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Reflecting on life with cystic fibrosis

July 26, 2019, 21:30 2217 Author: Olha Vovk, translated by Konon Pankratovich www.deti.zp.ua Natasha Onufrievas reports on frank discussions with her daughter Alice about life with cystic fibrosis.

Alice and I were sitting and contemplating. Yes, cystic fibrosis is bad—very, very bad. It is tough, difficult, painful, and sometimes stokes ongoing depression. But you can find some good out of it.

First of all, there are new friends who understand you better. Mothers understand and support mothers; and children, one another. It’s like a tribe.

Thanks to or probably because of this, our children are the most harmoniously developed, in academics, sports, and arts. Practically everyone, to the best of his abilities and peculiarities, leads an active lifestyle and can serve as an example to peers who are instead engrossed in electronics.

Our girls are graceful and slender, and mothers try to get them to add even one more kilogram.

Travel opportunities - if that’s what one can call those trips to new cities and new hospitals. During these trips we see not only hospitals, but take strolls to see beautiful architecture and different places, meet new acquaintances who were previously unknown. They also help, support, and advise; furthermore, they become friends and members of your tribe.

But Alice noted that a hospital admission is a sort of a vacation. Nonetheless, she strives not to combine hospital stays and holidays. Each must be in its own time.

You come to understand the saying "The world is no good without good people" in a new way. Sometimes it seems that the world around you consists only of kind, sympathetic, and caring people. Thank you so much for this!

Yes, cystic fibrosis is bad, very bad. It is hard, painful, scary, difficult, sometimes unbearable. But we must always keep our hopes up, striving with great difficulty against heavy odds. We are thankful to all of you who are nearby and who are always with us. Alice and I are very grateful to you for your care and support.

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