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Chronic Parenthood

My enlightened “You didn’t ask for it” advice to new parents: Kids don’t come with manuals.

Or, receipts.

*shifty eyes*

Now that I’m entering the busiest several months of my entire year, I took a quick moment to take stock of my perceptions, emotions and realities.

Reality is this: I’m a mother of five, working a job I’d never considered, trying to make shit work in the chaos of my reality while having some quality of life as I do it.

Reality is also this: I fucking hate it, the “Everything”, on the less-than-stellar days.

Life is already hard enough managing the differing range of emotions, issues and activities facing any of my five younglings at any given moment.

Case in point:

I’ve a 19 year old son who has had an addiction struggle and is socially lagging with a side of Generalized Anxiety Disorder (GAD). He is currently navigating the rivers of pharmaceutical assistance and the issues that go along with doing so.

I’ve a 15 year old son who has behavioural difficulties (ODD) which result in verbal abuse thrown my way on erratic occasions…one minute awesome, one minute I want to Homer Simpson his punk ass. Plus, his intermittent “I’m a 15 year old jerkasuarus because my hormones are pretty ridiculous.” awesomeness.

My 9 year old daughter is in the throes of starting to distance herself from old friends as they navigate the drama that is pre-teen-ship. That boat is loaded with pre-pubescent firecrackers. Or, some days, cannon balls. Who knows. It’s like playing Russian Roulette with a sidearm of bling and bedazzlement, spiked with stabby glares of evil death.

I’ve 8 year old twin boys who are enduring the lagging skills that come with their journey through Language Learning Disability (LLD). Thing 1 is still working on comprehension issues while we figure out how to stop a condition in his middle ear (cholesteatoma) from spreading into and eroding the bones in his skull. Oh, and hope it helps his hearing loss.

Thing 2 is still overcome with the internal personalization of the Everything as he journeys through lagging skills in expressive and emotive expression. Things like, “I hate my life.” are prevalent. He also hits himself in the head. He tells me that “My brain doesn’t work.” Then, finding the extra resources to help him. The extra-extra resources. I’ve had to find them the resources to begin with. Issues like these are like rabbits…

Not only are these parenting challenges in and of themselves, but they exist within the reality that I’m fighting a life-threatening disease that has, in recent years, spread to my heart and kidneys. I recently underwent a chemotherapuetic drip (Rituxan, for those who know, as my friend put it, “The Ritz.”) to blow out my B cells. The hope is that over the two scheduled treatments, my B cells will regenerate to the “normal” level…AND STOP. Remember, Lupus is having an overactive immune system…so, no, echinacea is NOT a good thing to consume during cold and flu season. 


I have to wear a lot of different hats on the very same day.

Every. Day.

Every day no matter if I’m feeling “Happy.” or when I’m feeling very less-than-stellar. With chronic disease, the less-than-stellar often trumps the number of “Happy.”

So, what then? How do I manage the plethora of hats and the “Everything.” that is “Me.”??

I sure as shit don’t do it very well, I can assure you. I cry.

A lot.

I don’t know how to properly express my absolute need for self-care, but I take it, anyway.

There are many days I just “don’t want to.” At all. Like, when you go to bed and think, “Today would be a great relief to just not wake up. It’d be an awesome relief from the pain.”

And, I DO wake up. And it’s my responsibility to then decide how on earth to manage this day’s “Everything.”

Parenting is hard.

Parenting with a disease is even harder. There is a lot of guilt associated with my days. The activities I want to see my kids in, but can’t afford because having a full time OUT of the house job is a commitment I simply cannot make. I cannot commit to the time. I cannot pick and choose only some kids to do some things, while others do not.

I have to regularly try to answer questions like, “Why do you hurt all the time?” and my uber-fave, “Are you going to die?”

There are many resources that guide you on how to answer these kinds of non-glittered cannon balls launched at you when you’re at your worst…but they don’t cover the intensity (they could NEVER cover the intensity) of the guilt a parent feels when, no matter the honest  answer, the look on your child’s face of “Sad.”

Burns a hole through your very soul.

I’ve adapted, as parents do. Or, should. I’ve come up with a few things I can still do with them when I’m having a less-than-stellar. Insta-family-movie-night is a good go-to.

Board games is another.

When my brain AND body are cooperating, we go to the field and throw a football or kick a soccer ball. That kind of thing. Science experiment kits for birthdays, or craft kits…are great to do not just for rainy days, but also for the less-than-stellars.

I’m exhausted, people. Truly, soul-hole kind of exhausted.

I don’t look forward to feeling like this today, tomorrow or the days after.

I do, however, keep on keepin’ on within the best of my abilities.

I do the best that I can with what I’ve been given, but by the gods I still “Do.”

Sometimes, it’s with a handful of M&M’s while watching a Cosmos show with a box of tissues. \m/








Capture the fun's to short for serious \m/
Capture the fun times…life’s to short for serious \m/

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