Being a CF mom for the past 17 years has proven to be a journey far different than I ever expected. While some of what I anticipated has been accurate, most has been vastly different, either in the journey itself or in how I perceived it. No matter, it has been a journey that has changed me into a person very different from whom began – hopefully the change has been for the good. I feel that it has.
My journey began 17 years ago with the birth of my daughter, Haley. At the time I thought my journey would be like that of any young mother, nothing out of the ordinary – just a life of raising my precious daughter. I knew I would do anything for her and I was committed to make her life as good as mine had been growing up. I had no idea what was to come!
When Haley was 1 ½ she was diagnosed with Cystic Fibrosis (CF). As any parent would be, I was devastated and in utter disbelief. It took some time to wrap my head around what was to come. First I had to grieve – but in silence and with a bright, bubbly smile on my face in order to keep Haley from feeling my pain. The grief came because at that time the life span for children with CF was only in the upper teens/ early twenties. The love of my life, the child I had vowed to protect from anything that could harm her, the child that I had promised myself would live a long healthy and happy life, now had a time limit. All I could think of was how was I going to keep her healthy until a breakthrough came along, all while fitting a lifetime of experiences into a few years in case the breakthrough didn’t come. It was overwhelming to say the least.
By the time we had her follow-up and had learned what we were to do each day, we had realized that the days would be manageable, especially once we had settled into a routine. I discovered that while a lot of new medications and treatments were not available, there was a lot in the research phase and some very promising possibilities were in the pipeline. It was enough to give me great hope and determination. I KNEW that I HAD to keep her healthy and her lungs in the best possible shape so that she would be eligible for the treatments as soon as they became available and so that she would be able to benefit from them. While I still felt somewhat helpless, I was at the same time very empowered and vowed to fight whatever battle it would take and make whatever sacrifice necessary to keep her healthy. I had a goal and I intended reach it!
I would quickly realize that while my heart ached for Haley, CF had become a blessing. So many of my questions had been answered as to why these things happen to children, and why it happened to my child. I came to realize that without CF I would have continued to work hard and dive into my work to the point that I saw it as the biggest blessing for us because it was an income and society tells us that success lies in money. I would have continued to rationalize the fact that my mom was keeping Haley while I was at work so she was in loving hands being cared for probably better that I could care for her. Therefore, it would not matter if a few more hours went by before I came home because we could use the overtime pay. I would have continued to tell myself that a few hours a day was enough time to spend with her and that she really wouldn’t miss me anyway. Even watching television and computer time, unengaged with her in the room, would be justified. Without CF I would have missed my little girl grow up. I would have missed so many moments that I now treasure far more than the few possessions that I may could have purchased back then and probably already gotten rid of by now. I would have missed working at her school and having our schedules match so I could spend every free moment with her. I would have missed treasuring every moment we had together and the close bond that we share. Sadly, I would have missed everything but would not have realized it until she was grown and it was too late to get it back. The fear of what tomorrow held made me learn to live for today and enjoy each day and be grateful for each day we have together. I thank CF for allowing me to be a major part of her life and giving me the perspective needed to keep priorities where they should be. It is because of CF that I value life in a way I never knew possible, I value time down to the second, and I value my children as the greatest, most precious possessions I will ever have in my life.
Years would go by. Haley would begin school, which she loved, and treatments would continue as always. We would later have to balance treatments and exercise regimes with homework and school activities. Unfortunately, there were times when something had to be skipped and it was usually schoolwork. I figured that if her health failed the academic accomplishments wouldn’t mean much, so I pushed her to maintain herself at least to grade level and do the best she could. We tried to keep from being bogged down with duties and miss out on fun and adventure. It was a difficult balance, but looking back I think we did quite well. Her health continued to be far above the average CFer and while the possibility of a cure or even a breakthrough treatment being approved was far into the future, hope was still very alive within me. Some medications and treatments did become available along the way that would slow the decline of the disease, but they were not for Haley. She reacted badly to each one that come along. Still fearing for the worst, I continued to fight for the future. As the years came and went without significant decline, it seemed the fight may be paying off. As we continued to approach the age that was considered the early end of the life span when she was diagnosed, the quality of care was improving and the average life span was increasing into the twenties and thirties. Although we have known several and heard of many others who have lost their fight over the years, Haley was in good health and it was predicted she would statistically fall into the older age bracket. Good news on days when the fight gets hard! Those small victories continued to give me strength to continue the fight until the big victory is won.
Recently, the FDA approved a medication that was the breakthrough we have been waiting on. It is not a cure, but a treatment that boarders on being nearly as good as a cure. The fight has paid off! Haley is healthy enough to be able to benefit from the treatment. As a matter of fact, it has been a remarkable improvement for her. Her entire quality of life has improved and she has been able to taper off of some medications as a result. We hope the improvement continues and will last. It is new and there is still much to be seen, but currently it holds at near miracle status.
