CF Parenting Probs

Some days having a child with Cystic Fibrosis gets to me. Not the fact that my daughter has CF, but on how I am making an impact on Natalie’s life.

I often catch myself doing Natalie’s chores, picking up after her, giving her multiple chances after I have told her to do something and she refuses… the list goes on. Pretty much treating her as if she is a baby sometimes. Yes, apparently I am that mom. The thing is I am only “that mom” with my Natalie.

She is my “Peaches” and I am her “Purple Petunia”

When I stop and think about my parenting actions with her I become conflicted. Should I be irritated at myself or should I just keep on keeping on? I do think I should be preparing her for the future. Is her boss going to give her chance after chance? (Okay, so we all know Natalie will be the boss of herself. She has got her daddy’s blood and I see entrepreneur in her for sure, not to mention she likes to argue everything that she is told to do #stubborn). Am I setting her up for failure? One day she will be off to college and living without her mom and dad 😓 and will have to take care of things herself…. yes, the thought has crossed my mind just to move in with her 😜.

Although folding the clean towels and putting them away only takes less than 20 minutes in a one week period I still struggle with making her do that one and only chore she has. She has Cystic Fibrosis. A disease that takes hours each day to fight. Isn’t that chore enough?!

I also get conflicted with is it fair to her sister that I help her out with her chore and not help her with hers?! Man, parenting can be tough! Luckily, Natalie’s big sister Britney has a soft spot for her sibling and understands how Natalie’s life is different. Usually Britney understands, however she is a teenager…. enough said 🙂

Big sister Britney doing Natalie’s CPT before she was able to wear a vest

A sisters love
There are moments when I look at Natalie and all I am reminded of is the daily battle she faces. I am reminded of the countless hours in the hospital and the doctors offices, the many lab draws, testing, and therapies that have taken place over the years. I am reminded of everything she has had to go through these past 11 years and it breaks my heart. Each day revolves around her disease. She has to wake up early, stay up late, and rush after school to get her treatments in.

Hanging with Dad before getting her PICC line inserted

Darn PICC line lasted 2 days…. now have to stay in the hospital for 7 days. Dad working full time. Mom in graduate school and working full time–yikes!

So yes Natalie, let me clean your dinner plate

Sure Natalie go ahead and leave your backpack on the chair…. even though the mud room is a 5 second walk away 

Of course I will grab your dirty clothes and put them in the laundry room for you

Yes Natalie, I will stop what I am doing to get you whatever you need during your treatments

Oh and while I am at it.. let me just go ahead and set up and then clean up your nebulizer treatments 

—And let me just clarify: Natalie rarely asks me for help. These are all things that I pretty much offer to do for her.

To me, there is no right or wrong here. My goal as a parent is to raise independent, wise, kind, caring, hard working, christian daughters. So, if I am doing that then does the “babying” of my child really matter?! Babying her could hinder the independence, although she is already very independent at her 11 years of age. I definitely will keep this in mind as I continue to raise my children.

Parenting a child with CF is challenging.  I am sure this goes for any child with a disability, a disease etc. Whether Natalie grows up folding those towels or not I think she will be more than okay. I am so lucky to be this girls mother and I am going to continue to cherish every moment I get with her.

This girl lights up my life
I would love to hear from those who have children with chronic illnesses or disabilities and how this has changed your parenting style!

GOD BLESS

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