How I Knew My Baby Has Cystic Fibrosis

I was scrolling through social media last night when a photo of a beautiful baby caught my attention. She had impossibly large blue eyes that stared deeply into the camera. She was gorgeous. The post was in a large online parenting group and it was accompanied by a caption written by the baby's mother about how devastated she was. She had just been told that her baby has Cystic Fibrosis. She wondered what kind of life her daughter could expect to have now that she was diagnosed with this horrible disease.

Below the post there were dozens of comments. Other mothers had written messages expressing their sympathy. A few told her, "God never gives you more than you can handle." Many of them said things about how sad it was and how beautiful her baby was.

As I read the responses, I began to feel upset and at first I couldn't quite figure out why I was having this reaction. Yes, this mother has every reason to feel overwhelmed and upset by her baby's diagnosis and perhaps it was helpful for her to read all of those supportive messages.

Then I realized why the whole thread bothered me so much: no one had mentioned anything specific about Cystic Fibrosis. No one had told this new mother that maybe things weren't as bad as she thought they might be.

I'm guessing this is because none of them had any direct experience with the disease. I don't have Cystic Fibrosis. I don't know what it's like to live with it every day and I don't know what it's like to be the parent of a child with CF. But I still felt like I needed to give this mother a hopeful message because I really don't believe that being diagnosed with CF is a death sentence.

As I began to compose my response, I found myself writing about my best friend of over twenty years. My best friend has been living, no, thriving with Cystic Fibrosis since she about the same age as the baby in the picture. She is now a 32-year-old woman. She has a bachelor's degree and works full time and is in a graduate program for creative writing. She is engaged to be married this summer and currently she and her fiancé are building their dream house. They are even hoping to start a family.

Like this little baby, my best friend is beautiful. She has big blue eyes. And she is tall and skinny. Everywhere we go together; I notice how people stare at her and flirt with her. You would never know that she does her treatments four times a day or that she has spent a significant portion of the past year living in the hospital. My best friend is strong and she is a fighter. She doesn't need your pity.

Sometimes I think about what my best friend would be like without her disease and I just can't imagine it. It is such a part of who she has always been and the person that she has become. It is impossible to separate her from it. Even though CF makes her life hard, it has also shaped her and made her such into this amazing person.

When I was pregnant with my second child, my husband and I opted to get genetic testing. My best friend asked me, "What if you find out that the baby has CF? Will that change anything?"

Her question surprised me. It had never even crossed my mind that a positive test for CF would make us feel any differently about this child. "Of course not," I assured her, "How could it when I know you?"

To the mother who just found out her baby has Cystic Fibrosis: I want to tell you that even though your daughter has this disease, she can still do anything anyone else can, she can still have a full life. She can still fulfill her dreams. She is still beautiful.

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Britta Eberle lives in rural Vermont with her husband and two young kids in an old farm-house that they renovated themselves. More of her writing can be found at her blog, This Is Motherhood. You can also follow her on Facebook, Twitter, and Instagram.

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How I Knew My Baby Has Cystic Fibrosis

Source: https://www.cflf.org/blog/parents-who-just-found-out-their-baby-has-cystic-fibrosis