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

Power Surges

525,600 minutes….

The song is stuck in my head.

Dates, numbers, zip codes, birthdates, anniversaries.  I think in numbers.  I think that’s why teaching math makes so much sense to me.

I used to balance my checkbook right down to the penny.  Now I use “estimation.”  Sometimes numbers are important, and other times not so much.

Tomorrow is the 16th.  January 16th is the birthday of an old friend, but that wasn’t why the 16 was sticking in my head tonight.  Tomorrow it will be 8 months since my hysterectomy.  Not 6 months, not a year.  Eight months is an odd “anniversary” to remember.

happy hysterecomy

I don’t try to understand why I remember certain things.  I just do.

Although if I have to guess, tonight the hysterectomy is on my mind because I am feeling my age.   (Or perhaps a bit older than my age.)

You see when you have a complete hysterectomy in your late (very late) 30s, Mother Nature has a grand old time, messing with your body and your head.  As the months go by your body finds ways to behave that aren’t quite “right.”

Yippee- you no longer suffer through monthly visits to the local drug store to relieve your misery.  (She was never my “friend” anyway.)  But that may be where the cheering ends.

hysterectomy

Tonight I was sure the thermostats – yes both of them – were broken.  I fiddled with them to get the chill out of the air when I got home from work.  No sooner did I finish the first of the homework with Meghan, and I was removing layers.  I checked the temperature again.  It couldn’t be only 70 degrees.  In my world we were in balmy Orlando in August.

Properly changed into a T shirt, I asked Meghan why she wasn’t sweating in her long sleeve shirt.

“Mom, it’s January.  Are you OK?”

hot flashes2

Yep.  Fine.  Guess the thermostats are fine too.  It’s mine that is a little broken.

Mine is running hot and dry like the Sahara.  Lots of water.  No wine tonight.

The hysterectomy was a good idea.  A necessary step in the “beating Cowden’s” process.  I get it.  I am not sorry I did it.  But really some days I have to say this estrogen withdrawl thing is not for the faint of heart.

I popped one of the migrane pills.  An added joy since the surgery – hormonal migranes.  And the cool thing is (in my most sarcastic typing) that there seems to be NO rhyme or reason to their timing.

4 migranes my entire life before May.   At least 8 since May.

With all the changes my body has been through this year, its a wonder we are still on speaking terms.  I guess when I really think about it – it’s probably Ok that I am running at different speed these days.  Bursts of energy, coupled with bone crushing fatigue…

525,600 minutes… Cowden’s Syndrome has kept us busy. I can only imagine what 2013 has in store.

Now if you’ll excuse me…. I have to go stick my head in the freezer…

power surges

Lessons Learned in 2012

What a year!  Just months after our diagnosis of Cowden’s Syndrome in the fall of 2011, Meghan and I took on 2012 completely unsure what to expect.  As a matter of fact this very week last year, I was anxiously awaiting word on her thyroid biopsy slides that I had had transferred to a new hospital.  Ironic that I sit tonight, waiting to hear when the next thyroid biopsy will be.  The more things change…

In 2012…

I lost the ability to say, “I can’t.”  Instead I gained “Nerves of Steel” attacking this syndrome head on.

I lost my self pity and gained determination watching my daughter start her own awareness campaigns.

I lost my fear of driving on highways and in big cities.  Now I navigate NYC like a (cautious) professional, and even venture to hospitals in NJ and Boston.

I lost my fear of ridiculously large medical bills.   Instead I get to them when I can, knowing in most cases they are fortunately not mine to pay anyway.

I lost about 3 more sizes, and have finally settled into clothes that fit.

I lost my muscle tone, as wild days kept exercising at bay.

I lost sleep, and more of my brown hair to gray as worrying kept me up many nights.

I lost my breasts in a bilateral mastectomy, but replaced them with perky new silicone ones, and with that…

I lost my fear of breast cancer and those ridiculous breast MRIs!

I lost my feeling of loneliness after my surgery when I got to spend a week chatting it up with my Mom.

I lost some of my close friends, who understandably tire of hearing me repeat the same stories without resolution, but I gained an incredible online support “family,” through Facebook, through PTEN world, and through my blog.

I lost that sense that we are alone at this battle against Cowden’s Syndrome, and I gained a deeper appreciation for the friends that call, message, and connect me to organizations like NORD, and the Global Genes Project.

I lost my uterus, and my ovaries, but I was done with them anyway,  and I gained permanent birth control and instant hot flashes!

I lost one of my Grandpas who I know I was so lucky to have for so long, but whose loss is felt deeply.

I lost my old cell phone, and finally traded it in for a “smart” phone.

I lost my old church, for reasons that still break my heart, but my family has been welcomed home at a new church where we are still marveling in God’s mercy and grace.

I lost my negative attitude about Staten Islanders when I watched my friends and neighbors rally to help the victims of “Superstorm Sandy.”

I lost my car in a ridiculous accident, but this week replaced it with a 2013 Hyundai Sonata.

I lost the way I sometimes took my grandparents for granted after Grandma Edith fell this fall.  I always loved them with all my heart, but I will remember how lucky I am each and every day.

Family shot in front of the New Year's Eve Ball.
Family shot in front of the New Year’s Eve Ball.

In 2012 I gained tools I will use every day as I move forward.

I gained…

Determination – that we will beat this!

Focus- on what matters most.

Perspective- that everyone suffers.

Forgiveness- because negativity hurts me more than them.

Gratitude- for the kindness of family, friends, and strangers.

Compassion- as I watched my little girl continuously open her heart to others.

2012 had plenty of hard times, but like my car, it was far from a “total loss.”

Here’s to the lessons to be learned in 2013.

Wishing you all health and happiness!

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