Summer 1999 Newsletter: Patient and Parent Perspectives

Patient and Parent Perspectives

The Ups and Downs of Life

by Tracy Whitehead, PWCF

Everyone knows that life has its ups and downs. I have had my own share of hard times in life like having children, getting divorced, rebuilding my life, starting new relationships, dealing with close friends with CF dying, and on and on. It was not just having CF that has been a challenge for me, it was trying to make myself feel as normal as possible. I have realized since having my two children, whom by the way are a blessing from above to me, that I am normal. In God's eyes we are all the same.

Being a parent has its ups and downs. There are times when I wish I could take a break, then there are times when I would not give anything in the world for what I have. It has taken a lot for me to be where I am today. I know it is God's plan for me to have two wonderful girls, and it is up to me to be the best mom I could be. I know that no one is perfect and well just have to do the best we can. I have come to the place in my life where I have realized that I can only do so much in having CF, but I do the best I can with how God has made me.

Having CF has really been a blessing to me -- I have met some wonderful friends with CF who are blessings. Some of these blessings are no longer here, but as long as we remember these special friends in our heart, their candle will always burn. We learn from one another, which teaches us more about love and responsibility to live as we ought to live. God gave us life. We have to live it the best we can, and it is up to us to keep our own candle burning. This is the blessing of life.

A Testimony of Glory Amidst Tribulation

by Nancy Cluck (mother of Tony Cluck, PWCF)

Tony's health of living with CF has been a great testimony to his own family and to all of those who know him. Our lives were pretty normal in spite of living with a child with CF in our home. Gene, his father, and I really pulled together as much as a family with a father traveling four or five days a week.

Tony's hospital stays had been very few until he reached the 8th grade. Then, his health seemed to change. He was in the hospital several times that year. As he had been accustomed to making "A's", it became very stressful to keep up. Since I had started working at the school, it became hard to keep my job going and to be with Tony all the time, and it seemed his father was gone more and more.

Years later we discussed that year, and I remember Gene saying that he knew he had to make a living and keep insurance going. This brought guilt and anger on his part trying to be in two places at the same time. We look back on it and wonder how we made it. It was very trying on our marriage. We had two other children that we tried to give as normal a life as possible. Tony's attitude about life was amazing. His great attitude was a major part of getting us through the hard times as well as our commitment to never give up no matter what. How did we make it through the hard times? Our belief in God pulled us through. We've all pulled together to make this a very pleasant journey. Tony has been a very special blessing in our life and made us all better people from the experience. He has one of the best hearts of love that I have ever seen.

Another way that we got through the hard times is not giving up on our doctor, or the medicine that we knew needed to be taken to stay healthy. Tony was in the eighth grade during his last hospital stay and Dr. Brasfield started him on Dicloxicillin full time. He had never taken antibiotics all the time until then. This turned him around, and he completed high school with no hospital stays. After graduating he went on to finish Electronics school for 18 months. He's been married for five years (God sent him a wonderful mate) and he has a full time job. Don't allow your troubles in life to divide your marriage -- we've made it for 40 years. Most of all don't be afraid to dream for your child and TEACH THEM TO DREAM ALSO.

Bam, Out of the Blue

by Ginger Parsons (mother of Abby, PWCF)

Parents of children with CF generally are dedicated to the cause. They learn to adjust their lives to the demands of the daily schedule. At diagnosis, the new regimen for a CF child seems cumbersome, but you can learn to adapt. As time passes, all the medicine, therapy and treatments become as routine as brushing your hair, and you think you are in control of the situation. Months and even years may pass without feelings of utter loss of control surfacing. However, small things that seem insignificant, like remembering your little girl's pills before you let her go to the choir, can become a big deal without any warning. The important thing to remember is that it is OK to feel overwhelmed. This is part of the learning process!

My most recent "bomb" came out of the blue and had to do with me, and was not about CF, but it forced me to deal with CF in the middle of it. I received a chronic diagnosis requiring increasing doses of medicine with side effects. This was a threat to my ability to care for my child.

This lesson taught me to allow myself to depend on God, my family, friends and support groups to help in these times. I learned that with less emphasis on myself, this freed me to receive those blessings from God and those around that love me and my child so much. It also showed me that it is prideful to not ask for help and it robs others of the blessings of giving.

Bam, out of the blue, a new realization. What you perceived as a weak moment can really build strength to carry you and your child through the harder times that may come.

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