When Pigs Fly

Penelope
Penelope

At the very end of school I received this gift from a 4th grade student of mine.  I think it is probably one of my favorite gifts in my 17 years teaching.  Small and delicate, yet tough and determined.  Not much for collecting things, but this was a keeper.

Meghan continues to battle her way through the pain of recovery.  She rests and reads and watches TV to pass the time.  She is tolerating the pain a bit better, although the reality there was a scalpel scraping scar tissue off the ligament and nerve in the center of her palm is not lost on her every few hours as the medication starts to wear off.

The day we came home I explained to her (again) about how Cowden’s Syndrome likes to “overgrow” things.  We talked about “hyper-healing,” and her body’s desire to overproduce cells to try and solve a trauma.  That is a crude explanation of our tumor growth.  That same crude explanation can be used to explain why some Cowden’s patients have a prevalence of scar tissue.  Every time there is a surgery, or an injury the body over works, and sometimes the result can be just as bad as the original problem.

pigs fly

Overcoming impossible odds.  I like the way that sounds.  The overcoming part, that is.

So, we talked about range of motion and the need to keep on moving those fingers so the scar tissue doesn’t form and stiffen things up.  She knows she will need therapy.  She is used to that.  She did not like the thought that her range of motion could be affected permanently if she didn’t move.

With raw determination she wiggles her fingers.  Several times an hour I watch her wince in pain.  No one tells her to.  She just knows she has to, and she doesn’t like the thought of the alternative.

See its all about the swimming.  Her sport.  Her niche.  Her comfort zone.  Nothing will keep her out of the water for long.

The pain exhausts her.  She has circles under her eyes, not from doing much other than being in pain.  But for those of you who live with chronic pain – you know that it wipes you out.  So she sleeps.  13 hours when she can.  Better for the healing I am sure.

When I was dusting this afternoon I came across my friend Penelope Pig, and I thought of how relevant she is.

I thought of all the times in my young life I uttered sarcastically the phrase, “When pigs fly!”

I thought of my arrogance and how little I knew about the important things on life – the things worth fighting for.

I realized in all its ridiculousness, it can  actually be a poignant phrase.

I’m going to let this surgery stand in my way – WHEN PIGS FLY!

I’m going to stop swimming – WHEN PIGS FLY!

It fits for so many things in life.

So many other things on my mind.  So many thoughts all garbled up inside.

Sometimes I feel like we are running on raw nerve, on sheer will and determination.

And guess what – we will give up….

WHEN PIGS FLY!

when_pigs_fly

 

“It’s probably nothing, but…”

don't worry

We are two for two this week.

Monday the orthodontist referred us back to the dentist.  The OVERGROWTH on Meghan’s gum may warrant an evaluation, and possible oral surgery.  But first – to the dentist Thursday.

Tonight, an annual eye doctor exam.  Admittedly we are 3 months late.  There was the hurricane, and then Grandma fell, and then the car accident, and then… it was January 29th.

I knew her eyes were worse.  She told me she couldn’t see the charts in the room.  Her teachers asked when she would have another eye evaluation.

She had gone since kindergarten without a new prescription.

The onset of headaches, correlated with the decline in vision over the last three months makes me uptight.

eye chart

She read 20/50 and 20/70 WITH her glasses on.  I almost threw up.

Cowden’s syndrome and its tumor growth, and general overgrowth potential. can lead to the wildest imagination.

But, my husband’s sisters, Meghan’s paternal aunts, have terrible eyes.  So maybe…

Then they took the picture of her eyes, and compared them to the visit of October 2011.

“Well, maybe my machine is just darker today,” says the doctor.  “But there is some shading on the right eye I think you should have looked at.  It’s probably nothing, but…”

Famous words.  They usually lead to a Cowden’s Syndrome mess.

Not much literature on the retina and Cowden’s, but then again, there aren’t too many of us – relatively speaking.

Who am I to guess.  I am closing in on 40 and just now considering my first pair of reading glasses – right on time.

I keep saying that I will call at work. Then I spend the day doing my best to put out out small fires.

explosion

And all of a sudden its time to go.  Off to another appointment.

