Parenting With CF Through Tough Stages

No doubt, parenting has its ups and downs. It seems to ebb and flow from the greatest joy, to the most draining physical and mental responsibilities a person can have. Some days it’s just down right tough. Whether you are struggling with the physical or mental demands or parenting, feeling overwhelmed from time to time is normal. No one ever said parenting was easy, especially with CF,  but the overwhelming love and bond with your baby makes it feel like the greatest job in the world even when the going gets tough.

Being a parent with CF

Being a parent with a chronic illness adds an additional layer of “tough” to manage and work through. CF can make parenting feel more physically demanding due to the physical symptoms like coughing, fatigue, maintaining weight, and GI issues. In addition, there’s also a large mental burden to take into account managing the logistics of a complex chronic illness on top of parenthood. For example, it takes time to make insurance calls, fill prescriptions, and secure child care for frequent medical appointments. Time that doesn’t come easy when you have little kids running around needing care and attention. Being a parent with CF means mastering a delicate balance of multi-tasking, sacrifice, while paying enough attention to your own health to survive it all.

The tough stage to top all stages

In my own parenting journey, I have realized that one of these particularly “tough” stages comes towards the end of my child’s first year of life. During this stage, kids aren’t really toddlers yet, but they also are no longer helpless immobile babies. They are a different kind of "in-between". The adjectives busy, curious, and fast come to mind. Also, exhausting. So exhausting. Chasing around a soon-to-be toddler all day really can unravel a person to their core. However, don't lose hope! There’s ways to adapt and cope through tough stages in order to remain healthy. In end, remember this too shall pass and you’ll be onto the next exciting milestone in no time.

Parenting through physical pain

Particularly, the stage when a child is mobile but not yet able to get from point A to point B independently is a really difficult stage for me. Babies are heavy at this point, usually around 20 lbs or more. That’s a lot of weight to be carrying around, manipulating into car seats, and lifting up and down. It takes a lot of energy (and oxygen) to do that all day. With my boys, I have noticed how achy and tired my body gets around this stage. My chronic pain also gets worse from the physical strain. Some days, it’s down right tough, but you learn to adapt and accommodate.

Some ways to help parent while in pain include:

• Use a stroller as much as you can
• Practice proper body mechanics like lifting with your knees
• Contact your CF team develop a plan to manage pain
• Let others help carry children
• Use pain relief patches for pain relief on the go

Low energy tips

One of the hardest parts about parenting with CF is the lack of control over the low-energy days. Children aren't obliged by their parents' feelings of fatigue or low energy. It’s just not in their natures to stop exploring and learning because mommy was up all night coughing. Some days you have to push through and get creative to make it to bedtime. Some of my favorite low-energy tips include:

• Create a “SOS basket” that includes special occasion toys
• Spend time reading books, watch a movie, or create art
• Buckle baby into stroller and take a slow and relaxing walk
• Go on a drive together and listen to your favorite music or story
• Plan a picnic on a blanket with toys and snacks

Bottom line: we all have our days as parents that really push us to the limits. CF or not, you're doing an amazing job at such an important (and difficult job)!

Are you a parent with or without CF?  What tips do you have during those tough stages? Share with us below!