The Roller Coaster of Life with a Chronically Ill Parent

The Roller Coaster of Life with a Chronically Ill Parent

September 1, 2016 | Posted in: Parenting and Chronic Illness

Growing up is a roller coaster, and living with a parent with a chronic illness is another loop and turn to add to that roller coaster.

My stepmom has an illness that is a major disadvantage to her way of living. Having this illness creates bumps in the road, but we can always get over them. There are some drawbacks to factor in. Like, we cannot do some of the fun things we wish to do. If we wanted to do them we’d have to do them without her, which isn’t as fun. Some days she is too sick to go places with the rest of our family. Some days she can barely get out of bed!

Most of the time my dad has to cook dinner, and my stepmom can’t eat much because her head is killing her and she wants to go back into her room where everything is okay.

This isn’t how she’s supposed to live her life. She’s supposed to go out with her friends and enjoy the weekend instead of being in bed. She’s supposed to look at pretty sunsets instead of injecting medicine that helps the sickness go away.

I still remember the day when she got the sickness, though it probably needed time to develop into a sickness, but it was just a small tick on the back of her leg. We were in a corn maze somewhere; my stepbrother and I were running around and having fun, of course. I remember the big bins of corn and we just played in it. Later, my stepmom was pointing to a type of bullseye mark on the back of her leg. We found out then, but it wasn’t obvious, that that was the source from which her sickness came.

Although I was young when I met my stepmom, I still barely remember a time when she was not sick. Click To Tweet

And someone getting sick like this seems like a distant dream; more like a nightmare of some sort. Not a lot of people get sick; it’s not a thing you’d expect for such a nice person like my stepmom. Maybe you’d hope for something bad to happen to somebody who cut you in line, or maybe someone who accidentally scratched your car.

But God just made this whole thing happen on purpose. Maybe at the time it seemed like everything was falling apart, but as the known saying, the pieces were just falling into place.

I’m sure if she wasn’t so sick and always in bed we could bond more and do more things together.

I remember maybe a year or so ago when I’d come home, I would see her maybe once or twice the whole weekend. Even now when I come home, I don’t see her that often. I’m sure it must be difficult, but she has used the time to write these blogs and help the community of sick people. I know that God has so much in store for these people, and you. ­

I’m so happy that she’s found people to reach out to and who she can relate to. This is a group of people that are really something special! God has really given them another outlook to life and a different way of living; even though it’s not the preferred way of living.

I have learned a lot about this sickness. Before I didn’t even know you could get sick from a simple bug! To any other teens or adults that are living with someone like this: Offer up your time and pray.

Pray that that person is not in pain, and pray that they find peace in whatever they do.

Julie Philpot is fifteen years old.  She likes cats and to drink coffee. She likes to play the piano and sing as a hobby:) She loves Doctor Who!

The Roller Coaster of Life With a Chronically Ill Parent


*A disclaimer- Julie is the most amazing stepdaughter there ever was. I can say this with confidence because she is my stepdaughter. The edits I made to her piece were extremely minimal because I wanted her to tell her story. However, I actually obtained the “bulls-eye” rash before we ever met. I’ve been slowly getting sicker the entire time she’s known me. Because I also have CVID (I don’t make enough antibodies to fight off infection or disease on my own and thus borrow them from healthy folks on a monthly basis) Lyme was able to get a real foothold before we ever knew what it was. It also came with its usual friends like Bartonella and Babesia. By the time we knew about Lyme, I’d already sprouted a little RA as well which further complicated things.

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