Managing CF, Parenting, and Anxiety

It's difficult to manage cystic fibrosis self-care when you have a child with a disability. Don't pressure yourself to be like other moms. Just do the best you can. Your kids will value your efforts.

July 7, 2020 | 3 min read
Victoria-Greene-Headshot
Victoria Greene
Victoria-Greene-Parenting-Featured-Rectangle

“You have cystic fibrosis.”

Those words will forever haunt me. It was the best, and quite frankly, the worst day of my life. The best because I finally had a name for the illness I had been told for years was just a “low immune system.” The worst because I already had a son with autism and I was wondering how this was going to work. How can I possibly do my day-to-day treatments, have frequent hospitalizations, and attend doctors' appointments all while maintaining his therapies, his school, and his needs in general. With no support system other than my mom and my husband, it was terrifying. 

Victoria-Greene-Parenting-Featured-Rectangle
My son Bentley and me. In a mother’s eyes, her child is perfect.

My son's school is very particular about days missed because he needs the therapies provided there. There are a certain amount of days one is allowed to miss before you get “kicked out” of the therapeutic program. How am I supposed to plan weeks in advance for his therapies when I can't even plan a week in advance for my own appointments because cystic fibrosis is so unpredictable?

Needless to say, it's been a journey. I've had to get used to leaving the kids behind with my mom when I have doctors' appointments or hospitalizations. I've had to be comfortable with trusting my husband or Mom to take over when I'm sick.

It's been a long time coming, but I've finally made peace with the fact that I can still be a good mom even if I'm not able to be present 100 percent of the time.

Then you add in this pandemic. Schools are closed and therapy and doctors' visits are online. We have to up our treatments and be careful with whom we allow in our home. The routine that my son so badly needs/craves, the therapies he relies on to grow and flourish, are on hold. Zoom therapies and doctors' appointments just aren't the same. My daughter also has speech therapies that we have to keep up with, along with weekly class meetings for both of them. It's a lot, it's hard, it's stressful. But, we make do, because we are warriors.

My advice to fellow cystic fibrosis mamas or daddies with special needs kids is this: Don't feel bad for what you can't do for them.

Don't feel bad for what other parents can do for their child. Take pride in the fact that when you are there, you are there wholeheartedly. We are warriors. Although we can't always be the parent we want to be, we are here. We try our best every day. Our best may not be what other standards classify as enough, but for us it is. Our kids will look back one day and say, “My mom/dad went through a rough time, and we're still there. They fought hard and made sure to give me the best life possible.”

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Topics
Parents & Guardians | Emotional Wellness
Victoria-Greene-Headshot

I am a stay-at-home mother to two amazing children, one with autism. My CF journey has been a roller coaster. Although I've been sick my whole life, I was 25 when I was diagnosed. I have a rare unknown gene mutation, so my CF experience has been a unique one to say the least! I've always had a passion for writing. Even as a teenager, I had a blog about my day-to-day life. My CF blog can be found at thisraremama.wordpress.com.

Recent Community Posts
Reclaiming My Identity After Starting Trikafta
Blog | 8 min read
The Impact of Advocacy Beyond the Hill
Blog | 6 min read
Why We Took Our Son Off Trikafta
Blog | 7 min read
You might also be interested in...