As a child, I would sit down in our basement and play with my three foot tall Barbie house that held my dream family. Don’t get me wrong, I had a lovely middle class upbringing, so I was not hiding from the evil devils of my life. With the exception of a few instances of bullying, I had a great childhood with loving, caring parents. When I play with my Barbie house, I wanted a handsome husband, with a good job and a good education to support our family with me, his lovely wife and teacher. We would have two or three children and live in a house that we were paying a mortgage on until the kids went to college. Our children would have lovely clothes and extracurricular activities. Once a week, we would have a maid to the house. Our family would go to church and contribute to society in meaningful ways and teach our children to do the same. The worst thing I could envision was the death of my parents or other close family members. Thank God this has not happened to me, as I have no idea how I would function without the love and support of my family and those who are truly close to my husband and me, who know the story behind just seeing our family in public.
April 20th was a day which will go down in infamy for me. Before the joyful event of his birth, my husband and I had a long path to that date. I became pregnant with Ryan about nine months after our previous son was born. I had a cancer scare with this pregnancy. I spiked a fever over 105 degrees and was rushed to the hospital, where I was diagnosed with the flu. There was no treatment for a pregnant woman suffering from the flu. My doctor had recommended against a flu shot during the pregnancy; thus, I got the flu for the first time in over a decade. Finally, the day before actually giving birth, I knew something was not quite right and I was told that I was having contraction and I was not dilated or effaced.
My husband and I went home with me saying in the car that something was not right. He encouraged me to grab a pizza (my pregnancy favorite) and to just chill out watching movies. We just relaxed and at some point, I fell into a fitful sleep. After getting up the next morning, I walked into our family in order cross our house to the kitchen when I was literally knocked off my feet by a searing pain that tore through my left side. Sitting on the couch that caught me, I yelled for my husband, looked at him, and said those fateful words, “It’s time.” He called the doctor, warmed the car, and called the babysitter (we had a sixteen month old running around while our other child was on spring break, returning that day). The same doctor was on duty, so we went back to the hospital once the family was settled. I guess my face and demeanor showed my pain because they checked me right away as I was 6.5 cm dilated.
I requested my epidural right away and was told I might not be able to get it as my labor was occurring too quickly. After being settled in the room, a nurse rushed in, asked if I moved, and placed an oxygen mask over my face without explanation. My husband and I knew that this baby was arriving five weeks early, but what else could be wrong. In a blink of an eye, it was time to push. After push number two, I was to stop pushing and hold still, because the baby had the cord wrapped around his neck. “Call a CODE BLUE!” The nurse pushed a button on the wall and we entered a hectic mode which seemed to slow down the rotation of the Earth. The cord was carefully removed, but the baby was not breathing. He was placed in the warmer, where he was given oxygen and then … it sounded like a kitten mewing. The team was called off and he went to the regular nursery to get cleaned up. My husband and I breathed a sigh of relief. Ryan was going to be okay.
When he was returned to us, we noticed that he did not fed with the same enthusiasm as our older children. This problem continued when we got home. We also noticed that Ryan cried all the time and never seemed to be comfortable. When we loaded him into the car, Ryan would cry every second that he was in the car, as well as most of the time when he in the cart at a store. My husband and I stopped going out of the house except when necessary because of our son’s severe reaction. We shared our concerns with our pediatrician who stated that every child is different in growth and development. Ryan protested food by tightly seizing every muscle in his body; this further convinced us that we were right. We had to find out what this was.
In addition, Ryan’s eyes were not tracking correctly, so off we went to the ophthalmologist. This doctor did not have pediatric experience, but said that based on what he saw; there was a strong possibility of mental retardation. We knew Ryan did not seem strong when it came to his muscles, but now there was something wrong with his brain? Please, God, no. The ophthalmologist told us he had a friend from school that treated children; unfortunately, she practiced two counties away. We took her name and number.
In the meantime, I had quit teaching in order to find out what was wrong with Ryan. My husband worked for the local electrician union, but was unemployed. The stress of taking caring for our children, including Ryan, who was not making progress, and being home all day was grating. Tom applied to become an active duty serviceman so that we could have access to health care, free housing, and employment. In order to pay our rent, we withdrew money from our retirement accounts; Tom took a loan against his and I drained mine. I was writing at night and on weekends in order to bring in some money, and babysitting during the day to add income to pay for basic necessities, such as formula.
By four months old, Ryan had merely been labeled “failure to thrive “by his pediatrician who finally admitted there was something wrong, but nothing too concerning. We made an appointment with the pediatric ophthalmologist, which required a six week waiting period. Ryan’s muscles were weak, so we looked up a pediatric orthopedist. The closest doctor who accepted our insurance was over one hundred miles away. Again, there was a long waiting period until his appointment. We also suspected that a neurologist’s opinion could be useful, as well. I had epilepsy as a child and my neurologist was still practicing. I wanted Ryan to see him so badly because he had a high success rate, and children were typically seizure-free after treatment by him. But his $350 office visit charge meant that we could not afford him. We found the name of another neurologist in the area; yet, another period of time to wait for more answers.