Invisible Illness – Stuck in the Middle with You

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.

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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.

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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.

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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.

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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.

“Stuck In The Middle With You”
(originally by Stealers Wheel)

…Yes, I’m stuck in the middle with you,
And I’m wondering what it is I should do
It’s so hard to keep this smile from my face,
Losing control, and I’m all over the place
Clowns to left of me, jokers to the right,
Here I am, stuck in the middle with you…

Reality – tough to swallow

I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.

Except this one – not so much.

wheelchair

It was a purchase made out of necessity, not desire.  It sat in my online shopping cart for 2 months before I hit send last night.  It will arrive some day next week.  It leaves me with mixed emotions.

Gratitude, that it is not a full time arrangement.

Anger that it has to be part of our lives at all.

Frustration for my energetic girl who would rather run, than walk.  And would love to do both without pain and bone-crushing fatigue.

Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.

Guilt, that my child can walk and so many others can not.

energy to be normal

My beautiful girl, as you know by now, has suffered with health issues her whole life.  They have ranged in severity, but they have been consistently problematic.  The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.

Research is scarce.  The cancer risks associated with our PTEN mutation are real, and documented.  But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.

I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.

There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.

There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.

And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.

There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.

There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.

The lipoma on her back was almost certainly Cowden’s related.

And the biopsies.  The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.

But the chronic pain?  The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?

And the physical therapy that is a necessary part of her existence – just to function.

What about the migraines – now well controlled, but not gone?

And I sometimes wonder why she is a bit absent minded?  Shame on me.  It’s undoubtedly necessary for her to survive.  Imagine if she thought of all that every day, and all her daily activities?  She would lose that magical smile.  And I don’t want that.

happiness is

The frustration is as palpable as the largest nodule in her neck.  She WANTS to do EVERYTHING the other kids can do.  She wants to run, and play, and participate with them.  She is TIRED of being different.  She is TIRED.

Swimming is a good idea, but it takes so much out of her.  Last night’s practice got in the way of tonight’s. School was tough.  Clammy, hot flashes, uncomfortable.  Maybe she’s coming down with something, but more than likely she’s just wiped out.

Three practices a week was the plan.  Two became the goal.  This week it was one.  But somehow its worth it, for her to be able to say she is on a team.  To be able to say she swims competitively.  To feel somewhat “normal.”

When she was younger I could hide things from her.  Now she’s just too smart.

When she was younger I could convince her all the kids get tired.  I could deflect her attempts to play too hard.

When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.

When she was younger…

But she’s older now.  Wise beyond her years.  And I have been where she is, and I hated it.  She has it worse, and I know she hates it too.

She can swim – pretty fast.  Just not too often.

She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.

She can play outside for a bit – but not too long.

She can walk too.  Until the pain in her legs, or her hip, or her knee wipes her out.  Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.

I am grateful.  You bet.  And sad too.  And I think it’s OK to be both.

She spent a few years in a MacLaren push chair when the walking was extra long.  Now SHE is extra long – adult sized at 10.  Time for adult sized reality.

swim overcome

SO if you happen to run into us when she needs that wheelchair, just smile and say hello.

We will remember to be grateful we don’t need the wheelchair full-time.

When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.

Invisible Illness

For the last 6 nights my soon to be 10 year- old has slept in between her father and I.

Now I will pause to give you time to gasp, as wave your fingers at me.

I will give you time to self-righteously proclaim that you “know better” than to put your child in your bed, because once you start “that habit” you will never be able to break it.

Go ahead.  Tell me its my own fault that I don’t sleep as comfortably as I could with my 5 foot tall 85 pound child bouncing between clinging to my husband and I.

Tell me I should just send her back to her own bed.

And then – when you are done.  Come over.  Please.  I will even make you some coffee – but you will have to settle for fake milk.  No need to keep any in a house where a child has a dairy allergy.

When you come over you can watch her for a few minutes.  I will let you watch as she winces in pain, and cries out as she bounces around.  And that, that is after she actually gets to sleep.

invisible illness

See before she gets to sleep, there is pain.  Always some pain.  Always.  But some nights, or weeks like this one, it is worse than normal.

There are nights, and plenty of them that she sleeps in her own bed.  Right through until as late as we will let her.  Those are the nights the pain is at its best.

Then there are the nights she needs one of us to rub her in her bed.  A knee, a calf, and ankle, an elbow, a shoulder, a wrist, or even a head is keeping her up.  Sure, you could say she is exaggerating.  Maybe she is acting like any kid who doesn’t want to go to sleep.  But Meghan is above many things, a really rotten liar.  So, when she hurts – she lets us know.  And when she doesn’t it never comes up – end of story.

