It’s following me….

Much like the Cowden’s Syndrome that will never go away, that will follow us for all our days, the pile stalks me.  I swear it mocks me.  Sometimes when I am not looking, and other times right in front of me.

In the pile are, well all the things you’d expect in a pile; bills that need paying, junk mail that needs sorting, statements that need shredding, or filing, problems that need phone calls, etc. etc.

The pile used to be in the basement.  But it was dingy down there so my husband bought me a laptop and the pile followed me upstairs.

Since it had no proper home on this floor, it could often be found on the dining room table, or on the counter, or any number of other places.

paper_pile_on_desk

My office has been finished.  A bonus to me after Meghan’s big move upstairs.  I have a big girl desk, and places to put all the things I need to manage our house, our doctors appointments, bills, authorizations, and complaints, and my quest to help others find the path we’ve begun walking towards better health and financial freedom.

Slowly I am beginning to decorate.  The curtains and blinds have arrived.  The printers are hooked up.  The electrician I love neatly hid the wires.

The photo albums from years and years of my continued obsession with printing photos even in this digital age, line the wall.

The closet stores years of teaching materials, too outdated to have in my classroom, but current enough that I need to keep them – just in case.

Leaning on the wall to my right is a photo I took from my Dad’s apartment, just sitting there waiting for me to decide what to do with it,  and as I type I sit in his chair.

And, just to my left, as I work diligently to ignore it, sits the pile.  It found its way right into the new blue room with the gray curtains and white furniture.

I don’t like piles.

Partly because they are messy and out-of-order, and as I have said before, far too much of life is messy and out-of-order for me to have piles on top of it all.

Partly, they worry me, as there has been known to be a bill sitting in one of those piles, or a newspaper with a message that needed reading, or this week’s surprise, notification of a car recall.

Despite how many hours I spend working on making it go away, I am at points close to losing hope.

There are times I feel pulled, and stretched in so many directions, that I am quite sure NONE of them is getting the best me.  Especially if they’ve sent notification of anything via mail – because it may just end up on the pile… and then – who knows?

If you’ve been reading for any stretch of time, hopefully by now you know I am not hopelessly out of touch with reality.

I get that there are many demands on all of our lives that sometimes stand in the way of a neat and orderly home.  I really do get it.  And I am trying to find a place where I can live happily somewhere in between.

I am a happily married Mom of one, who, for the purposes of all after school activities, and weekly medical appointments, is single.  My husband works much farther from home than I do, and his day ends later.  End of story.  The afternoons are all mine.  And they work out just fine.  And unlike many couples, we share what we can, and he being a far better cook, prepares something for us to eat.  Quickly.   Before I head out to whatever has the night tied up.  Whether it’s a doctor’s appointment, or spending some quality time with a relative who isn’t well, or attending a meeting, at my school, or hers – more often than not there seems to be something on the schedule every blessed minute.

Which leaves precious little time for friends, and phone calls, and random get-togethers, and fun.  And well, it explains why the pile – although tame at times, never seems to go away.

Yesterday I listened to a 2 hour webinar for a grant I got for work.  But I didn’t have work.  Since it had to be after school anyway I scheduled it then to be sure I’d fit it in. Then I printed letters, and log-in cards for the computer program for the 32 kids across three classes that will be doing it.  And while I am excited to see their progress, I was not excited to be doing that.  Nope.  Not one bit.

And there was the grocery shopping, and the dusting, and the generalized dog fur removal.

And the list and the questions started going like mad in my head,

  1. The dermatologist – why can’t I get that woman on the phone for the appointment for the three of us?
  2. I better confirm the date for our Rare Disease Day brunch in February before we lose it.
  3. How can I figure out how to set up online payment for that?  I really have to check.
  4. Make the appointment about the car recall ( on a Saturday so I can sit for hours since we only have one car.)
  5. And the car needs an oil change and inspection.
  6. What about that car insurance lady who never called me back – got to get on her
  7. And the pictures from vacation – almost 2 months ago…
  8. The outside of the house needs a day all onto itself
  9. And the dogs need baths, badly
  10. What is the real reason Meghan’s foot X-ray looked like that?
  11. Why is one of her feet over 1/2 inch off in size from the other?
  12. What’s with the new knee pain?
  13. When do we have to bring the swollen knee to the attention of the AVM surgeon who said, “as long as she’s not symptomatic?”  Can she last swim season?
  14. Can she handle this schedule?  I mean without getting sick?  Cause she’s close, and there’s a lot going on, but I don’t want to say no to all this good stuff….
  15. And when, WHEN, WHEN….will I finally visit with some friends?
  16. STOP………

My husband sat down with me on the other chair in the office.  The panic was beginning to escalate.

