• USACFA

How Mom Dealt with my CF Diagnosis (Part II)

By Sonya Ostensen


Click here to read Part I.


6. Did you face any adversity with people regarding your child’s CF?

PM: Sometimes we would get stares when the coughing occurred, but most were very understanding. I educated my family and friends, so they knew the challenge. Usually, once someone was educated about the disease, they were supportive.


7. What are you most proud of regarding yourself as a parent?

PM: I am proud that I did not make my daughter feel different and encouraged her to live life to the fullest, which she has done and continues to do. Sometimes her adventures gave me a few gray hairs, but I loved to see her explore.


SO: During college, there was a study abroad program in Cuernavaca, Mexico I had decided to pursue. I am pretty sure mom had her reservations, but she never let on at the time. I ended up with a lung exacerbation in Mexico due to the horrendous air quality and the stress of traveling. However, I obstinately decided to stick it out for the last six weeks of the program in order to keep the credits. Mom heard it in my voice on one of our phone chats and decided to come to Mexico, as she put it, “just for a visit.” I knew she was checking up on me. Armed with a limited Spanish vocabulary (baño (bathroom), agua (H20), and, of course, cerveza (beer)), she flew into Mexico City and I took a bus to meet her. It was the best—I did not realize how homesick I was until I saw her. My friends and I laughed so hard and had a blast with my mom. Anyone who has met this woman can testify that she will fit in wherever and with whomever. She is fun and often more energetic than I have ever been. Of course, she tried to persuade me to come home. I refused and convinced her it would be ok. It was a dangerous gamble; to say I am stubborn would be an understatement. Yes, I did check into the hospital upon returning home. However, I am not sure I would have weathered the trip without mom’s visit. My friends and I were all very homesick and my mother gave us the extra courage we needed to finish the program.


8. How did your daughter give you a hard time regarding living with /treating CF?

PM: The hardest part was making sure she had her medications and took them. She never let it stand in her way. She is my shining star.


SO: I can remember being frustrated with having to take the time to do my nebulizer treatments. I was a teenager and had more important things to do! It was early in the disease and the lung infections were not too frequent. Mom was sternly telling me to do my treatments else I was not allowed to go to my friend’s house. I yelled back at her, something to the effect of “You should have never had me! I’m sick of this!” She just laughed; I mean there is no response to such a silly comment. That is one moment I wish I could take back, even though she does not remember it.


9. Did things change in your mindset/parenting goals/perspectives, etc. as new treatments and medications evolved over the years with CF?

PM: I always knew that the scientists were working on new medication and treatments to give my daughter a better life. I just always prayed it would be in time. The new modulator (Trikafta) is now giving her a better quality of life.


10. Looking back with what you know now, would you change anything as far as your parenting, etc.?

PM: I always think I could have done things better, maybe different. Life gives everyone twists and turns and I guess we just must roll with it and make the best of everything.


SO: Honestly, my mom has always and still does give 110%! She was a single parent working full time, going to college, and leading a girl scout troop all while dealing with my CF. My mom is my rock. I can always count on her to be there even in my darkest moments.


11. What advice do you have for parents facing a new CF diagnosis of their child/children?

PM: My best advice is treating your child like nothing is wrong, so they do not feel different. Keep the faith and let your child live life to the fullest. No one knows what the future will bring. The next step is a final cure so keep the faith!


SO: My Mother never coddled me. Regardless of CF, she let me go into the world unabated to explore and make my own mistakes. I knew I was never alone—she was always there to sit or talk with me when I fell. Parenting is really one of the most challenging and rewarding positions in life. The love is easy, balance is necessary, and a massive amount of patience is pertinent for this role. Adding a chronic illness into the mix increases the stamina needed to be a parent.


Doing this interview with my mom stirred up memories that both brought out sappy tears and made us laugh. While we have had our differences, she has helped me become the person I am today. She has fostered my independence and made me realize I can pursue my passions despite CF. My Mother has taught me that to be a good parent is to show up. Thank you, mom! I love you from the bottom of my heart!

About the Author: Sonya Ostensen is 45 years old with CF and resides in Melbourne, Florida with her husband and daughter. She received her BS in Environmental Sustainable Resource Management from The Ohio State University. After working in environmental health, she retired due to CF complications. She loves to travel with her family and experience new cultures with a passion for wildlife rehabilitation. Her favorite activities include gardening, baking, walking the beach, and especially climbing trees with her beautiful daughter. Sonya currently serves on the board of directors for USACFA. You can contact her via email: sostensen@usacfa.org.

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