Despite my knowledge of cystic fibrosis, I was scared when my son was diagnosed with the disease. I already had a toddler and worried how I would balance her needs with his medical care. Now that he is a year old, I realize my fears were worse than reality.
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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.
At first, it was easy to get my son to do his cystic fibrosis treatments. But as he got older, he started to hide his medications, rather than take them. I finally learned how to get him to see the importance of taking his medications.
Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
For a new parent of a child with cystic fibrosis, it can be an enormous help to speak to other parents in the same situation. The support and shared knowledge offered by another mother made a huge impact on me when my newborn son was diagnosed with CF.
I never let my diagnosis of cystic fibrosis deter me from my dream of becoming a mother. I persevered despite the naysayers and, today, I have a beautiful son.
I was heartbroken when I learned my baby would be born with cystic fibrosis. However, my son's CF care team changed my perspective and connected me with other mothers of children with CF who became lifelines of support for me.
We've only lived with our daughter Louisa's CF diagnosis for six months. Besides adjusting to her treatments and care needs, our priority has also been to talk openly about this new normal with Louisa's older brother -- in ways a 3-year-old can understand.