How Cushing’s disease has made me a better parent
My experience has helped me better care for my daughter
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When I was pregnant, I received numerous comments about how Cushing’s disease might affect my parenting ability. Mostly, they focused on how my mobility aids and fatigue might keep me from caring for my daughter. These were major oversteps and obvious examples of ableism. But now that my daughter is here, I have noticed that my history with chronic illness has affected parenthood — but not in the way people might think.
My daughter was born at 27 weeks and had to spend over two months in the neonatal intensive care unit (NICU). The doctors would rotate weekly, which sometimes led to conflicting ideas about her care. I had to quickly learn a lot about premature babies and form an opinion on things like fortifying feeds (adding calories to breast milk), respiratory support, and temperature control.
I’ve had to learn how to advocate for myself because of Cushing’s disease, and this experience came in handy in the NICU. I’ve learned not to back down, how to ask the right questions, and how to communicate needs without getting emotional. I hate that this is the case, but I tend to be labeled “anxious” if I’m emotional while advocating. Unfortunately, I’m treated much better when I’m calm.
I was very proud of my ability to advocate for my girl, and I actually helped other NICU moms advocate as well.
Appointments
Because my daughter was born prematurely, we’ve had a lot of follow-ups with specialists, including ophthalmologists, cardiologists, physical therapists, and dietitians. We’re mostly ensuring she gets to where she needs to be, but it’s still a lot to manage. Before Cushing’s disease, this might have crushed me. Now, I have a clear calendar, all of her appointments for the next six months are scheduled, and I am personally in touch with every single specialist to communicate her needs.
I’m grateful that Cushing’s disease taught me to manage appointments, testing, and medications. Without this experience, I’d be drowning.
Symptoms
Ironically, some of my symptoms have helped as well. My insomnia is flaring up, but this works out since I have to do overnight feedings with my daughter. My thin skin requires a lot of extra care, and so does my daughter’s, so whenever I care for mine, I care for hers. I’ve even aligned the timing of our medications so that we can take them together.
Flexibility and empathy
Most importantly, I believe Cushing’s disease has made me more empathetic and flexible. Having to change something last minute because I need to fix my daughter’s oxygen tank? No problem, I’ve changed plans a thousand times. My daughter cried for two hours straight? I get it, I’ve cried that much, too. We snuggle and figure it out together.
Cushing’s disease is part of who I am. And, as shocking as it might be to those who questioned my pregnancy, it makes me a stronger and better parent.
You can also follow my journey on TikTok and YouTube.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.
FRANK
GREAT ARTICLE