Tomorrow I will call the “retinologist.”  Who knew?  Thursday we will see the dentist.

Two glasses of wine tonight, and I feel like I have been beat.  What a day.  Early to bed – no doubt.

“It’s probably nothing, but….”

Just in case I should rest up.

IMG_0423

Anxiety and the Morning Rush Hour

energy to be normalAnd that is how the day began.

Anxiety in full swing before 7 AM.  Never a good sign.  Especially when the panic attack is coming from your 9 year old.

See, I have a problem with this.  And maybe it is where some of my anger comes from.  I don’t have a problem with Meghan.  I am not upset with her, or her anxiety.  I am really just PISSED OFF at the cause of her ceaseless worry.  It is against the balance of nature that a nine year old should have to have this much to be concerned about.  It is absolutely unnatural that I have to soothe her fears while desperately making sure my words don’t form any type of lie.  She is too smart.  And her memory is way too good.

Sometimes, on mornings like this one.  I have precious little to say.  So, I hold her, as my stomach lands somewhere around my ankles, and I have a tremendous desire to (as an online support group friend suggests) lay on the floor and throw a massive fit.

It's not fair - Tink

And while she is crying about the huge overgrowth that on her gums where she lost her last tooth.  I am trying to convince her that maybe, if we brush like the orthodontist said, it will go away.  (“LIAR”  I hear my inner voice scream..)

Once, a few months ago, soon after the braces were on and the gums were flaring in the full on overgrowth of Cowden’s Syndrome, the kind orthodontist made a general statement in the room where Meghan and I were.  He said he was not familiar with Cowden’s, but (thankfully) he believed Meghan to be carefully caring for her teeth.  However, if the overgrowth continued she would need to see an oral surgeon to have her gums cut back.

Yep.  He is a nice man.  But, he obviously doesn’t know my daughter doesn’t miss a beat.  She was all over that comment for weeks on end.  We already had her gums cut once in 2008 for an odd thing that grew over her front tooth.  She may not have a solid memory of the day… but she remembers enough to know she never EVER wants to do that again.

So, what is a Mom to say, at 7:15 AM when the anxiety is impossible to manage?  I need to soothe her AND get her in the car (as the NYC School Bus Strike continues) in the next 15 minutes.

keep swimming

At least she laughed.  It’s nice to have a smart kid.  One who can respect that there just isn’t anything else for me to say.  Some days we have to push on.  Even when we are worried and scared.  Even when we don’t want to.  Even when it’s not fair.

Doesn’t change the fact that she is scared, and I am mad, and the permanence of this whole Cowden’s Syndrome thing really just stinks.

So she got to school and I kissed her and wished her luck on her math test, and she took her aches and pains, and her heavy heart, and her big brave smile, and headed off into school.

They are nice to her there.  Really they are.  But I cried on the way to my school, just a few minutes away.  I am in a rut. I have to get past this anger… for both of our sakes.  But lately I just feel mad.

Of course that’s not who you see when you meet us.  You don’t see worried, and mad.  You see our smiles.  See we get life. Both of us do.  On different levels of course, but we get it.  We know there are so many people who suffer.  We know how blessed we are.  Our prayer list is endless.  But some days we just “keep swimming…” and…(we)

refuse to sink
I got the message at about 12:45.  Meghan’s school nurse had called.  I called her back to hear the familiar voice that I have come to trust tell me that Meghan “didn’t look right.”  She was complaining of lights in her eyes.  She was “off.”  After 5 years in that school, I have received limited phone calls.  When they call – I answer.  So, with permission I headed out early.

I got my girl home.  We sat in the dark room.  I rubbed her eyes.  She had a bit to eat.  Eventually she tarted to perk up…the anxiety had gotten the best of her.  All the makings of a migrane at 9.  DAMN this syndrome.  Leave her ALONE!

And as we wrapped up for the day.  Much calmer than when we had started, there was happy chatter of girl things, and talk of sleep overs and normalcy.  With a kiss and a smile she headed to bed.  God, I love that little girl.

