There have been a few moments over the past four years that have provided us with perfect opportunities to give both of our kids a fuller understanding of the multifaceted nature of cystic fibrosis.
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When our son was diagnosed with CF, the clinic director sat with me for hours answering my questions. Since that day, I have wanted to bottle up his advice and become a voice of encouragement for new CF parents.
Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones.
When I was diagnosed with CF at 22, I was relieved. I could start treating the disease we'd been trying to identify for years. But after the initial excitement, I started facing issues of denial, anger and confusion…so I ran.
The road to rebuilding shattered dreams is not a straight one.
The radio stations are filled with holiday music, but as 2015 comes to a close, I find myself listening to an entirely different playlist. In my mind, there are not only songs that make me reflect on the path that my family has so carefully traveled so far, but also the hope and the promise of all the good things yet to come.
While my husband and I are learning more about raising a daughter with cystic fibrosis, we don't let the occasional humorous moments pass us by. Being able to laugh about certain things lets us know that we have come a long way.
My daughter loves looking up at the stars, which is perfect because we plan on teaching her to reach for those stars in every moment of her life and not settle for anything less.
As a parent of two kids, I find myself wondering if Anna's CF is changing Jack. Would he feel the same responsibility for her if she didn't have CF?