Day: July 29, 2015

I don’t actually fit the “stereotype” of a middle child, as I was a younger sibling to my sister, (three years older) for 15 years, before my little sister and brother came along a few months apart.

I got the live the life of a “younger” and then later got to have some fun times, and responsibility as an “older.”

It worked.

On the other hand, this journey with this “invisible illness” we call “Cowden’s Syndrome” isn’t quite as smooth.  It has to work, but right now it’s the “typical” middle child.  It’s having a tough time fitting in where it belongs.  Actually it is definitively trying to take over, but either getting ignored, or getting too much attention for all the wrong things.

In February of 2014 there was the complete removal of her thyroid.

In May of 2014 there was a week in the hospital from complications from the medicine that was controlling the AVM.

In November of 2014, almost on schedule, the AVM bled and required emergency surgery.

In February 2015 I addressed another vein gone awry in my leg.

In May 2015 there was the arthroscopy for the AVM knee to quartarize some bleeding.

In August, on the 25th, there will be her second-hand surgery in two years to try to stay ahead of the vascular malformations now forming in her palms.  That was an unintended result of Monday’s visit to the hand surgeon.

There are a list of appointments to make, and bills to settle, and I seem to be doing nothing more than surviving.

More blood tomorrow.  An Abdominal ultrasound Friday.

The summer is not for carefree adventures.  The summer is for doctors.  I hate that.  But, its true.

And as we met with the oral surgeon today who perused her multiple page medical history, his cavalier remark, “She looks good,” should have pleased me.  But, if I may be frank, it pissed me off.

Not because she doesn’t look good.  She’s stunning, and tall and polite and well-mannered, and has a beautiful smile.  But that is NOT the point.

The point is he never mentioned anything about the medical history, and in our world, being validated matters.  Someone needs to say its unusual (read unfair) for an (almost) 12-year-old to be discussing the removal of her wisdom teeth.  And while this may have nothing to do with Cowden’s (although I’ve come to know EVERYTHING unusual has SOMETHING to do with Cowden’s,) it is still just grossly unfair.  More unfair is that this is ALREADY her second stint in the chair of an oral surgeon, as a mass was removed from her gums some 5 years ago.

We remain “stuck in the middle.”

Again, I have the “healthiest looking sick kid.”

My kid who still ices her knee, and needs to walk a lap or two during swim practice, but still makes practice.  That kid will spend a week in a wheelchair at Disney, as she is not to walk more than about 1/2 mile consecutively.  The child who still hasn’t gotten clearance from her last knee surgery.  Clearly, she doesn’t “look” sick, but the stares and judgment are inevitable.  And to some extent I get it.  Invisible illness is hard to understand.

It is during this week I feel most “stuck in the middle.”  I am so grateful the accessibility issues are limited.  I do not fit in with the parents of wheelchair bound children.  Although, it is a necessary tool to allow us a much-needed vacation.  But, what is not limited are the “invisible” elements of her condition.  The chronic surgeries, the doctor visits, the traffic, the blood work, the scans, the inability to just “go”; to the museum, the beach, the park, or anywhere because it hurts to walk too long, the isolation from friends who have no limitations, the poking, the anxiety – well, they never ever go away.

We’ve learned not to talk about them much.  But, they are always there.  Hers and mine.

She learns to appreciate what she can do, and acknowledge what she can’t.  Begrudgingly.

My kid who holds it together through all things, and has grit and determination I marvel at, will act in her summer production at school.

She learns to use the anxiety as a tool.

She masters her emotions.  She is the boss of her body.  She amazes me.

And on September 18th when she gets her bottom two wisdom teeth removed, the course of action will be no different.

They will never know the powerhouse of a young lady that just left their chair.  Until she comes back for the other two a few months later.