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How Do You Parent When Chronically Ill?

Today I am so pleased to have Erin of Bambini Travel guest post on Sunshine Whispers. Erin lives with Cystic Fibrosis and today she is giving us a peek into how she parents twin preschoolers while suffering from a chronic illness. 

parent when chronically ill

Parenting When Chronically Ill

I hate the term chronically ill because for me it conjures up an image of nursing homes and bed pans. This is supremely unfair and inaccurate but nevertheless makes me cringe. For lack of a better term, however, I would be characterized as a chronically ill parent. My chronic health issues are time consuming to manage and since I have four year old twins who are equally time consuming, I frequently get asked how I manage to do it all.

Quite frankly, I don’t.

I am of the opinion that no one can “do it all.” There are only a certain number of hours in the day and while a certain amount of organization might make it possible to do more with these hours, no one accomplishes it all.

Modern moms are particularly hard on themselves in this area. We have this absurd idea that we should be able to cook amazing meals, spend time with our children, read books, grow a beautiful garden, sew our own clothes, clean the house, look perfect, exercise daily, make time for ourselves and somehow get some sleep. I suppose if this is your daily goal then the idea of adding weekly doctor appointments, a ridiculous medicine regiment, and frequent sick days to the equation seems impossible. The trouble with this is that the bar was already set too high.

I do not do it all.

There are moments when I feel bad about failing to spend more time with my kids or self-conscious about my devotion to a ponytail and jeans or embarrassed by my lack of cooking skills, but most of the time I don’t.

There are limited hours in the day and that means you need to make choices. There are two things I have on my agenda each day. One, things I have to do to stay as healthy as possible. These include exercise, medicine, doctor appointments, sleep, and drinking lots of water. The desire to survive as long as possible is hugely motivating on all fronts. Two, ensure that my children are healthy and loved. They need my time, my attention, food to eat, opportunities for play and more. When I start to get stressed or overwhelmed by what I think I should be doing, I remind myself that those two things are the only things I truly have to do.

That is all I have to do today.

parent when chronically ill

This isn’t to say that I spend every day in my sweats on the couch drinking water and hugging my kids. I promise you most days I do not. It is just to say that if I don’t feel good or I don’t get everything on my list done that is okay.

I am an organized sort so I have a cleaning schedule and I make menus of (very simple) meals for us to eat. I plan activities to do with my kids and I schedule field trips and play dates. I take excessive photographs. I carve out time in my day to work on my blog and read a little before bed most nights. These however are largely choices.

I like a clean(ish) house. I like doing things with my kids and going on our mini-adventures. I like to write and read. I like taking pictures. But how do I do that when I’m sick? I don’t.

When I’m sick, I ask my family and friends for extra help. When I’m sick we spend more time at home and repeat old favorite activities instead of dreaming up something new. When I’m sick we spend more time watching tv and doing sitting activities. When I’m sick, we eat more meals from the freezer and toilets don’t get cleaned. And most importantly, I forgive myself for things I don’t get done.

It took a long time for me to learn this. It is hard to forgive yourself and let go. But that is how I survive. I make the best of the good days whenever they come and forgive myself when I have to go lie down.

And do you know what? It all ends up okay. Despite having a mom who isn’t 100% my twins are curious and bright. They are patient and kind. They have amazing play skills and excellent vocabularies. They don’t notice that we ate chicken nuggets twice last week or that I haven’t cleaned the bathroom. At the end of every day I am still here and my kids are happy and healthy. Those two goals are achieved.

And that is all I needed to do today.

parenting while chronically ill

Erin Buhr is a freelance writer, early childhood educator, and mama with Cystic Fibrosis. She is currently enjoying the extra sunshine in the Deep South with the love of her life and their four year old twins. She writes about family travel, children’s books, and preschool activities on her blog Bambini Travel.

You can follow Erin on Pinterest, Facebook, Twitter, and Instagram (her IG feed is amazing).

Also, check out some of Erin’s great parenting posts!

Why Children Need to Play Everyday

How to Introduce a Baby to Water

How to Survive the Early Years With Twins



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24+ Easy Activities to Save Your Next Sick Day – Bambini Travel

Saturday 30th of April 2022

[…] read also: how to parent when chronically ill […]

Joy Healy

Friday 5th of February 2016

Great insights. WE could all use a simple focus and thereby enrich our lives.

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