My Grade School Years

I don't remember my first day of school, or all the friends I had, or everything that happened during my school years. There is definitely one thing that sticks out to me though....the very first time that I can remember being sick and in the hospital. I was 6 years old and was in 1st grade and I had some really bad belly pain. I had to be taken to the hospital because with Cystic Fibrosis, who knows what is happening. I don't remember all the tests they did to find out what it was or exactly how many days I was in, but what I do know is that it was a bowel obstruction and I was scared. At 6 years old, hearing the doctors say that if it didn't correct on it's own, I would need surgery, is horrible. I think that I remember this so vividly because I was in the hospital with all of this happening and it was the day before my birthday. My obstruction calmed down on it's own and I was released from the hospital on my birthday I believe. I remember getting home and one of my neighbors was waiting for me with some presents. She was probably in middle or high school at the time so she was older than me. I even remember what she gave me.....a Teddy Bear pin and a green necklace (both of which I no longer have). I would later be contected to this girl in another way....that will be a later blog.

After that school year, we moved. I started at a new school and had to make all new friends. I remember these people because I went to that school until I was in the 5th grade. All of my friends and teachers learned of my condition, either through me or my family, and no one really even cared.....as in they were still my friends even though I was sick. I wasn't that sick in elementary school although I still missed school from time to time because of having to go see Dr. Swender for my Cystic Fibrosis. When I was in Lansing School, I learned that a girl who I was friends with in Kindergarten was also in this school. Her name was Bekah and in the 3rd grade, we found each other again. We have been friends practically all of our lives and her family is my family.....I have probably spent as much time with them in my younger summer years as I did with my family. We were very close friends and right after our 5th grade year, I moved again.

I made new friends at Southern Cayuga school district and had to explain everything about my CF to people all over again. They didn't seem to mind either. To some people, I was known as the sick girl but that didn't bother me at all. I knew that I was sick and I just had to deal with it. To me, it was my normal. Somewhere around in this time, my doctor changed from Dr. Swender to Dr. Anbar and getting used to a new doctor was hard for me. I'm not saying that he was a mean doctor or anything like that, he was great. I just didn't have that special bond with him that I had with Dr. Swender. At some point around this time, I ended up in the hospital for a flare up....a term that CFers use for their lungs not doing so well at any certain point in time. When I was in that time, I met a girl named Jodi. We exchanged addresses and wrote back and forth to each other for a few years. We have since lost contact. Anyway, going to this school is one of the best things that had ever happened. I made a lot of friends and I excelled at a lot of things. My band teacher was impressed with my flute playing, especially with my compromised lungs. That school is where I joined FFA (Future Farmers of America). My older sister and brother also joined. Our Mom was a farmer for many years and we had begun helping her on the farms that she worked on which is probably why we joined.....it didn't last long.

We lived in this one town where there is almost nothing and it was pretty much in the middle of nowhere. There were a lot of kids around the same ages as all of us though. The main kids that we hung out with were the Shiels boys. We would go through our back yard, through a field, across a crick, and into their back yard. They were the closest ones to us and it was fun having friends so close by when there is nothing else around. Our yard was the neighborhood yard for all of the kids to get together and play football or soccer. Of course, with my lungs and how frail I was, I didn't play. I was normally watching or sitting inside doing my school work. We were there through half of my 7th grade year and then we moved again. Back to Lansing school we went for the rest of the year. It wasn't the same. Bekah was no longer there, she had moved to Trumansburg. We still kept in contact and I still went to her house during the summer. I still had friends at the school but I just didn't fit in like I used to....was it because I was sicker than I was before? I don't know. It just didn't feel like home anymore. At the end of 7th grade, it was back to Southern Cayuga and it was great!

I had all the same friends, maybe even more. I had taken 10 weeks of French in 7th grade and did well in it so I continued it in my eighth grade year at Southern Cayuga. I excelled in French and Math that year......99's and 100's all the way across the report card. I wanted to move up in math but for some reason I wasn't allowed. I continued to play my flute in the band and I even tried out for 8th grade basketball with encouragement from my friends, and during tryouts, I had to stop because I just couldn't seem to manage it. That was the year that I also made it to the spelling bee and on my second word, I was out. I spelled bungalow wrong.....it's one of those things that you always remember and always remember how to spell it from then on. At the end of that school year, we left again. I still keep in touch with Alicia and Julie (two of my friends from there) but that's about it. I would love to get back in touch with some others to see what they are up to but don't know how to find them.

My early years.

Now most of this I was told because I cannot remember when I was a toddler. At about the age of 2 1/2 I had a bowel obstruction and was admitted to the hospital. The obstruction was not passing on it's own so I had to have surgery. When the doctors opened me up, everything settled. The doctors then decided to take out my appendix so that there was no possibility that anything would ever go wrong with that. My Mom has told me stories about that hospital visit. I had feeding tubes and whatever else. I was deathly scared of E.T. when I was little and there were people dressed as characters going around the hospital and one was dressed as E.T. When that person came into my room I was so scared that the feeding tube came flying out. E.T. left the room and a monkey came in and I said "Look Mommy, Monkey." Or something like that anyway. I was all happy. A nurse came into my room to replace the tube and my Mom told her that it wasn't necessary but she insisted. Soon after the nurse put it back in, the doctor said that it could come out because I was going home. Go figure!!!

My Mom was great! She was taking care of three toddlers with one being really sick....I can't imagine. She had to constantly change my diapers because I would poop about 10 times a day. Some idiot thought that I always had crappy diapers because my Mom never changed me and she turned my Mom in to CPS. Of course CPS found nothing wrong and my Mom went back to her everyday duties of being a loving Mom. I would love to have come face to face with this person as I got older and show her that my Mom did absolutely nothing wrong. Other than these instances, there wasn't a whole lot that happened in my toddler years. My serious problems would start much later.

Being diagnosed with Cystic Fibrosis

When I was born I had meconium ileus. This is the tar-like stools that come out of all babies when they are born.....mine was backed up in my intestines. My Mom didn't know it then, but later I would be diagnosed with Cystic Fibrosis. Because of having this backed up in my intestines, I had to have surgery right after I was born and the doctors told my Mom that I had a 5% chance of living. My Mom wanted to see me but one of the nurses wouldn't let her because she said that I was all black and blue and my belly was distended (swollen) and that she wouldn't want me. My Mom demanded that the nurse bring me to my Mom. Finally, my Mom got to see me and she fell in love with me right from that moment on. The surgery went fine and I was in the hospital for a little while before my Mom got to take me home. I had a few problems following that and even though we didn't know that the CF gene ran in our family (it has to for a baby to be born with it), I was tested for Cystic Fibrosis 3 months after birth. That test came back negative saying that I didn't have the disease but I continued to exhibit CF symptoms. So, at 6 months after birth, I was tested again. This time the test was positive....my Mom was told that I have Cystic Fibrosis and that the average life span for a CF patient was 12 years old at the time. I would likely never make it past middle school. I have a brother and a sister who were born ahead of me and they do not have CF. I have two sisters who are half sisters and they also do not have CF. My Mom and Dad both carry the CF gene (and didn't know it) and I was the lucky one who received one defective CF gene from each parent, which made me have the disease Cystic Fibrosis. I am now 26 years old and the average life span of a CF patient is 35.1 years at this moment.