Caring For a Child With Cystic Fibrosis

My little cousin Sara was only 3 years old when she was diagnosed with cystic fibrosis. My aunt adopted her when she was 4. Making the decision to adopt a child with this disease was not an easy one. Much research was done by the entire family. By the time the adoption was final, we thought we knew it all. Boy, were we wrong!

Although we understood all the medical details and that we could loose Sara at any time, the emotional strain took a toll on all of us. We fell in love with Sara the moment we met her. After a short time with her, our biggest fear was that we could loose her each time she got sick, so naturally the stress level was always high when she became ill. Still, the good times more than made up for the bad.

With her immune system weak from CF complications, she was sick a lot, and required hospitalization most of the time. All the family volunteered to take turns sitting with her so her mom -- my aunt -- would still be able to work enough to keep her job. I guess you could say that Sara was considered an extended family adoption. We all jumped in and helped in whatever way we could.

When Sara was at home, she still required lots of care and attention. There always were family members available to babysit while mom was at work. This meant that we all pretty much learned basic CPR and respiratory treatments. There was always someone there to do her chest physiotherapy and her breathing treatments. Sara loved being outside like any other child. On her good days, someone would always be able to take her to the park or just sit outside letting her soak up the sunshine. With the special high calorie, high fat diet she was on, a lot of extra cooking was required. Yet, with so many people loving her, believe me when I say there was never a shortage of food.

As you can see, taking care of a child with CF requires a lot of time and patience. There are many sleepless nights. The stress of never knowing what the outcome of something as simple as a cold will be can wear you down. To see your child fighting to breathe is nerve-racking. The simplicity of day-to-day living that you once enjoyed comes to an end. Each day and night is filled and you'll find yourself wishing for even one extra hour.

I really don't think it is possible for one person to do it all. If it wasn't for our extended family helping with Sara, there would have been no way that her mom could have continued to work and provide the care that she needed. If you have a CF child, plan on asking for help from family and friends. Do not try to be a Supermom and take it all on yourself. I do not think it is possible.

Now I know this all sounds quite depressing, but you have to think of the up side. Knowing a CF child can be the most rewarding experience of your life. They are normally upbeat, funny, sensitive and full of laughter and smiles. Sara has certainly brought love and joy to our family.