Losing Count…

In school I count children.  Religiously.  Especially in September.  I count them in, and out.

I count pencils, to pacify my OCD.  12 to a table.

I count days until appointments, special occasions, and vacations.  I love numbers.

I have a tendency to remember addresses, phone numbers, anniversaries and dates.

So it’s a really big deal in my mind when I realize I am losing count of Meghan’s surgical procedures.

counting

I keep a list in my bag, that I update often.  I have a 16 gig flash drive with a history spanning 12 years in that same ziploc bag in my purse.  But, this year.  Well, this year has been a little more wild than usual.

And every time I say it, I find the old saying, “You ain’t seen nothing yet..” coming true.  But, every year I sit at an IEP meeting talking about discontinuing some services, and we always say, “When she goes a year with no surgery…”

Good thing I’m not holding my breath.

See I wrote, and I think I blogged, TWICE in the last week, that the hand surgery was Meghan’s 13th surgery.  Except it wasn’t.  It was the 14th.

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And maybe, when I lose count, it’s time to stop counting.  Because they are all starting to blur together.

2004- Epigastric hernia surgery

2007 –  Gall Bladder Removed

2008 Tonsils and adenoids removed

2008 Back mass lipoma

2009 Oral “fibrous polyp”

2009 Embolization (internal) AVM right knee

2010 Embolization (internal)  AVM right knee

2011 Direct Stick Embolization AVM right knee

2012 Direct Stick Embolization AVM right knee

2013 excision of mass from right palm

2014 complete thyroidectomy

Nov. 2014 emergency (direct stick) embolization AVM right knee

May 2015 Arthroscopic Surgery – Right knee

August 2015 Excision of vascular lesion from left palm

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But, just as I think I should stop counting.  Just as I think that this is “normal,” or that these procedures are somehow “minor,” I realize the ridiculous nature of that train of thought.

THIS IS NOT NORMAL.  THIS IS COWDEN’S SYNDROME.  And, BEATINGCOWDENS is what we do, but it is far from NORMAL!

This week, Meghan had a fever blister break out before her surgery.  Maybe nerves, maybe coincidence, maybe a medication screw up.  Whatever.  It reminded me again, that her body is taxed.  It is tired.  I have been hunting through past blood work, another plan in place to try to deal with chronically low IgG levels.

She spent the 48 hours after the “minor” hand surgery with high fever and frightening headaches.

We had to postpone the follow-up to the “real” 13th surgery Thursday morning because she could not get into the car.

No surgery is minor.  And we run the risk of confusing things we are used to with things that are not significant.  And that is a dangerous road.

It is so important to keep validated, as an adolescent or as an adult.  When we trivialize procedures, intentionally or not, we invalidate the patient.  Cowden’s Syndrome patients will undergo insane numbers of procedures, surgeries, hospitalizations and testing in their lives.  They all matter.  Because we matter.  And while we are forever grateful every time a surgery is smooth, benign, and uncomplicated, we are all a little more rattled than we were before.

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So LOSING COUNT, is not acceptable.  It somehow trivializes the nature of what goes on here.

We didn’t get to the beach this summer.  We did get to Disney.  Thank goodness.  Because pretty much everything else we did involved traffic, a co-pay and a parking garage.

We are blessed.  We are grateful.  We are in tune to the tragedies and horrors around us.  But, sometimes it gets lonely.

We miss barbeques and parties.  We cancel at the last-minute.  We rarely socialize.  It’s not because we don’t want to.  It’s because things change so quickly we can not keep up.  And then it looks like we don’t want to.  But, it’s just not true.

We are eternally grateful to the people who reach out.  Just for a minute. Because it matters.

If you’re reading this because you know someone with Cowden’s or a similar syndrome, my advice to you is reach out.  Text.  Call.  Email.  It’s not about money, or grand gestures.  It’s the 5 minutes you spend that will truly aid in the recovery process.

Because recovery is essential.  Number 15 is just around the corner.  And even though that’s a “regular” surgery, I bet not many of us have had our wisdom teeth extracted at the age of 12.

It’s physical.

It’s mental.

It’s emotional.

It does not stop.

BEATINGCOWDENS

 

 

4 thoughts on “Losing Count…

  1. I do that – blisters!! i think with me its a reaction to something eg tapes. Never had fever with them though. Meg you and your Mumma are constantly on my mind xxx

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