What Cystic Fibrosis means to our family

Cystic Fibrosis is such a broad word. Our family was introduced to the heredity disease when we went to Iowa City hospitals to have a sweat test done. When I received the call from the nurse saying that her new born screening test was not normal. Part of me wanted to hung up the phone and forget the call ever happened. I then came to m senses and scheduled an appointment.

I have heard Cystic Fibrosis before, but had no idea what it was. The day of the appointment it just seemed like any other day, taking one of the children to the doctor. We also have a 3 and 1 year old at this time. They completed the sweat test, which is exactly what the word means, but it is done on the leg. She was wrapped in plastic wrap. She was such a great little girl, slept through the whole thing. The sweat was collected and we had to wait for the results, which took around 2-3 hours. We went and had lunch and my husband and I talk about many difference topics. One thing that I will never forget him for saying was "hope we never have to come back here again". He spent alot of time at the hospital when his father was sick about three years ago and was not keen on the idea of coming there on a regular bases.

Finally we were called into the office and all the test show very high numbers and that she had Cystic Fibrosis. As the nurse and the doctor was going over some treatments and they were talking about the worst I thought that we would never leave here and she would be in the hospital every other week. We we both scared for her, we did not know what was going to happen in the future. The doctors and the nurse we going over problems that Cystic Fibrosis children have to overcome. It was overwhelming. They talked about feeding tubes, coughing all the time, all the treatment that would have to be done. I was horrified wondering if I can do all this, have a full time job and take care of my husband and children.

They offered support groups and different ways to go though this challenge. That was great and I took all the information in. In some ways they made us feel overpower by this disease and they gave us the worst case scenarios. They are doctors and they know what they are talking about, but why do they have to mess with all your emotions.

When the shock was over, they discussed putting her on some pills that she would take every time she eats. Think about it she was eating every two hours and what was going through my head, how is that going to happen.

We left the hospital and neither of us spoke, we were silent all the way home. Made a few calls to family and friends and explained the whole story. For the first month it was rough, being introduced to something new and then trying to manage my time without thinking about what could happen. Nobody wants to think about the pain a child is going to have to go though or even losing a child.

Thinking back to the first month of her life there we times in a day that she would want to eat every hour, now we know why. Her diapers we full and very smelly. The pills that she would be taking now seems to be helping.

Mady is 18 months old and she still is taking her pills with every meal. That is the only treatment she is on currently. She is at 60% tile on the national average weight for children and 25% tile on height. We dealt with the issue and now currently there is not issue anymore. We treat her just as we treat the other children and she is doing great. Of course there are many questions that pop up along the way and we deal with them as they come just as we deal with our other two children.

Many times when there is a issue or problem everyone thinks the worse and that is fine, but not for our family. All of our thoughts were just what they should have been when my daughter was diagnosed with Cystic Fibrosis, but we moved on and you can't run, but you can live your life to the fullest.