K
kaylee04cassidy08
Guest
A Short Walk on a Road Less Traveled
"We do not remember days, we remember moments." ~ Cesare Pavese
I answered the telephone and a woman introduced herself as being from the Genetics Department at Strong. My heart began to beat faster. I felt a little dizzy. I had been waiting for what seemed like forever for that phone call. I choked on a lump in my throat.
She continued softly, "We have the results of your amniocentesis. Your child has received two copies of the gene that causes Cystic Fibrosis and will have Cystic Fibrosis."
The picture of my child that I had been painting in my head shattered into a million pieces. My breath was taken from my lungs. My heart stopped beating. The room began to spin. I dropped to my knees. Emotions flooded my mind, heart and soul - shock, denial, fear, anger, sadness, and pain. I put my head in my hands and began to cry. My husband has said he experienced similar emotions, but he did not cry. He did not even need to ask what the phone call was about. He just held me and was silent while I sobbed. In that one moment, our life, what we had pictured, what we had dreamed of for ourselves, for our children and our family had radically changed.
I have now come to realize that this was the beginning of a grieving process. I did not know that there would be such a process, but when we were told our child would have Cystic Fibrosis, we suffered a loss, a very significant loss. We had lost a "healthy" child. It is not easy to describe what that feels like, other than it cut me off at the knees. It was a very difficult time and I was not sure how we would get though it, but I knew we would. We would have to pick up the pieces of our broken picture and put it back together. We were not going to let Cystic Fibrosis make our family victims.
After our unborn daughter's diagnosis, we began to fight CF. My husband, my daughter Kaylee, and I participated in our first Great Strides event about a month before Cassidy's birth. Being part of Great Strides and helping to raise funds and awareness for CF was really the beginning of the healing process for our family. We initially had a feeling of helplessness because there was nothing we could do to change Cassidy's prenatal diagnosis, but Great Strides was a way for us to take action - to actually, physically do something to fight for a cure for CF. We continue to work with the CF Foundation on a regular basis and have made some great friends and found support from those that are also living with CF.
We were scared to death of what life with CF would be like when Cassidy was first born. Even though our CF team had told us life would be pretty much normal, we were terrified that our lives would be spent in and out of doctors offices and hospitals, caring for a sick child with an incurable disease. We spent the first four days of Cassidy's life in the NICU watching for a suspected bowel obstruction - a common complication of newborns with CF. We couldn't help but think, "This is what life is going to be like."
Cassidy pulled through without any major procedures and when we brought her home we were surprised at how normal things actually were. Initially, the only differences between her and a newborn without CF were that she had to be cupped twice per day and she had to take enzymes. I told her and her curious sister that they were "spoonfuls of pearls" and that Cassidy needed them to grow. And that was that. Life went on. The baby ate. The baby slept. Big sister helped. Everything was going to be okay.
Cassidy was about 6 months old and some of our fears came true. Cystic Fibrosis reared its ugly head and Cassidy was in and out of the doctor's office, on antibiotics one after the other, until she was finally admitted to the hospital for her first "tune up". Again, we faced a low point. It challenged our family to keep ourselves together, to stay strong, to stick together and to face the reality of Cystic Fibrosis.
Cassidy is now a little over a year and has not been admitted since. She has been on antibiotics here and there and does breathing treatments twice per day, but for the most part, life is business as usual. . We know that she will be hospitalized again at some point, but we don't focus on that. We go swimming. We play soccer. We go to the zoo. We go camping. We enjoy each other to the fullest.
When we first found out that Cassidy would have CF we were overwhelmed by the challenges we were going to face as parents, husband and wife, big sister and little sister living with a life-threatening disease. We are only a short distance on this road, living with CF, but we have learned a great deal about CF, life, our family and ourselves. Life is full of ups and downs, especially when living with CF, but we have learned to enjoy the peaks of our life that much more. We have found healing through raising funds and awareness for CF. We live for today and don't worry so much about tomorrow. Cystic Fibrosis has only changed the picture of our life. It will not ruin it.
"Impermanence is the very essence of joy-the drop of bitterness that enables one to perceive the sweet."
