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The Part You Don't See

There are so many different parts and pieces to living with a progressive disease that gets more and more complicated as the days wear on.

Many of the struggles are visible and if they aren't visible then it's just the readily acceptable fact that disease makes life emotional; the ups and downs rarely need an explanation.

But, there is a side that most people don't see.

They don't see all the day to day things that go undone because I am so mentally spent and physically spread thin.

From last Thursday to Sunday night, my kids ate nothing but Pizza Hut pizza.

We haven't sat down to a meal as a family in 11 days.

The house hasn't been cleaned in, I'm afraid to think how long it's been.

I'm sure I won't have an electric bill this month because the majority of the lights are burnt out.

The windows in my house make every day look cloudy and overcast.

The dog is now refusing to go out to the backyard to do his thing because the grass is at least 6" above his head.

I could go on...but why?   The point is, we may look like we have it all together, but we don't.
When I am not working my tail off, taking kids to the hospital or working my tail off...I sit down and try to figure out what the future is going to look like.

My car is almost 9 years old and expensive things are breaking down.   I looked into buying a used car last week and the reality is, I can't afford even a $200 car payment.  My house is 11 years old and I know the day is coming when the water heater will quit, the furnace will break, the fridge is on it's last leg and million other things are about to die.  I heard today that the HOA where I live will be increasing dues which I already know is going to be more than I can afford and so, as I was duct taping the handle back on to the lawn mower, I wanted to scream!

It's frustrating to say the least.  If I could just get a real job then all this would be much easier but I can't get a real job when someone is always sick and as it is, we are going to the hospital three times a week in a nearby city.  So, instead, I piece together a living that from the outside probably seems not bad but self employment taxes make that impossible.

The struggle is real.  There is so much more to just watching your kids deteriorate before your eyes.  I worry so much about what is going to happen in the future as things get worse and I will have to limit my work even more.

At any rate, today I knew I had to stop everything to 'Sharpen the Saw' as Steven Covey says.

So, after cleaning two houses this morning, I cleaned my own.  I didn't just clean it, I bleached the whole darn thing!  I changed no less than 12 light bulbs.  I took out the trash.  I swathed the lawn in the backyard. I powerwashed all the cobwebs from the outside of the house.  I pulled weeds. I bought some real food.  I filed over three months of business things and household things.  I de-junked a closet.  I cleaned out the car...and then went to my night job.

And...I feel better. Tired.  But better.  At least order is restored and that is half the battle when so many of the days are the antithesis of order.



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