Take a breath.  You need a break.

A BREAK? HOW CAN I TAKE A BREAK? DO YOU KNOW THERE IS LAUNDRY, AND MEDICINE, AND DUSTING, AND BILL PAYING, AND…..HAVE YOU SEEN THIS PILE?????????????????????????????????????????????????????

pile of paper

Sometimes I find the notion of NOT getting things done maddening.  But, if we are very fortunate, we have a spouse, or a soul mate who balances us perfectly.

He knows I need to step away.  He knows I need to visit some long-lost friends.  He also knows I need to spend lots of time with people who aren’t quite well.  And, he knows I need to spend time with MY family.

So today, we went pumpkin and apple picking.

photo 2

A nice farm, about 45 minutes from home.  Just our speed.  The pumpkins were kind of “placed”  off their vines, but nice all the same.  The apples were fantastic, and the walking was almost reasonable.  For about 20 minutes.

The the pain started to show in the eyes of that beautiful girl who just wants so badly to do what everyone else is doing.  Walking. Repetitive motion.  Fractured foot, bone chip, or something way deeper?   At that point all that mattered was saving the day.  And there was Daddy.  And his cape.  As he bent over and swooped his almost 5 foot 4, 11-year-old onto his 6 foot shoulders.  And they walked like that for an eternity.  Picking apples.  Chatting.  Laughing.

photo 4

 

photo 3

And she got down long enough for us to take a few pictures.

photo 5

Then, as we walked to the car the knee buckled and that was it.  Back up on the shoulders again.

And even in pain as we got into the car after less than two hours, the proclamation that it was ,”FUN!”  Took some of the tension out of my shoulders.

So we stashed our big girl in the cart in Ikea, even as she told us we were breaking the rules.  And we looked at bedroom furniture for the grown ups, and headed back to drop some apples with the great grandparents.

I had a special place in mind for the 4th mum in a set I had bought at Costco, so after taking care of that, and another special visit, we even watched a TV show together.

And you know the best part of it?

The pile is still in exactly the same spot.  While it didn’t magically disappear, it also didn’t live up to my fears of having it take over the room.  I have to get in front of it to shift my focus to the things I enjoy, and I will get there…

Meghan had a nosebleed tonight.  A wicked one from the days of old.  And the knee never did bounce back.  She’s in our room.  Asleep with Felix.  There will be a spot for me once I have cleared my head.

My heart, as a mom, and especially as the mom of a chronically ill child, will never be a place of peace.  But with work, even with the obstacles, Cowden’s will constantly toss – we can be happy, productive citizens.  This Syndrome does NOT own us.  It takes one hell of a wicked set of stamina to stay in front of it, physically, mentally, emotionally, and in a practical sense too, but we’ve got this.

Thursday maybe the ENT will look down at that damaged esophagus and offer up some good news.

Until then, it is our hope that whatever your struggles, and we know you all have many in your hearts, minds, bodies, and spirits, that you are able to find comfort in those you love, and that even if only for a few hours, the “pile” seems a little less insurmountable.

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4 thoughts on “It’s following me….

  1. Phew! You have a lot on your plate and you are doing a great job.

    I know everything is different for your family with Cowsen’s Syndrome, but both my sister and I had different sized feet as kids for a few years. My sister’s were enough different (a whole size) my mom had to buy two pairs of shoes to make a custom pair. By our teen years, they were the same size again.

  2. This week I moved my pile so I didn’t have to look at it all the time. It felt good. I made sure I pulled all the bills out first and paid them. It’s nice to see the wood on the table. The pile is just in a back bedroom, but I just look at it when I am ready. Glad you got out to pumpkinize!

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