Thanks again to all of my friends who participated. I am going to try and include these questions and answers over the next several days.
{The Questions}
1. How did your parents positively influence your life and living with CF? How did they negatively influence your life?2. What unique memories do you have of your parents and how they took care of you living with CF?
3. What did your family or friends do to help you through your most difficult times with CF?
4. Did your family ever stop you from participating in anything because of your CF? In what ways did they push you to do things to help you?
5. What are the three best pieces of advise you would give to a parent of a child with CF?
{Christy Hamilton}
My friend Christy Hamilton lives in Charlotte, NC and was one of Duke's first lung transplant patients I ever met personally who had a profound impact on me and does to this day. Here is what she had to say.
1. How did your parents positively influence your life and living with CF? How did they negatively influence your life as a CF’er?
My parents were such amazing caregivers. They both poured everything into my CF care, never complained about anything regarding my treatments, 3 hour trips to see the CF pediatrician, or taking extra precautions in keeping me well. They never let me even think that my CF might be a burden on them. Negatively speaking, I think that both my parents and my doctor sheltered me regarding possible complications I might face in the future. I wish they had been a little more open with me and prepared me for the eventuality that I would get sicker and may even have to have a transplant one day. I feel like sugar coated everything, and I think that might be one reason I didn't take the best care of myself when I was in college.
2. What unique memories do you have of your parents and how they took care of you living with CF?
I have several unique memories. The most vivid memory is the stories that my mom would tell me during chest pt. They were about a girl named Annie, and over the years, Annie had many adventures. I couldn't wait to have chest pt time, so I could hear another Annie story. I have often encouraged my mom to write children's books about Annie. Another memory is the 3 hour trips we would take to see my CF doctor every 3 months. The entire family would go.. my mom, my dad, my sister, and me. The CF clinic was located in the mountains where "The Waltons" from the tv series supposedly lived, so on that trip, we would get Waltons' stories, and my sister and I would always get to pick out the restaurant we wanted to eat at. I think making it a family thing kept my sister from being left out, and it also made CF visits a special family time.
3. What did your family or friends do to help you through your most difficult times with CF?
As a child, I was never sick and never in the hospital. It wasn't until I was 23 that I was first hospitalized with a lung infection. My family has been there every step of the way with every hospitalization though. Someone has always been with me, and when I needed a double lung transplant, I had 41 friends and family members who stepped up to be tested, since it was determined that I would need a living-lobar transplant. My mom and my uncle were matches, and they each gave me a lobe of their lung. Later on, I needed a kidney transplant, and my mom also donated her kidney to me. No one has ever made me feel guilty for being sick or needing organs. :)
4. Did your family ever stop you from participating in anything because of your CF? In what ways did they push you to do things to help you?
No, my family never stopped me from participating in anything. I was a very active child. I played soccer, did gymnastics, was a baton twirler, a cheerleader, and even an aerobics instructor in high school. I know that all of these things helped to keep me healthy longer. When it was time to go to college, my parents encouraged me to go where I wanted, and never held me back. They pushed me to get out and find my dreams.
5. What are the three best pieces of advise you would give to a parent of a child with CF?
1. Never let your child think their CF is a burden on you. It's ok to cry with them, but don't cry over them... do that in private. Never let them think they are burdening you with their treatments, appointments, hospital stays, etc. If you are having problems with your boss because of missed days or any other problem that is the result of your child's illness, never let your child hear those conversations. Keep those private. 2. Don't shelter your child! If your child wants to play baseball, let them, or any other sport or activity for that matter. If they want to go away to camp, let them go. They need that autonomy. They need to fit in! That is so important for a child who is living with a chronic illness. Let them have the autonomy of taking over their care for a night if they want to go to a slumber party. Even if they do miss one treatment, it won't be the end of the world, and it might just give them the little bit of freedom they need every once in awhile. 3. If your child asks about the progression of CF, tell them! Of course you will also want to tell them about all of the new treatments being found and the research that continues to be done, but don't keep things from them regarding the eventuality of CF. I think being truthful with your child is the very best thing you can do for them.