If all continues as it is today, CF will not become the curse we have all feared for so many years. CFer’s are now commonly living well into adulthood and it is expected with this new medication and others that are predicted to soon follow, that those who care for themselves well and stay on top of their treatments will have the potential to live normal life spans with a normal quality of life. Theyjourney is not over, but for us it is reaching a huge turning point. Our entire life focus is changing. Haley will graduate from high school in a year. After that I will no longer have to ask “what will she ‘be able’ to do” or “how can we help her achieve what she wants to do” or “how long will she be able to do what she wants”? Now there is no future time limit. Now the door is open for whatever Haley desires to do. There is time for her decide. Time has suddenly become our friend and not the enemy that we have fought for so long. Time is now on our side.
This new look on the future is more difficult than it may seem. It doesn’t feel natural and feels more like I am letting my guard down. The fear that I am missing something and becoming weak and lazy haunt me daily. What if I am allowing the perils of CF to enter through the back door and attack? When something seems too good to be true it usually is. However, I have learned over the year from CF that you must live and you must live to cherish the moment. For now I have chosen to journey in the passenger seat and see where the ride takes us. After 17 years this CF mom is enjoying this moment of victory while it lasts. I will enjoy seeing my daughter laugh and feel really good. I will enjoy our time together as I always have. I will, for the first time, enjoy the relaxation and comfort of knowing that for now everything is great!
The Heart of CF Research
Research is just a word for so many. Although most everyone benefits from research and most feel it is a very good thing, many do not have a deep connection with actual research. It is not a tangible thing for them. For most the word research does not strike emotion and their heart doesn’t pound with excitement when they hear an amazing research breakthrough. Actually, for most the thought of research seems a bit dull and unexciting.
For me, research is what makes my heart pound with excitement. Without research my heart would be broken, because it is likely that my daughter would have left me years ago. I live for research and all the discoveries that result from it. It is both amazing and exciting. However, finding people who share in my enthusiasm is a pretty tough job!
Since my daughter was diagnosed with CF I have known that her only real hope was research. This type of research is very expensive and CF is not something that touches most families like so many other diseases. Living in a small town we spent years trying different things to raise money to help in CF research. However, so much of our time is spent on CF treatments, work, school, etc. that not much time is left to socialize and build contacts and social networks (it can actually be a bit lonely at times like these when you need people but there really isn’t anyone). Because of this we really only had 2 or 3 family members who did anything to help and even then we were at a loss for ideas as to what to do. We would host whatever events we could think of and be happy with any profit we made to hand over for CF research.
Around 8 years ago our lives would change. A friend came into our lives who proved not only to be a genuine friend, but they became like family. Rich is a friend you can depend on no matter the circumstance and he looks for ways to enrich the lives of those around him. That is exactly what he did when he began planning the 1st annual Haley’s Team 5k Twilight race.
The fact that Rich was willing to do this for my daughter meant and continues to mean more to me than he could ever know. It gives me so much strength to know someone is fighting with us. My heart became bigger and stronger that first year and has continued to grow every year after!
The success of this race has been unbelievable! Rich has continued to ensure that it grows every year and gets better – even with the fact that he now lives over 4 hours away. The number of runners that we have amazes me each year. Rich has created a huge event that has become part of our lives and the lives of our family. It is the heart of what we do for CF research and allows us an opportunity to bring awareness to the community about CF. The success of the race has brought nearly $50,000 directly into CF research at the local level. Truly amazing for a small community and a small group of people working on a race for only 5 years.
During the years the race has been going on, CF research has brought a remarkable breakthrough! Much of the money that we have raised has gone directly into the local research budget for a breakthrough drug. This drug has taken many years to develop, but holds promise for some CF patients to be as close to a cure as can be without actually being a cure. Because of the money raised on the Haley’s Team race, more people have been able to participate in the research, and more research has been able to be done, allowing the research phases to be completed more quickly – leading to earlier approval.
While this particular medication (Kalydeco) is only a breakthrough for a few CFer’s there is more like it working its way through the pipeline that could be a huge benefit for a greater number. Some are even showing promise in being the breakthrough that Kalydeco has been for this select group. Without continued support for research it either can’t happen or can’t happen quickly. Without money, and lots of it, research can’t continue. Without a continued passion and drive life would not be the same for so many, life may even cease to be. Research is the heart of this disease and the families it affects.
Although I continue to be amazed at the generosity of individuals and businesses, those who come out to support the Haley’s Team race by volunteering and running equally amaze me. It is an event that takes so many to be a success and I am touched by each and every one who helps to make it happen. My family is very active and supportive and my once shy, CF daughter has blossomed into a young lady who eagerly stops into any business or company she can think of to ask for sponsorship. It becomes a wonderfully emotional event when I stop to think about all that is really going on. However, without Rich’s heart and his mastermind in race planning and preparation it would not be. Without Rich and others like him the heart of CF could not beat and the ominous reality of the disease would be allowed continue.
I have been around CF and CF research long enough to know that everyone that helps does make a difference. For us that difference has been very personal and one that I feel forever grateful. We are so lucky to have a research team nearby that has done remarkable things. We are also so fortunate to have a friend in our lives like Rich (and his wife, Gwen) who is helping in the fight. Rich has given my heart much hope throughout the years. He could never know exactly what that means to us and too other families and people with CF, but I do hope he is able to realize how much he is appreciated and how no effort goes unnoticed. I feel forever blessed to have such a wonderful heart be a vital part of our family.
— Thank you!