents and that nothing was wrong, but the local doctors talked to the neurologist on call about what they observed and our son was transported back to the children’s hospital.
Just a few days later, we were waking up early in the morning to talk to the doctor when we heard the words that would change our lives forever. “I am sorry to inform you that your son has epilepsy.” We already knew deep down and we knew we would do anything to help our baby.
Not long after that, we learned of a program called Help Me Grow. This program was instrumental in getting us through the many bumps and bruises that goes with having a child with epilepsy. They told us what to watch for and helped us get diagnoses for our son’s illnesses. One critical piece of the puzzle fell into place. Our baby had dysphagia, a swallowing disorder where the pharynx does not close fast enough and fluid aspirates into the lungs. He was given a special thickening agent that had to be used with his formula. This made his baby formula the consistency of pudding. It was then that I learned innovation because the formula would not come out of his bottle so I had to buy nipples from the dollar tree and cut a space out in the top of them.
As my son grew and changed, we enrolled him in some special programs to help with delays he was facing. He went to a school that had therapies on site from the time he was three years old until he was seven years old. He had physical therapy, speech therapy, and occupational therapy. We watched as he took baby steps in a way because each step that he took was critical to his development.
Now at the age of eight, our son is in a special classsroom called intervention. We see specialists regularly for him. We have been told that he functions at the level of a kindergartener by psychologists and that our son will probably never live by himself, but we don’t believe it. We have learned the most of all to have faith in our child and faith in ourselves. Our son is a special child in every sense of the word, but I would not have it any other way. I love him with all of my heart.