In 2018 our family welcomed our newest grandchild into the world. She was my youngest daughter's first child and in that moment we knew she was absolutely perfect in every way. Three weeks later our family learned that our sweet Salem was diagnosed with Cystic Fibrosis, a progressive genetic disease that affects the lungs, pancreas, and other organs. We learned this diagnosis would affect literally every aspect of their lives. Salem's upbringing would be much different than anything her mommy and daddy had originally planned. Family vacations to theme parks would be out of the question as would be summer adventures at church youth camps and other outings that we tend to take for granted each and every day.  Trips to the grocery store, travel on airplanes, even something as simple as attending church would no longer be routine.  Days would be filled with learning to count enzymes to assist with food absorption, breathing treatments and chest percussion treatments. Our family had a crash course on all things CF related. Suddenly, the meaning of "it takes a village" had completely new meaning. Raising their daughter did not follow the script that was originally planned by her mommy and daddy but in the rewriting of life plans we have been given the gift of an extraordinary tiny human who is absolutely perfect in every way. Fast forward three years and their little family grows by another absolutely perfect soul, Silas, who also happens to have CF. 

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Our family now contains two of the strongest, most beautiful warriors anyone has ever seen. Both of their names mean peace. Peace is what they have brought to our family in addition to faith and growth and renewed trust in the Lord.  We so often say every moment is a gift but the last five years have shown us just how precious every moment with any of the people we love is a gift. For our family, every laugh is a blessing. Every diaper, snotty nose, breathing treatment, chest percussion therapy time ... every second of every day is a blessing that is not taken for granted. 

 

In these two babies short lives we have seen research develop and medications approved that now give the hope we will be able to love on these littles well into their adult lives and beyond. Their lives will never be "normal" but they will be filled with moments stitched together with love, deep belly laughs, appreciation of gorgeous Texas sunsets and blessings in abundance.

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SaSiFrass is the new name for my page - dedicated to our family's CF Warriors, Salem and Silas. It is my hope that this will bring more awareness of this almost invisible disease that affects so many.  It is my prayer that medication and research develop to discover a cure for Cystic Fibrosis during their lifetime.