Welcome to Mortality

You know how people always say that they wish children came with a handbook, like a big How to Successfully Raise Your Particular Child, in Precise Terms kind of a book? 

Maybe everyone doesn’t say it, but I have been known to say it. Because it would be REALLY NICE  to simply follow an owner’s manual at times, instead of blindly trying and failing in various parenting techniques.

Anyway, it would be so great. And that’s for a typical kid.

Jack is not a typical kid. 

I really, really need his instruction manual. 

Just for a reference, at the bare minimum. I would consult it about “Where to find the right services” when the current services start falling through. I’d read up on “The meds that will consistently work the best for Jack, including doses,” and I would memorize the section on “How to discipline Jack when he really needs disciplining, without setting him off on a rampage of violence and destruction.”

There is no manual, though. 

And the person who suggests to me that we do have a parenting manual, called The Scriptures, can back away slowly before I throw an iPad at their head.

We are in a pretty good place with Jack and Charlie at this moment. Don’t tell the universe that, because it might decide to throw a hot slippery mess at us if it thinks we are basically doing okay. But even in this pretty good place, it’s still ugly and floppy and endless.

Weekends continue to be long and difficult. Our house continues to sustain constant damage from the wrecking crew. Neither Dutch nor I is getting enough sleep or exercise. Driving in cars with our boys remains a precarious, yet necessary, endeavor.

I will occasionally drop into the trough of a wave on this ocean, and feel pretty angry about all of it. I’m not there now, though. 

My current ailment is more like a low-grade fever with intermittent aches and chills. I’m basically functioning, but I’m weary and run down. (Side note: I sort of hate writing about this stuff because I fear it comes across as me being a) whiney or b) in the business of soliciting sympathy.) (Other side note: I don’t want sympathy, but I do like to occasionally whine.)

Anyway, the crux of this post is that there are no easy answers. 

There is no Jack Almanac or Reader’s Digest Version of How to Raise a Person with Serious Intellectual Disabilities. There is prayer, yes. I KNOW. 

There is the psychiatrist and behaviorist and pediatrician and ENT and pediatric gastroenterologist. And they help. They do. There are books and resources, but they tend to paint with a broad brush and not always apply to the big issues that are ruling our lives. 

It’s all a crap shoot, because you can’t really change a person just because you want them to change. Some things won’t ever change, at least not until the next life.

Anyone who tells you otherwise is trying to sell you something. “The Princess Bride” knows, guys.

So I’ll end with my current favorite phrase, the one I find myself tacking onto the ends of lots of things, like essays and conversations because it applies so very, very aptly so much of the time:

Welcome to mortality.

[drops mic]

  6 comments for “Welcome to Mortality

  1. Emily
    September 6, 2015 at 10:48 pm

    I laughed out loud at the iPad throwing. Love you, friend. xx

  2. Blue
    September 6, 2015 at 10:50 pm

    i love that last line…
    i take solace at times in the promise by Joseph Smith Jr:

    “All your losses will be made up to you in the resurrection, provided you continue faithful. By the vision of the Almighty I have seen it.”

    Not much consolation when you’re in the trough with the waves crushing you; when the sky is dark and pours the rain. The only thing you can do is what you’re already doing…approaching life with such an amazing attitude and sense of faith and hope and just holding on by the skin of your teeth when it’s bleak. You constantly inspire me.

    YMMV but this song helps me in the hard moments. Maybe it’ll help you too. love you my beautiful friend!


  3. September 6, 2015 at 11:26 pm

    I laughed at the iPad (and other spots) out loud as well. I’m sorry you are weary. But whine away. And your reality is always comforting for some reason. Probably because of your amazing personality and attitude. But geez lady – let’s figure out how you can have a spa day or hour or something. xo

  4. September 7, 2015 at 2:38 pm

    Yep, mortality. I can relate to your lack of sleep, friend. Currently, I am feeling very mortal, but at least I’m not nauseated!

  5. Sarah
    September 8, 2015 at 11:58 am

    Whine, whine away, my dear. I’ll listen (or read, as the case may be).

  6. Archie
    September 11, 2015 at 9:24 am

    “And the person who suggests to me that we do have a parenting manual, called The Scriptures, can back away slowly before I throw an iPad at their head.”

    Love it!

    You can whine/shout/scream/curse all you need… no judgements here.

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