The sibling relationship is a special one, and it is especially important in families living with cystic fibrosis. Today, I want to share with you some thoughts on being a CF sibling from my 19-year-old daughter, Sydney.
At the Boomer Esiason Foundation, we are working hard to provide support for CF families, and we also play a significant role in research toward a cure. I hope you will consider contributing to our efforts with an end-of-year donation.
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With warm wishes for the new year,
AN INTERVIEW WITH SYDNEY ESIASON
How has cystic fibrosis affected you? “It’s hard for me to answer a question like this. I think every sibling of CF is affected differently than the parents and friends are affected. For me, I sometimes find myself thinking, ‘Why not me?’ It is a genetic disorder, and it is rare that I don’t have the disease nor carry the gene. Parents and friends don’t have the same psychology as that. It saddens me when I want to take on Gunnar’s everyday load, but I know I was not meant for the disease; only the strongest people in the world can live with CF. Even if I don’t see Gunnar or talk to him every day, he is always on my mind. A sibling is there as a rock when needed. CF, in a way, has made me a stronger person for myself and for him. It has changed my perspective on everything. It is one of the greatest adversities in my life, so sometimes the most trivial things seem so miniscule. It has given me a positive outlook, and as much as I hate CF, it has given me the opportunity to really enjoy what matters in life.”
What is your best memory about Gunnar? “Oh, there are a ton. There have been numerous times that Gun and I have been in the car together when he’s driving, and I feel like his co-pilot. He makes me assemble each one of his treatments, and secretly, I feel like a little doctor or scientist. Probably the funniest memory, though, is when he was coughing so hard, and a wad of mucus came flying out of his mouth and into my hair. At the time, it was not so funny, and I flipped out, but looking back, I can’t help but find it funny. Another thing I can’t help smiling about is Gunnar’s laugh. A lot of CFers share this trait; they all have the greatest laughs. It’s like a mix between a cough and a laugh, and it is the most contagious laugh in the world. Even when he finds something funny that I don’t find funny, I’ll laugh anyway just because he is.”
What’s the best thing about having a CF sibling? “Gunnar is the most important person in my life. When I look at him, I don’t see CF. I see a 6’3″ goofy, Under-Armour wearing, hockey-playing, all-American, fun-loving, smart college kid. If you didn’t know Gunnar, it would be very hard to tell he has a disease like CF. I think a positive aspect is seeing Gunnar live his life day-to-day without the disease wearing him down or making him a different person. So those times when I feel sick or tired or sad, I think about that, and I just want to slap myself. Gunnar wakes up every day feeling the way he does, but he faces the day with every bit of normalcy and happiness someone can possess. It makes me want to be a better, more active and happier person, and it has. I have the ability to do so many things thanks to my health. I don’t think I would have realized that without Gunnar in my life. I wouldn’t cherish every moment I have with him – or at all – as much as I do, if it weren’t for him.”
What does the Boomer Esiason Foundation mean to you? “BEF has helped me in so many ways. If it weren’t for BEF, I wouldn’t have understood the disease as well as I did at such a young age. When I was younger, I knew Gun had to wear that little mask that made him breathe in and out, and that my dad had to pound his chest for 45 minutes every day until he coughed a lot. However, being around the events, the people and other CF patients growing up, I understood very quickly what was going on. BEF has helped me realize how loved Gunnar and our family truly are. Our staff and all of our friends are always there for us no matter what. Every single person dear to us is willing to help in one way or another, and that feeling is so reassuring for me. Whenever I’m upset about how the disease is affecting Gun, I know that anyone in our BEF community, or any one of our friends, is willing to be there, and that has been a blessing for me. Most of all, though, BEF has helped so many CF patients, and I know as well as anyone else that this fight is not over until we find a cure. Knowing how determined I am – and everyone else is – makes me want to be a better person, and always help out and do the right thing – not just for BEF, but in every part of my life.”