Why Parents Are Key Members of Their Children’s CF Care Teams

As a mom to two children with cystic fibrosis, I know what works best for them and can identify the subtle signs of how they are feeling before anyone else. This makes me a valuable member of our CF care team.

| 4 min read
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Jenn Sanders
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I spend day after day administering insulin shots, enzymes, nasal rinses and vitamins, followed by helping with breathing treatments, inhalers, more medications, feeding tube prep and hookup. Oh, and let's not forget the planning involved to ensure they have adequate nutrition and stay hydrated. When the kids get sick, add in an extended, isolating hospital stay, and it feels as though my Herculean efforts to keep them healthy are simply not enough. It is exhausting both physically and mentally.

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Despite doing everything in my power, there have been many times when I left the clinic feeling absolutely defeated as a mom. If my kids lose weight or just don't gain enough, their pulmonary function tests (PFTs) drop down. If they have any kind of cough or infection, I tend to take it very personally. After all, it is my responsibility to make sure that their daily treatments are done.

I remember being particularly disappointed in myself after my teenage daughter had gone through a severe episode of depression during which she lost nearly 4 pounds. At her next clinic visit, the dietitian talked with me for 30 minutes about what I could be doing “better” to help her put the weight back on. Although I knew it wasn't the dietitian's intent, this discussion made me feel like a complete failure. Logically, I know that I'm doing my best, but somehow guilt seems to poison my thoughts and play on my fears.

After nearly 16 years of battling CF alongside two of my children, I have learned that no two people with CF seem to have the same complications and, as a result, CF is challenging to treat. I am not a doctor, but I do know my children better than anyone else and am typically the first to detect when something is wrong. I've learned to tell the difference between a dry and a wet cough. I know that when they are sick, their eyes seem glossy and they look more pale. I found very early on that if we turned on America's Funniest Home Videos during breathing treatments, our kids would laugh so hard they'd start coughing … a perfect way to help them bring up gunk without it being such a chore. I know when my kids' energy levels start to drop, and when they aren't eating as well, they spend longer in the bathroom, their mood changes or their cough starts sounding abnormal (even if it's not yet a full-blown infection).

Sometimes these are subtle changes, but as their mom I know when something isn't right, even if I can't always explain exactly what is wrong. I believe that drawing on this intimate knowledge -- combined with the care team's medical expertise -- would help all of us treat our children with CF more effectively.

Despite the fact that my fears as a mother can lead me to blame myself when my kids experience problems, I've realized how important it is for me to tell the CF nurses, doctors, dietitians and respiratory therapists on my care team when something isn't right.

As the person standing in the trenches with my children every day, I've learned that even little things that seem like they don't matter actually can. And to the other parents out there doing your best, day in and day out, keep it up. Although it can sometimes be frustrating, the knowledge you have as a parent is invaluable and sharing it can help you work with your care team to give your child the best possible CF care.

Remember, your child with CF needs you most of all.

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.

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Topics
Parents & Guardians | Care Team
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Jenn is a single mother of four children between the ages of 10 to 18, two of whom have cystic fibrosis. A Colorado native, she is currently a wedding and portrait photographer living in Denver and manages a studio in Littleton. Jenn and her children are ambassadors for the Make-A-Wish Foundation and Give Kids the World Village. In her spare time, Jenn enjoys mountain biking, reading, cooking, and family movie nights.

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