My Seester!

We are the world's okayest
sisters!

When you have a disease that takes up a lot of time and energy, it's easy to forget that you're not the only one the disease affects. My younger sister, Alaina, has always been by my side and one of my biggest supporters. I asked her a few questions about what it's like to have a CF sibling.

How do you think having a sibling that has a terminal illness affected you when you were growing up?

Ya know, I've thought about this before, and I kind of feel like when we were younger, it wasn't really a "big deal". I feel like Mom and dad always did a really good job of not highlighting the fact that you had a terminal illness (at least to me) It was just something you had to deal with a little differently than a "normal" kid. I don't ever remember feeling sad or scared about your CF until we got older and I had a better understanding of what it was. 

I’ve read articles about parents that are worried that their non-CF child will be jealous of the attention that the one with CF gets. Were you ever jealous or resentful of any additional attention that I might have gotten?

I'm sure there were a few times growing up where I was jealous of the extra attention that you got, but again, I think mom and dad did a pretty good job of making me feel equally as special. If anything, I think I maybe got away with more stuff than the average kid may have. I do remember plenty of times that you were angry or annoyed that I got all the same privileges as you even though I was 2 years younger. i.e. same curfew, same allowance, etc.

Both of us have made the decision to not have children. Did the fact that you may be a CF carrier play a part in your decision?

It did play into it a bit, but that wasn't the only deciding factor. If I had really wanted children, I would have definitely had myself tested for the CF gene prior to finalizing the decision to do so. 

Since I was pretty healthy growing up, we didn’t deal with a whole lot of CF stuff. I kind of feel like I missed a “CF 101” class along the way and still get caught a bit off guard when people ask specific questions about it. Do you feel like you could adequately explain what cystic fibrosis is to a stranger?

I feel pretty confident now while explaining what CF is when people ask me about it, but when we were younger, no way. I knew that whatever it was, it made you cough all the time, mom would always ask you about your poops, you had to take a buttload of pills with each meal/snack, and we had to take frequent trips down to Denver because of it. As I got older I realized that I hardly knew much about it and took it upon myself to research it more thoroughly. 

You are a massage therapist and yoga instructor/owner of Om On the Range Yoga & Massage. Do you think having to go with me to the hospital every 3 months for our whole childhood led you to a career in in the health industry?

I had never really thought about that. I imagine it probably had something to do with my interest and comfort level of being in hospitals and health centers. It did, however play a huge part in emphasizing the importance of breathing! I remember going along with you when you would do your lung function tests and having the docs give me a shot at it as well. I remember them teaching you how to take deep belly breaths and that has always stuck with me. In massage school and Yoga Teacher Training, they say how many folks never use even half of their lungs when they breath and I found it as shocking since taking big deep breaths was such a second nature thing in our household.

If you could give any advice to a kid that has a sibling with CF, what would it be?

Love them and treat them just like any other sibling. Don't treat them differently than you would just because they have CF (within reason. I realize that not all CF kids are as capable and healthy as my sister was, and may not be able to take part in all the "normal" kid activities). But play with them like they're your sibling, and fight with them like they're your sibling, because that gives them some normalcy in their lives. But, also, be curious about their illness and ask as many questions as possible, and be there for them when they need you. And just because they may be sick, doesn't mean that they can't be there for you when you need someone to talk to as well.