The Chronic Illness Parenting Tool Box

She came to me with a pained look on her face gently holding the lower left side of her abdomen.

Just above a whisper she says, “Mommy my stomach hurts so bad”.

Despite the fact that I felt like third degree crap myself, I swiftly jump in to motion. While checking to see if she had a fever I begin to ask questions.

“What does the pain feel like—pins and needles or cramps?”

“Are you feeling nauseous?”

“On a scale from one to ten, what is your pain level?”

With a hint of weakness in her voice she answers my questions the best way that she could. Feeling helpless and incredibly exhausted I did whatever I could with any means I had on hand to ease my baby’s pain. All while thinking chronic illness waits for no man…well in my case—no woman.

Wouldn’t it be great if chronic illness came with a built in pause button?

Time to go grocery shopping but you feel awful? Pause!

You need to get dinner going but you feel like you’ve been bit a dozen times by a semi-truck? Pause!

Your child is sick but you are having a hard time finding the strength to get out of bed? Pause!!

It really would be nice to have a pause button but unfortunately, no such thing exists. Just like there is no instruction manual that is equipped with a troubleshooting section to help you cope with the monkey wrenches that chronic illness tends to throw.

When living with chronic illness, every day that you wake up you is instantly met with challenges; some old, some new, some bearable and some impossibly overwhelming.

Some days you power through like a champ. Some days refuse to treat you kindly and you are seconds away from cracking under the pressure.

As a mom, I am having to learn how to get through the tough days while raising three teenage children. Though I have no instruction manual to offer you to help you get by, I can give you a few tips that I have picked up along the way:

Never let them see you sweat.

Though I want my kids to be aware of, and understand my chronic illness, I don’t want to burden them with my pain. Even though they are just teenagers and their stress levels may not be the same as mine, they still have a lot on their plates to worry about. I want them to focus on what they need to focus on like finishing high school, going to college, securing a great career, and most important getting out of my house! I’m just kidding…kind of.

The point is that my kids are on a need to know basis kind of thing. They are equipped with the basic understanding of what mommy goes through. They know enough to keep them from worrying about what I might not be telling them but not enough so they live in constant fear or anxiety of the future.

It’s ok to give them responsibilities; and it’s ok that you don’t feel guilty for it.

This is something that I’ve struggled with immensely, and still do at times. Being sick is hard enough but trying to balance my family’s world on my shoulders makes it that much harder.

I’m a stay at home mom, or as I like to call it, a Domestic Engineer. I had to give up any aspirations of working outside of the home when I was diagnosed with Congestive Heart Failure. The guilt from not having a job or contributing in the ways I felt I should be to my family, I would try to over compensate with the things I did around the house—though chores were just as hard on me as working outside of the home. I had to realize and keep reminding myself that I have three able bodied teenagers in my house more than capable of picking up some of my slack.

I slowly began designating responsibilities to them and sure enough—I found that the load I was carrying—laundry and otherwise—became much lighter.

The bonus is that they are happy to do the things I have asked of them. Kid’s learn and grow from the responsibilities you give them—even without a chronically ill parent in the mix. Chronic illness or not, you should expect help around the house from your kids and it doesn’t make you a bad parent to require things of them.

When your body tells you to sit down, Listen!

I have missed out on doing a lot of things with my kids because of CHF.

I’ve missed out on school plays, award ceremonies, and recitals because I was too tired or ill to attend. Though I blame chronic illness for most of it, I have to take some responsibility myself. By that I mean, there are times when I know I am pushing my body to the limit but I keep pushing. Times when I know that I need to rest but I tell myself “I’m just going to do one more thing then I’ll rest”.

That one thing always leads to another and another and before I know it, I’ve pushed my body too far. Parenting is a battle, parenting with chronic illness is a war.

I have learned that I cannot win the war if I don’t listen to your body. When suffering from chronic illness you rarely operate at one hundred percent. We can’t control being sick but we can control giving ourselves a fighting chance. Listen to your body.

Parenting is hard, no matter how you slice it—but sometimes, it becomes a little easier with the right tools. If you’re parenting with a chronic illness, you need all the tools you can get so make sure you have a mighty big tool box to keep them all!

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