“Hey, I follow you on Facebook…”

There we were in the back of DSW looking for a pair (or two for accuracy sake) to fit the feet of my girl for “Aunt Em” in her school’s performance of “The Wizard of Oz” next week, and a woman approached us.  She was happy, and friendly, and it seemed excited to see us.  Meghan and I had never seen her before in our lives.  But, she seemed to know an awful lot about us.

dorothy and aunt em

“Hey, I follow you on Facebook!.  I am amazed by your story.  And you guys stay so positive all the time.  Such an inspiration!”

I’m not sure either of us knew quite what to do, so we smiled politely and said our thank yous.

Then we looked at each other.

Did someone just recognize us?  Like we matter?  A complete stranger?  Wild.

There are times I write, or we write, and I feel it is simply a therapeutic output into cyberspace.  Yet, we receive messages, some from all over the world, confirming our story is getting out there.  We know all about digital footprints.  But Wednesday, well we finally saw our own – face to face.  In the shoe store.

Why do we tell our story?  Why do we keep at it through the mundane and the heart-stopping?  Meghan says, because the truth needs to be there.  When someone looks, they need to find real people like us, getting by, every day.

owning-our-story-web

I guess she’s right.  She often is, although I don’t make a practice of TELLING her that…

Spring Break 2016

It sounds almost funny to say it.  But, we are ALMOST used to it. See, there ARE no breaks.  There just aren’t.

Doctors appointments take time.  On average 4 hours roundtrip to Manhattan considering wait time and traffic.  I have work.  Meghan has school.  We miss more than we should of each.  Routine appointments are for days off.  That’s how it has to be.  But, then you add in a flu-like virus from who knows where, and you insert about 3 extra visits to the pediatrician, on top of a cardiologist, just to be safe, well by the time you get to the routine sono of the thyroid bed (where the gland was removed to check for regrowth,) and the dermatologist, and the endocrinologist, and the traffic, and the very fair school project…  There is just about enough time to switch a closet or two, wash a few windows, and about HALF the curtains you intended to, while sneaking in one LONG trip to the grocery store.

We spent the early part of the break watching a few movies on Amazon Prime.  This is a real treat for Meghan because I am ROTTEN at sitting still.

Ferris Bueller

And somewhere in between “Ferris Beuller” and “Annie” we grabbed a few lessons.

Annie

From “It’s a Hard Knock Life…”

“Don’t if feel like the wind is always howling?
Don’t it seem like there’s never any light?
Once a day, don’t you wanna throw the towel in?
It’s easier than puttin’ up a fight..”

Sometimes when I come into the house I love, instead of feeling calm and relaxed, my heart starts to race.  I think of the papers, and the phone calls, and the bills, and the scheduling, and the terror of missing something, and the compulsion to keep up with the basics, and I just want to sit on the floor and cry.  Sometimes I even do.  Sometimes I even get grumpy for a while.  Then, usually when no one is watching I’ll grab a dog and rub a belly, or do something silly to try to shake off the enormity of it all.

I remind myself it’s about every little piece.  It’s about one day at a time.  It’s about counting the days with no headache instead of always the days with knee and hip pain.  It’s about looking at the pile, neatening it up.  Making a list, and leaving it there to go for a walk.  Some days I get it better than others, but I’m a work in progress.

Yesterday, we did well with the pediatrician.  He drew some more labs, but feels she’ll be well enough for full activity Monday.  The dermatologist, routine Cowden’s Screen, was without incident too.

Today, the new endocrinologist (only our second visit) proved himself to be a wonderful addition to the team I am so desperately trying to form for Meghan.  I DREAM of the day I get them all together, assign a captain and let THEM help me.  But, for now, he is bright, inquisitive, and willing to toss out the “rules” when he treats Meghan.  So the hormone that we had to ditch, the medicine that was out to save the uterus that now has to save itself, well that medicine can mess with T3 Uptake, one of the thyroid hormones.  Meghan has a hard time converting T4 (Synthroid) into T3, so we actually supplement with T3.  Most doctors have no idea.  He said lets raise it and check her in 2 weeks.  Works for me.  Feeling like a validated human is priceless because this child is so exhausted all the time, it’s just not ok.

He scanned that thyroid sonogram report, reassured us about a renegade “reactive node,” and moved it to the “watch list.”

The next few weeks are set to be a whirlwind.  I can only pray her body is up for the task.  Lots of good, and happy things on the agenda.

It’s a busy life.  I wanted to see some people this week.  I wanted to reconnect with at least one friend.  I know they are out there.  And yet again, the week didn’t allow me any advance planning.  Can’t expect people to wait around for me.  So my music and my computer keep me company, with the laundry and the dishwasher, while Felix and Meghan celebrate at a Sweet 16.  It’s good for them to get out together sometimes too.

#Beatingcowdens

requires focus, stamina, and its own brand of mental toughness.

We’ve got this.

 

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