How I Got My Mom to See Me as an Adult in Charge of My Own CF Care

Here's my experience with that awkward moment when you have to tell that one person who has always been there for you your whole life that they need to just let go a little bit.  

| 5 min read
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Wendy Caroline
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Transitioning into adulthood is a hard game to play and comes with many challenges. One of the hardest and trickiest of these challenges is gaining independence -- especially when you have cystic fibrosis. As many of you know, CF takes an immense amount of treatment and effort. This often means that we grow up without a lot of independence. Not only are we dependent on our CF treatments, but we are also dependent on our parents to care for us.

It is no secret that CF moms are notorious for their love and passion for keeping their kids with CF healthy. My mom was no different. When I was small, she used to sit by my side during every treatment, feed me until I was about to burst and accompany me to each clinic appointment.

Although this worked when I was a kid, this soon became a problem when I started budding into an adult. My mom was so used to speaking for me and knowing the details of my disease that she would forget that I wasn't a kid anymore. All throughout college -- well past when I started considering myself an adult -- she was still accompanying me to clinic until finally I had “the last straw.”

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My parents and me at my college graduation.

 

I had a particularly rough summer and was feeling miserable. You know it's bad when someone as stubborn as myself actually makes an appointment instead of waiting for my scheduled one. I arranged all the details of my life, including time off from work, so that I could be admitted into the hospital after the appointment.

Long story short, my mom, my grandma, my sister, my boyfriend, my niece, my doctor and I were all, for various reasons, in this tiny exam room. It's no surprise that my voice was completely gone. Everyone had decided that I should be taking a treatment route that I knew was not the answer for me: oral antibiotics.

I knew my body well enough to know that the antibiotics were just going to draw out how I was feeling and screw up all of the life arrangements I had spent the whole previous week making. I left the appointment brimming with tears of frustration, trying my hardest not to let them fall and show my mom any ounce of ungratefulness.

After having a few days to mull things over, I knew that my mom could no longer attend my appointments. I just had no idea how to tell her. No one wants to be the one to tell their mother that they don't need them for such a large part of their life anymore, but I knew I had to do something.

The next morning, I called my CF clinic. I had no idea where to turn and hoped they had dealt with this situation before. I explained how I felt, feeling my tears beginning to well up again. Funnily enough, they felt the same way. In a sense, that made it easier. They walked me through different ways that I could explain to my mom that I was an adult and should be taking charge of my CF care. I had never really thought of my CF clinic as a social resource before -- only medical.

After having the day to think about the different scripts my CF clinic had to offer and rehearsing my own versions, I gave my mom a ring. The butterflies in my stomach ... I seriously thought I was going to puke.

The conversation went much smoother than I was expecting. Yes, she cried. That's pretty much inevitable with her and probably most moms. However, she listened to me and respected my voice and opinion. She ultimately understood that it was time, and probably past time, to let go just a little more.

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My boyfriend and I taking on CF clinic on our own.

 

Because my parent's house is basically on the way home from my CF clinic, I suggested that my boyfriend and I would stop by for dinner on my way home after my evening appointments. Now, I can tell them all about my clinic visit during dinner in a way that is warm and welcoming instead of stressful.

To all the CF moms (and parents) out there, you are incredible people. You are some of the strongest and most caring people in the world. But just like there is a time to let your child venture out into the real world, there is a time to let them venture out into the adult CF world … on their own. I understand that it's scary, if not totally terrifying. But we manage, we learn and then, we succeed.

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My family supporting me at Great Strides.
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Wendy is a young adult with CF who is finding her way in the world. She is a passionate writer and advocate for CF awareness, and is currently training her service dog, Finn, for when she needs a little extra support throughout the day. In her free time, Wendy enjoys music, traveling, and reading, and credits her CF for giving her more drive to love life and all it has to offer.  Follow Wendy on her blog, The Living, Breathing Wendy.

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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.