Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.
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After being the primary caregiver to my son for so long, I was surprised by the many emotions that came with his transition to adulthood. But I’ve learned these complicated feelings are just an opportunity for us to grow closer.
I thought I was well-prepared to have my third baby boy, but when Oliver was diagnosed with CF, everything I knew went out the window. Though the journey has been isolating at times, my family has found our new normal with support from others in the CF community.
We couldn’t wait to take our daughter home from the hospital. But when the time finally came to bring my daughter home, I began to lose confidence in myself as I tried handling all the medications and formula. With time, I built a great routine for my family and learned some tips and tricks to share with other new parents.
My wife and I opted for a surrogate to carry our child following her double-lung transplant. After five years of struggling with a bad surrogacy agency, we finally switched providers and found a surrogate who is now carrying our child.
I was not emotionally prepared the first time I saw my daughter in her vest. But now, I am thankful to have this device as a part of our daily routine to keep her lungs healthy.
Accepting my son’s cystic fibrosis diagnosis has been a year-long journey for our family. I learned there is more to motherhood with a chronically ill child than meets the eye.