“There's a 25 percent chance your baby will have cystic fibrosis,” the doctor told us.
To the medical professionals, the discussion that followed was all about percentages and our “options;” but to us, the news was purposeful. It was not coincidence but divine: Out of thousands of our reproductive cells, two would join, carrying this specific gene.
This is our dream for our daughter -- that she comes to know she was created purposefully, that she is a divine masterpiece. Everyone's life has some kind of plot twist. It makes for a good story. And our daughter, Eden, has a great story. CF is just a part of it.
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Another critical element of a great story is character development. And boy, have my husband and I been developed! More importantly, we have watched Eden rise to each new challenge. We watched her as a 2-week-old try out her new “steam engine” (nebulizer) and get a chest massage from her respiratory therapist. As a 1-year-old, she “taught” her teddy bear how to properly breathe through the nebulizer. Now, Daddy and I try to choke down two of our own vitamins at the same time because our 2-year-old can swallow five pills at once.
It is amazing to see how much research and new medications have progressed, even since we entered this fight two years ago. Eden started taking lumacaftor/ivacaftor (Orkambi®) shortly after it was approved for her age group, and we have seen her gastrointestinal discomfort gradually decrease. Our curious little one asks what these little packets of white powder are and ends up gulping them down with a little bit of sherbet. In the midst of these challenges, Eden is still our happy and strong toddler, and we hope that throughout the future, she only becomes stronger and happier.
When I first learned that Eden had CF, my fear was that I would watch my daughter suffer and there would be nothing I could do about it. I quickly learned that as her parents, we are her biggest advocates, supporters, and teachers. Her Daddy and I can teach her how to be brave by being brave ourselves, knowing that without fear, there is no bravery.
We can teach her how to handle more than she thinks she can handle, how to find humor and strength in her rigorous routine, how important it is to exercise and take time to rest, and how to love others.
Our dreams for Eden are the same as they would be if she did not have cystic fibrosis. We want her to pursue whatever she desires -- an education, a career, a family. Her plot twist right now is cystic fibrosis. Who knows what it will be in the future, but hopefully, it won't be CF.
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