Those of us in this community can all relate to the challenges of fighting cystic fibrosis every single day. We all know the long days at the doctor’s office, feeling at war with our own body, and spending hours doing physio or nebulizer treatments. Each of us has our own individual experience living with CF, yet we can come together and relate to each other on many levels. A similar thing happens amongst our own families, or more specifically, our siblings. They are alongside us during those long days at the doctor, watching us struggle as they try their best to support us. Those of us that were diagnosed with CF early on in life when you still lived with your immediate family know that our siblings were truly in the fight with us. If you don’t have siblings, perhaps you can relate to this post because of the way your parents or friends supported you. We have all had someone who is beside us every step of the way.

I am the oldest of four children. My health issues heavily impacted their lives. As a child it can be difficult to understand chronic illness, how do you tell a toddler that their sister is sick and probably won’t ever get better? My siblings learned to understand CF early on in their life, and were always so supportive of me. They sat with me while I did breathing treatments and helped me when I was sick with a cold. Even small acts of kindness such as refilling my water bottle or grabbing my Pulmozyme from the fridge make a big difference when you’re sick in bed. One of the biggest ways me having CF impacted their lives was their schooling. My parents made the decision to homeschool me in order to protect my health. They made life changing decisions they thought would give me the best chance at a future. Schools can be a hub for sickness and my parents didn’t want me to potentially deal with missing so much school and constantly being behind. As our family grew, my parents continued to homeschool all four of us. I loved being homeschooled, and I was incredibly grateful for that experience, but each of my siblings has their own story to tell. 

I asked my sister Emily to write about her experience growing up with a sister that has CF. Emily turns 14 years old today! She is the most strong willed person I know, she is never afraid to stand up for what she believes in. Her enthusiasm for learning is inspiring. I love how eager she is to absorb all the information the world can give! It was so beautiful to get insight into her life, and I’m thankful that I can understand her even better now. I learned that my health issues impacted her in ways I had not even considered! I encourage you to connect with those people in your life that have supported you, and share your experiences with each other. It’s an incredible way to deepen your bond. I also encourage you to share your thoughts with all of us! How have your family or friends supported you along your CF journey?

Without further ado, say hello to my sister:

“Living life with a sister that has cystic fibrosis has its gifts and its challenges. The challenges with having a sister with CF are very unique, like when we go out we always have to make sure she has her pill case and some water so she can take her pills. Sometimes that meant turning around after we left the house because we couldn’t go anywhere without her pills. We also have to be careful about going near smoke, which means keeping a close eye on our surroundings in public and taking a different route to avoid smoke if needed. During the COVID-19 pandemic we have all had to wear masks because it’s really important for her not to get sick. Since she already has CF, COVID can be worse for her than it is for my parents and our other 2 siblings. The pandemic made it normalized to wear masks in public, when we had already gotten used to doing that in very crowded places. Now it’s even more important to do that.

My sister having CF also has had some perks, like how Make-A-Wish funded our family’s trip to Hawaii, which we all enjoyed greatly. We also got disability passes at amusement parks like Disney World so we never had to wait in lines! It is kind of weird when your older sister has a disease we don’t know how to cure yet. It’s like living with someone who can easily catch a cold everyday. Because of that we were homeschooled for a long time, instead of being at a public school my siblings and I learned from our parents and at homeschool groups. It’s weird being raised near the big city of Atlanta and also being homeschooled. It meant that our friends from homeschooling groups were our only friends, but it also meant some of our school days were spent going to the attractions in Atlanta and writing reports about it. We had such a fun time going to museums, zoos, and aquariums. We also did a ton of CF fundraising events. We would go and cheer or run with people at races like the Big Peach Sizzler, and sometimes we would also help run the finish line tents that help educate the runners on the cause they supported that day. The newest fundraising event my sister did was Salt Fest. It was a big concert where some of our friends performed and a bunch of people came. It was so fun dancing and singing with everyone. 

Sometimes it’s really fun having an older sister with cystic fibrosis, and sometimes it’s difficult, but overall I think she’s a great sister.” - Emily Goodrow