The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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My son who has cystic fibrosis required extensive treatment as a toddler, which I believe had a traumatic effect on his mental health. With the help of therapy, I have helped him learn how to self-advocate and use coping strategies for his anxiety, starting when he was just 4 years old.
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It's difficult to manage cystic fibrosis self-care when you have a child with a disability. Don't pressure yourself to be like other moms. Just do the best you can. Your kids will value your efforts.
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Being on coronavirus lockdown has taught me to lower my expectations and be grateful for being able to be with my family.
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I am both excited and scared that my son will be old enough to try Trikafta when he turns 12 later this year. In some ways, I can hardly wait to see how he will benefit. But I also know that he might experience side effects, and I don't want him to have any setbacks.
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The impact of cystic fibrosis on a parent and child relationship is both unique and everchanging. As I've grown into adulthood, my mother and I have learned new ways of talking about this illness and have seen more clearly how it affected us in the past. Now, more than ever, I'm learning a large part of being cared for is caring for those who have cared for me.
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Learning to loosen the reins a little as my daughter has become an independent teen has been challenging, but any fears I feel have been tempered by watching her grow as a human being.
