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  • Writer's pictureLexie

What Does The Kid Think About Your Chronic Illness?

Throughout the chronic illness journey we tend to question a lot of things… well, at least I surely do.

I mean anywhere from “will we ever get better?”, to “how we can still find purpose in this life?”… if you know, YOU KNOW.

“Am I a good parent?” has been top on my list of questions for some time.

Some of the first concerns I had back in 2012 were not being able to coach the soccer team my child was on, being unable to drive to chess team meets, or volunteering through his school as I always had and enjoyed so much!

Then, traditions changed and this hit home hard!

Christmas cookies were no longer possible to make and this completely broke my heart.

Every year we would do gingerbread houses (some for an organization in our small town and one with the young kids in our family) and it was both of our favorite time of year… but I digress…

Now at the ripe age of 17, the kid had a project assigned through his schooling recently. He was to pick an organization that he saw the need to “support” and find a way to contribute to it.

He chose The C Spot!

Imagine just how happy I was … still holding back those happy tears…

As we discussed what information he could provide for education or support, we decided to do an interview styled video for the Podcast YouTube channel, “A Hard Pill To Swallow”.

As he is my child, his tone can come off a bit blunt at times, but very honest and very real.

But real is what a lot of us are in search of, right?

We want those answers from our loved ones that we have been struggling to ask, but we also want the truth.

Am I a burden?

Do you wish you had a healthier parent?

Are you missing out on exciting parts of life because of me (the parent) and my chronic illness?

Yes… I am aware of how this could have been setting me up for an emotional rollercoaster, but we need to have these difficult discussions.

And besides, if it went terribly wrong, I could just delete the video, the channel, shut down the LLC … okay, clearly it didn’t, so let’s move on…

During this interview I had 5 AMAZING take aways.

  1. He is my child and genetics do not lie.

  2. I worried about several feelings that I assumed he had. How annoying! I never want someone to assume my feelings, so why would I do that to him? Lesson learned. I should have just simply asked.

  3. During the early portion of my chronic illness journey it was suggested to me to not be honest about my condition. I think this is awful advice. Yes, keeping it age appropriate is important, I agree. But I can tell you that being open and honest about any upcoming procedures or surgeries has actually eased his mind. It almost prepared him mentally for what was going to happen and essentially what could have happened.

  4. All of the moments I thought we were “missing out on” were opportunities. It really made us more creative in the way we planned our special days. We also cherish the good days more than I think a lot of others do. For example, if you take your children out to eat every week it becomes a part of the routine. When you can only go out to eat once a month because you’ve been flaring, that one time becomes a whole event. This has really helped me as a whole person by just learning to live in the present moment like it is the last one we will ever have… don’t worry, I won’t go dark here.

  5. My self confidence, or lack there of, has become apparent to my household. I dislike this. When we are raising teenagers I feel like it is important to show them the ways that they can love themselves and THIS part of the interview got me. Chronic illness has really taken a toll on my love fr myself and apparently, it shows. Something I need to work on…

Now keep in mind that this is one kid, one chronic illness (well… you know, a few), one parenting style, and one interview from a 17 year old.

OF COURSE this is not by any means suggesting that there is a right or wrong way to live with a chronic illness or parent someone while having one.

Please, please, please do not think this is a judgement piece.

Personally, I find it helpful when we share real-life experiences because I am a firm believer in the fact that we can always learn.

Am I perfect? Ha… I mean… I am close…

Okay, all kidding aside, there would have been several things I would have improved upon while the kid was growing up.

Regrets? Oh, I’ve got them.

But that guilt that some of us live with from not being the healthiest and happiest parent? That has to go.

That guilt hung around for YEARS for me. It even caused me to question my credentials as a parent… yes, seriously.

I held myself to such a high standard and thought this kid needed the soccer mom coach and the home made cookies to the classroom on Fridays.

I listened to other’s opinions of me and took it to heart despite them not knowing what I was actually going through.

Do you know what actually mattered?

That the kid felt loved and safe.

I know, it’s that simple… said no parent ever.

When you break down parenting there are many parts we can dissect, but at the end of each day when that kiddo lays down in his/her bed and feels safe and loved… I mean, isn’t that the most important part?

And yes, there are times when that kid slept in my bed with me because of chronic illness flares.

Maybe it doesn’t seem perfect right now and maybe your children have already grown up and moved out and you question their childhood?

Whatever the case may be, you have to remember that you did the very best you could with the information you had at the time.

I think from this interview I will be changing a few things up in my home.

More of those movie nights. More time spent on asking about how he feels instead of assuming. More time just living in the moment.

How about you? Did you find anything completely shocking? Are there any tips/tricks you have learned along the way?

Please share them! Like I said, we are all just learning from one another.

Oh! And the courage to do this project with him? Ive actually been listening to a VERY good podcast from VeryHappystories if you want to check it out!

It’s not an affiliate link, I just absolutely love her!

I thank you for spending your non-flaring time with us today and hope it is a better kind of day for you!

If you have any topics you would like covered on the AHPTS YouTube, let me know via email or in a comment on the video.

I look forward to us sharing our stories and learning from one another!

Hope you have a better kind of day today!

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