- Myrtle Reed
"We do not remember days, we remember moments." ~ Cesare Pavese
I answered the telephone and a woman introduced herself as being from the Genetics Department at Strong. My heart began to beat faster. I felt a little dizzy. I had been waiting for what seemed like forever for that phone call. I choked on a lump in my throat.
She continued softly, "We have the results of your amniocentesis. Your child has received two copies of the gene that causes Cystic Fibrosis and will have Cystic Fibrosis."
The picture of my child that I had been painting in my head shattered into a million pieces. My breath was taken from my lungs. My heart stopped beating. The room began to spin. I dropped to my knees. Emotions flooded my mind, heart and soul - shock, denial, fear, anger, sadness, and pain. I put my head in my hands and began to cry. My husband has said he experienced similar emotions, but he did not cry. He did not even need to ask what the phone call was about. He just held me and was silent while I sobbed. In that one moment, our life, what we had pictured, what we had dreamed of for ourselves, for our children and our family had radically changed.
I have now come to realize that this was the beginning of a grieving process. I did not know that there would be such a process, but when we were told our child would have Cystic Fibrosis, we suffered a loss, a very significant loss. We had lost a "healthy" child. It is not easy to describe what that feels like, other than it cut me off at the knees. It was a very difficult time and I was not sure how we would get though it, but I knew we would. We would have to pick up the pieces of our broken picture and put it back together. We were not going to let Cystic Fibrosis make our family victims.
After our unborn daughter's diagnosis, we began to fight CF. My husband, my daughter Kaylee, and I participated in our first Great Strides event about a month before Cassidy's birth. Being part of Great Strides and helping to raise funds and awareness for CF was really the beginning of the healing process for our family. We initially had a feeling of helplessness because there was nothing we could do to change Cassidy's prenatal diagnosis, but Great Strides was a way for us to take action - to actually, physically do something to fight for a cure for CF. We continue to work with the CF Foundation on a regular basis and have made some great friends and found support from those that are also living with CF.
We were scared to death of what life with CF would be like when Cassidy was first born. Even though our CF team had told us life would be pretty much normal, we were terrified that our lives would be spent in and out of doctors offices and hospitals, caring for a sick child with an incurable disease. We spent the first four days of Cassidy's life in the NICU watching for a suspected bowel obstruction - a common complication of newborns with CF. We couldn't help but think, "This is what life is going to be like."
Cassidy pulled through without any major procedures and when we brought her home we were surprised at how normal things actually were. Initially, the only differences between her and a newborn without CF were that she had to be cupped twice per day and she had to take enzymes. I told her and her curious sister that they were "spoonfuls of pearls" and that Cassidy needed them to grow. And that was that. Life went on. The baby ate. The baby slept. Big sister helped. Everything was going to be okay.
Cassidy was about 6 months old and some of our fears came true. Cystic Fibrosis reared its ugly head and Cassidy was in and out of the doctor's office, on antibiotics one after the other, until she was finally admitted to the hospital for her first "tune up". Again, we faced a low point. It challenged our family to keep ourselves together, to stay strong, to stick together and to face the reality of Cystic Fibrosis.
Cassidy is now a little over a year and has not been admitted since. She has been on antibiotics here and there and does breathing treatments twice per day, but for the most part, life is business as usual. . We know that she will be hospitalized again at some point, but we don't focus on that. We go swimming. We play soccer. We go to the zoo. We go camping. We enjoy each other to the fullest.
When we first found out that Cassidy would have CF we were overwhelmed by the challenges we were going to face as parents, husband and wife, big sister and little sister living with a life-threatening disease. We are only a short distance on this road, living with CF, but we have learned a great deal about CF, life, our family and ourselves. Life is full of ups and downs, especially when living with CF, but we have learned to enjoy the peaks of our life that much more. We have found healing through raising funds and awareness for CF. We live for today and don't worry so much about tomorrow. Cystic Fibrosis has only changed the picture of our life. It will not ruin it.
"Impermanence is the very essence of joy-the drop of bitterness that enables one to perceive the sweet."
- Myrtle Reed