I think we can all agree that parenting is no walk in the park. It's full of highs and lows, frustrations and victories and then some. If you happen to have a child who also struggles with something a bit extra, say Autism, MS, CP or CF you know that parenting is really more like running a gauntlet. With each small victory there is often a blow that knocks you back and even with all the courage and "know how" in the world you feel you could be knocked down for good at any moment. Any good parent will tell you that it's difficult to watch their child struggle through life. A parent of a special needs child deals with this on a larger level. We work hard to make life as "normal" as possible for them. Some of it is the same as with other parents. We worry how they are doing in school. We want them to find an interest and develop their talents. We hope they become well rounded and respectful adults. For a special needs parent, along with all of that also comes the knowledge that there are many things that make "normal" life almost impossible. Some of us watch our children struggle through things as simple as choosing breakfast, or how to handle it when the schedule of the day does not go exactly as planned. Some of us watch as our child works through the muscle pain of just putting socks on in the morning.
For a CF parent you work to be sure your child gets all their medications and breathing treatments every single day. Even something as simple as eating a meal or snack means making sure they get more pills just so they can digest their food properly. Then, when they start showing signs of the common cold, visions of lung damage race from the fringe of your mind back to the forefront of every thought and worry. A small cold is no big deal to most kids. Kids with CF end up doing extra breathing treatments throughout the day and often end up needing extra antibiotics just to kick it. Even with all of the extra maintenance and care, you’re fighting an uphill battle. You know you might just outlive your child at worst and at best they’ll likely need a lung transplant at some point. It’s true that research and treatments have come a long way. In 1955, children with CF were not expected to live long enough to attend grade school. Today, CF patients often live into their 30’s. Even with these great advances anyone living with CF will tell you that it’s still no walk in the park. Being a part of the CF community is difficult as you see others struggle with everyday tasks because lung function has gotten so low. I know I’m tired of running this gauntlet and I know those with CF are even more so. I find myself inspired by CF patients and the lives they choose to live. One of the best things I’ve ever heard was listening to my son say to a fellow CFer, “CF does suck but it’s made us who we are right?” He does complain on a regular basis about all he has to do just to stay healthy but I’m thankful for the research and strength that have kept him around and I look to the future when he and others no longer need to fight this fight.