I got in the car to check in on my grandparents.  The phone was off the hook.  This is an ongoing event, and one we share lots of laughs about.  I arrived to find them in their recliners, watching TV.  The phone was in Pop‘s pocket – on.

I asked about their night and Pop told me the story of how he “pulled over a mat and snaked the toilet, a little bit at a time.”

“How old are you?” I asked.

He winked and smiled, and told me he forgot.

I guess it didn’t matter because everything was working just fine.  But some days I feel like I might as well be 93 and he, 39.

As I drove home I thought about genetics, and environment and all those biology classes I hated in high school.  I may not have inherited their PTEN gene, but I grew, and learned, and was taught in their environment.  I grew up in a climate of a “can do” attitude.  We did… because that is what needed to be done.

Still, at 92 and 93 my grandparents do what needs to be done.

I decided while I did not gain all their good genes, I gained their drive and determination.  Their faith,stamina, and hopefully some of their wisdom.

I will get out of this rut.  Cowden’s Syndrome will not own us.  It will not win.  We can do it, and we will.

WE CAN!
WE can.. and we WILL.  SO there! 

I Can’t Fix It

I can’t fix it.

It’s not a scraped knee, or a ripped pair of pants

It’s not as easy as baking a special treat, or giving some extra hugs. 

I can’t fix it.  And it’s going to be here forever.

A little over a year ago we knew nothing of Cowden’s Syndrome.  We knew we had a smart, funny little girl with lots of medical issues.  We knew we were stumping the best of the best doctors.  We knew we were getting by.

And then they figured it out.  And the world started spinning out of control.  Just over a year ago, I got my diagnosis too.

Surgeries, cancer, pain, scans, bloodwork, appointments, bills, headaches, heartaches, illness, missed events, fatigue.

I can’t fix it.

“Love You Forever” is one of my all time favorite stories.

I guess it hit me hardest today.  I never know when reality is going to come at me like a two by four.  But, today it did a number on me.

We went to the orthodontist for her monthly visit.  It has been just over 4 weeks since the braces went on.  She has been a trooper.  Mature as anything.  Careful.  Diligent.  Typical Meghan.  And yet, the gums are starting to overtake the braces.  It’s almost unreal to watch.  We brush – often together.  With an expensive fancy toothbrush.  I help her floss, and still they grow.

We were both a little worried that the orthodontist would yell at her.  Reprimand her for poor hygiene.  But, he was great.  I can’t say he understands “Cowden’s Syndrome” and its overgrowth issues, but he did understand Meghan.   We have been with the office 2 years, and he knows her gums are “extremely reactive.”  So he gave me more tips to help her brush, and suggested another ridiculously expensive air flosser.

But, during the course of the conversation he did say, if they keep growing and overtake the brackets he will have to remove the brackets, have an oral surgeon push back the gums, and then reapply the brackets.

Well, my little 9-year-old who is just about finished with Tolkien‘s “The Lord of the Rings,” had NO problem at all with the context clues on that one.

Several years ago, before we knew it to be a typical “Cowden’s ” growth, Meghan had a large mass removed from the gum over her front tooth.  I will never forget it.  They kept her awake.  Gave her (not nearly enough) Valium, and I had to hold her as they burned it off. 

Apparently I am not the only one who will never forget it.  She was beside herself when we left the office, and remained on edge all night.  She kept reminding me how bad it hurt for one tooth, and how she does NOT want to deal with it for 6.

I can’t say as I blame her, but with little else to say, I simply said,”I’m sorry.”  To which she, in her most grown up voice said, “I know you are, and it’s not your fault.  But you can’t fix it.  You can’t fix me.  No one can.”

At that point trying to reassure her that she wasn’t broken would have been pointless.

I let her go.  She played on her Ipad, finished most of her weekend homework, and watched a movie with Dad.

He shoulders seemed a little heavier.  More of the weight of the world on my baby.  I can’t fix it.  I can’t do anything to stop the firestorm that will come our way in the next decades.  I can only be vigilant.  And hold her hand.  And love her. 

 Oh, how I love her.