The worst nights are the ones like this week.  The ones where she can’t even get herself comfortable in her own bed.  These are the nights she cries not only for the pain, but also for the raw fatigue that keeps her awake when she would rather sleep.

This week there has been pain.  Pain in the legs as she adjusts to swim practice, or plays with a friend or two at a play date.  There has been pain in the wrist, the pesky wrist injured now since early June.  The one that has to have a problem – we just don’t know what it is – yet.  The wrist in line for an MRI/MRA has a pulse to it that is reminiscent of the AVM  in her knee.  But we are trying not to jump the gun.

If you ever do stop by my house in the middle of the night, to see why none of us have any semblance of a normal sleeping pattern, maybe you can bring a warm compress, or strong hands, and help as we massage cramping, painful body parts.

Even on the days we fall hard!

No one knows the Meghan of 2 AM.

Everyone sees the bright smiley face.

Everyone sees the interpersonal child who talks with everyone – who makes them laugh.

Everyone sees the reader, the friend, the kid who likes quiet, and order, and rules, and helping people in need.

The Meghan of 2, or 3 AM disappears with the morning light.  She washes her face, brushes her teeth, and puts on the best smile she can to prepare to face the world.

This is the story of life with chronic, invisible illness.

energy to be normal

No one knows about the growths on her thyroid, or the insufferable hot flashes she has.

No one knows about the effort it takes her to walk up the stairs, or to sit and play with friends.

No one knows she is slated for 2 more MRIs, a pituitary function test and a pelvic sonogram – and that’s just the next 2 weeks.

No one knows because she doesn’t “look sick.”

And she wouldn’t have it any other way.

She wears her denim ribbon necklace, the one crafted after the Global Genes Project logo – every single day.  And she dreams of the day she will look across a room at another little girl wearing one too.

The denim ribbon is the symbol for rare and genetic disorders, and since identifying her own need to have a “symbol” to wear, like my pink ribbon, she saw to it that one was created to be worn around her neck.  She chose to have it modeled off the Global Genes Project- an organization that spoke to her heart soon after our Cowden’s Syndrome diagnosis.

We wear them now, my husband, and Meghan, and I – united in our battle.  And we hope that one day there will be more.

circle of three

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!"
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

Next month we will travel to Disney World, as we have for the last 6 years.  While we are there Meghan will use a wheelchair.

Recently, when the controversy hit about the misuse of Guest Assistance Passes at Disney, I was sick to my stomach.

You see I have a child with a virtually invisible disability.  She can walk, by the grace of God.  She can swim.  She can function throughout a day – often with insufferable pain at night.

But what she can not do is walk for long distances.  Ever.  Regardless of the footwear – no matter how hard we try to prepare.  She just can’t.

We took her out of soccer because of the impact.  We took her out of dance for the same reason.  Now she swims, and even with that sometimes the muscle pain is difficult to bear.

So it is especially tricky for us at a park that necessitates walking and standing.  Sometimes she can stretch her legs.  Usually she can cover about a half mile on foot.  Then she needs to rest.  If she pushes too  hard on day 1, by day 4 we might as well be back home.

She spent her birthday one year in tears, pleading with me – in the middle of EPCOT that she would go home “RIGHT NOW IF YOU COULD MAKE THE PAIN STOP.”  That was the day after we let her walk 50% of the day before.

She hates being confined.  She would rather walk.  She looks like she should be walking.  But she can’t be.  Bottom line.

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So as I said earlier, those of you who want to judge me for rubbing my child’s sore and aching body so she can rest – feel free.  As long as we breathe she will be able to seek comfort in the arms of her mother and father.

And when you see me pushing her around Walt Disney World, I know there are the lowlives out there who abuse the policy, but before you assume that my “normal looking” child is one of them, ask yourself if you have ever met anyone with an invisible illness.

Ask yourself how many children, when given the opportunity, would rather navigate the happiest place on earth from the confines of a chair.  Sure we all need a rest some time.  But she’d rather have it on a bench.  And while we are at it – she would rather be having an ice cream cone like the other kids too.

Just because I teach my child to go through life with her head held high.  Just because I teach her to push through pain.  Just because I teach her to smile at adversity and to be kind to judgmental strangers- that doesn’t mean she doesn’t hurt.  None of that invalidates the 4 surgeries for the AVM in her knee, the thyroid biopsies, the constant scans, the issues yet to be uncovered.

My child knows patience.  She knows how to wait.  And she does it all year at countless doctors, and invasive lab tests, with grace, and poise and dignity.

So, before you forget what invisible illness looks like- look here.  We are too busy BEATING COWDEN’S to acknowledge the judgmental.  We teach our daughter to love and forgive.  She has too much stress in her life to harbor any anger.  We learn our best qualities from her.

you were given this life