You better brace yourself. Other adults in your life are already telling you this, but you better learn to listen up. Your parents know a bit better than you do, but I’ll give you this: You’re smart, you’re ambitious, you’re idealistic, and you have a sensitive heart. You have a good blend of both Mom’s and Dad’s best characteristics, and probably a bit too much of their worst ones.
There are a few moments I’ll need you to internalize, as these moments will have long-standing effects on how you view the world. You’ll learn from a young age how to make fun of yourself for having cystic fibrosis, but you’ll take everything else to heart. You’ll tease your mom that she’s partially the reason you have CF, without entirely realizing just how heartbroken that made her feel. You’ll build a strong exterior even as your heart breaks seeing your sister sick. At times, this hard exterior will come off as callous; your family will worry about you and be concerned that your mental health is troubling, even as they offer you a space to feel everything. These people love you, buddy, they really do. Don’t ever question that.
Your stubbornness is partly good, to be sure, but your self-bestowed role as rock of the family will make things harder than they have to be. You’ll spend less time with them because being around them will remind you of the fragility of life. I get it, I still struggle with that and I’m in mid-20s. (Yep, you’re going to survive to at least 25, even though you’re scared out of your mind that you won’t make it past college. Congrats on the college degree, by the way!)
One night, when you hang out with friends, Pops will ask you if you want to watch a movie, and when you say you have plans, he’ll ask if you’re embarrassed by him. It will be one of the first moments in which you feel a deep sense of shame because you could never be embarrassed by your family. But being with friends provides you an escape from the reality of it all.
You’re a good little brother. You care so deeply about your sister, and her health struggles are partially why you’re so healthy. You love her a lot, and sometimes that manifests in the wrong way. You really should spend more time at the hospital with her. You know that same escape your friends provide you? She will need that a lot in the coming years.
There are many things I wish I could tell you, but I need to save some of the spice of life. What I really want you to know is this: You have a good heart. That good heart will be both your biggest strength and your biggest weakness. You will continue to care deeply about people you will inevitably hurt. You will set sky-high expectations for yourself — impossibly high, and no one could meet them, not even you.
Alyssa loves you, and she is the best big sister you could ever dream of. She is funny, pretty witty, compassionate, and excited about life. Cherish every moment with her. Ten years from now, you’ll wish you had more time with her and that you had been more present when you were younger. Seeing her sick will break your heart forever, and that will never change. What will change is that you will become stronger, but your heart will forever remain empathetic. Caring for others matters to you. Don’t forget that.
It’s a good thing you’re thinking about medicine, but remember, high expectations can be ruinous. On the bright side, it’s a good thing you’re falling in love with science. Keep talking to your teachers. A few that I would strongly recommend getting to know are those teaching you how to write words in the best way and the ones who help you flourish. Those teachers will affect you for the rest of your life.
Kid, try to live your life a little. It’s OK to let loose and enjoy your life. You’re alive for a reason. Keep caring about life and about others, but life is meant for living. I promise, you have many, many upcoming opportunities to be sad and to work through your CF. But right now, just go be a kid. That’s what your family wants.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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