My late sister’s birthday prompts reflection on being siblings with CF
What it was like growing up with a sister who had the same rare disease
A few days ago marked what would have been my sister Alyssa’s 37th birthday. To pay homage to her this year, I’m reflecting on what it’s like to have cystic fibrosis (CF) myself as well as a sibling with CF.
When people learn that individuals with CF are advised to stay six feet apart, they commonly ask how we managed this “rule” in our household. In our case, we did not. We were certainly more careful when either of us was sick, but otherwise, we didn’t dramatically alter our lives. It’s hard to know if it would’ve made any difference for us health-wise. Honestly, I feel like it would’ve made our lives even more difficult.
Alyssa LaRosa poses behind the wheel at about 16 or 17 years old. (Courtesy of Tré LaRosa)
Growing up with a rare disease like CF can make you feel abnormal or like an alien. Children already struggle to make sense of the world without CF. Alyssa made me feel much safer and more normal. She was the only other person I knew who understood this identity.
Alyssa, who passed away in 2018, was outgoing and charismatic. Like anyone, she had dreams, ideas, and fears. She was resilient and brave, except when it came to needles, which made me chuckle. Alyssa taught me a lot and was protective of me. She was also funny: She cheered when she learned I’d been diagnosed with CF. She was a wonderful person and big sister.
The challenges
But having a sibling with CF was also hard at times. I worried a lot about my sister. It sucked seeing her in the hospital. I didn’t understand why my life seemed so easy compared with hers. Even though we both had CF, I never faced many of the challenges she did, such as difficulty gaining weight and frustrations with school administrations and peers. Sometimes it felt like the cards were stacked against her. As her little brother, I felt helpless to do anything, no matter how badly I wanted to. I pressured myself to reduce others’ worries by doing everything I could to avoid getting sick.
Tré and Alyssa LaRosa smile for a photo in December 2017, three months before Alyssa died. (Courtesy of Tré LaRosa)
As I got older, I began worrying about my sister dying. I felt guilty and horrible for even thinking about it, but her health was fading quickly. I didn’t know how to process anticipatory grief; I panicked, wondering how my parents and I would process her death. The thought made me nauseous. Refusing to ignore this real possibility forced me to process the world around me. And because I had CF, too, I had to consider that a premature death might also be my fate.
History doesn’t repeat itself, as the saying goes, but it often rhymes. In the case of our family, that looks like two generations of men having a sister with CF. My father was the older sibling, but like Alyssa and me, he and his sister, Renée, had a six-year age gap. My dad does not have CF, but he also lost his sister to this horrible disease.
I wonder if knowing that my dad lost his sister made it feel inevitable that I would also lose mine. I am grateful my parents were so supportive. Despite all the abnormal parts of my childhood, they did a great job of making our lives feel normal.
Looking back, my relationship with Alyssa was like that of most other siblings, which is exactly how I wanted it. CF added complications that most people don’t have to think about, but sharing this disease allowed for moments of humor that strengthened our bond and diffused the tension of life with chronic health issues.
Just three months before her death, we created one of my favorite memories: one of the last times I made my sister laugh until she coughed and cried. Just a week before she died, we were still joking and bickering as siblings do.
It’s difficult knowing my sister was only alive for a portion of my life, but I’m grateful for the time I had with her. She had a profound impact on our family and many others. I look forward to telling my future kids about their Aunt Alyssa. She would’ve been the best mother and aunt, just as she was the best sister.
Happy 37th birthday, Alyssa. The world isn’t the same without you.
From left, Frank, Sue, Tré, and Alyssa LaRosa take a family photo about a year before Alyssa’s death in March 2018. (Courtesy of Tré LaRosa)
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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