My son, who is Black, has cystic fibrosis. It seems like just a normal fact of life, but I have become frustrated with having to convince doctors that he really does have CF. I hope that one day people of color won’t have to have the same experience.
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As my daughter became a teenager, it was difficult for me at first to let her manage the responsibilities of her cystic fibrosis care on her own. It took going to see a therapist for me to wrap my head around the fact that it wasn’t my place to nag her about doing her treatments anymore.
We knew nothing about cystic fibrosis when my first daughter was born with the disease. We quickly became experts and took on the responsibility of educating our friends and family about what our daughter needed to stay healthy and thrive.
Art has been my therapy throughout my life, but it took on new meaning when I had a daughter with cystic fibrosis. Now creating artwork helps carry me through the stress of CF life.
Just like there isn’t always a right (or one) answer to parenting, parenting two kids with CF has shown me that I need to just do the best I can for my family as we navigate my family’s constantly changing needs.
Hospice care helped my daughter, Desirée, through her final days.
I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.