Traditions Through Transitions
Uncommon Lungs: Beyond the Episode
Maggie is a proud member of the Latino community and a devoted mother of two, including her adult daughter who lives with CF. She shares how she balances the demands of caregiving while managing a career, while staying rooted in her culture, recognizing when to embrace change in tradition.
Remember, everyone’s experience with CF is different. It’s important to work with your care team to navigate your specific needs throughout different stages of your life.
How have you found a balance between helping Coco become independent and still staying very involved as a family?
You know, with Coco I’ve always tried to balance giving her space while staying involved. In Latino families, we can be very protective and I know I was maybe overprotective when she was young. But, I also respected her wishes. Like when she was a child, she didn’t want her friends to know she had CF—and I was okay with that. I wanted her to be comfortable with whatever choices she made for herself.
As she grew up, I supported her independence by letting her make her own decisions, while offering guidance when she asked. When she came to me asking what she should study, I mentioned nutrition but told her the most important thing was to do something she truly loved. Now she’s thriving! She has her own life, with her job, her partner, and even a puppy. So I guess you could say that helping Coco find her independence was really about respecting her choices, while also making sure she knows she’s not alone. We still talk a lot, go on walks together, and of course, we cook. I just always want her to feel loved and supported, no matter what.
Can you expand on what it’s like to care for one child who has CF and one who doesn’t?
A lot of the time I wish I could have been in two places at once. But, my son is so amazing, and through all the hospital visits and when Coco needed extra attention, he never complained once. Balancing care between my two children as a single parent was tough, but I did everything I could to make sure my son felt just as loved and important as Coco. We would create special times together, like bringing homecooked food to the hospital and celebrating holidays. Just really making the best of tough situations. My son is incredibly kind and a giving person, and has always been there for Coco and me.
I’m also very lucky to have had help from other members of my family, who all stepped in to support us when we needed help.
“Supporting an adult child with CF means finding ways to stay close and respecting their independence to reach for their goals.”
–Maggie, parent of a daughter living with CF
Are there any cultural barriers or language barriers you and your family had to overcome to feel accepted or understood at hospitals or CF centers?
CF isn’t well known in the Latino community, so one of the biggest challenges has been explaining what it is over and over. I had to find the right words to advocate for Coco since sometimes people didn’t really understand why Coco needed special treatments.
When we were at hospitals or CF centers, I was very lucky to have such a great care team for Coco. Language wasn’t a big barrier for me because of what I do for work as a translator, but there were moments where I had to push to make sure we were fully understood. This isn’t the case for everyone in our community though, which is why I am so passionate about raising awareness so families can get the support they need without feeling unheard.
When your kids were growing up, did you typically make CF-friendly meals that the whole family could eat, or did you prepare something separate for Coco?
I’ve never wanted Coco to feel different or singled out, so I would make CF-friendly meals that the whole family would enjoy. I did this by adjusting our traditional recipes to be healthier and more tailored for someone with CF, while still keeping the flavors we love. Now, Coco even experiments with her recipes and I get to be her taste tester!
“If you're looking to modify family recipes for someone with CF, start by looking at the list of ingredients and select alternatives that would be a healthier choice.”
–Maggie, parent of a daughter living with CF
Have you ever adapted a family recipe to help an aspect of Coco’s CF?
Oh yes, I’ve adapted many family recipes… though at first, there was some resistance. For example, instead of using lard in tamales, I used olive oil. Or I swapped out heavy cream for Greek yogurt in this chicken in a creamy chipotle sauce my mom used to make.
When adapting your family’s life to account for CF, have you been able to stay true to your culture and core values? Have you discovered any new core values or ways to connect to your culture as you’ve embraced this new normal?
For sure. I’ve always made sure to stay true to our culture, especially when it comes to family and food. Latino families are naturally close-knit, and that sense of togetherness has been so important in Coco’s journey. And if a challenge arises, we never let it take away from our traditions—we just find ways to adjust them.
Like I mentioned before, one of the biggest ways I’ve stayed connected to our culture is through food and adjusting recipes when needed to make them healthier while preserving the flavor. In our culture, food is so important so changing traditional recipes wasn’t easy for everyone to accept. But, over time, my family has grown to love them. My mom even took a nutrition class to support us.
As for new values, I’ve definitely learned the importance of advocacy and education. I became a strong voice for Coco, while allowing her to have a voice of her own too. Through this, I found a deeper purpose in raising awareness about CF in our community.
Make sure to listen to the full conversation between Maggie and Uncommon Lungs podcast host Julia Rae
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