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!

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Normal?

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Really?

Normal.

That’s it?

Normal MRI.

Three hours, two different magnets, three doses of contrast dye.

Six days of agonizing waiting.

The vascular surgeon called this morning.

questions

I want to be happy.

I want to be relived.

I want to be sure I believe he pored over the images on the disk and didn’t just read the report.

Unfortunately I can not be happy, or relieved, because there is pain.  Lots of pain.

When I told Meghan about the conversation she got angry.

I cried.

I don’t know how to help  her except to keep pressing and pressing for answers.

At least she knows I believe her.  I suppose that’s more than some kids in her boat have.

But still its hard.

There is no diagnosis.

There is pain.

She has work to do.

Writing is agonizing.

Swim practice certainly doesn’t help.

What do you do?

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I can’t take away everything she loves.

I can’t absolve her of responsibilities – even when I know they cause pain.

I called the rheumatologist.  For a small fee I sent her the CD too.  It’s only money.

Maybe she will look harder.

I feel like I have been beaten up.

I spent the afternoon writing a letter to the corporate office about chronic inconvenient car problems.

Really I am tired of all this fighting.

Can’t we all just get along and do the right thing?

No words of wisdom today.  Today we do it Dory’s way…

keep swimming

JUNE!

It’s June.  It doesn’t feel like it.  At least the weather doesn’t.  It’s cool and rainy.  I guess that’s OK for now – while we are still wrapping up school.

It has been a long week.

I don’t usually leave my blog unattended for so long.  I am behind at writing.  I am behind even further at my reading.  It seems the days just blend together lately.

It is June, and when you are a school teacher, this is a month of eager anticipation, and volumes of paperwork to be settled. There are boxes to back and things to carefully put away in preparation for the fall.  There isn’t much time to be still.

schools out

Well – in another 2 weeks it is!

It’s June, and when you are an advocate – you do take a few minutes to celebrate the victory that put speed bumps on the street where you had the accident that damaged your back forever and ever.  You are grateful for the citizens, and politicians alike that fought relentlessly.  You are thrilled by speed bumps, but you still want that stop sign.  You celebrate with a glass of wine – or two.

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It’s June though, which means that damaged back has to ache longer in between trips to the chiropractor, and the PT you promised yourself seems like it may never happen.   You are the mother.  You will get by.

It’s June and when you are a Mom of a kid with Cowden’s Syndrome you spend 2 or three afternoons a week at physical therapy to make her chronic pain bearable.  Not totally sure the pain is related to the Cowden’s, but sure it’s related to SOMETHING, you scoff at the denial for school based PT and wonder what they would say if one of them could spend a morning in your house watching your 9 year old walk like she’s 90.  You balance those PT appointments with swimming lessons, all in preparation for the team she will join.  The team she is desperate to swim on successfully, and God willing – pain free.

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It’s June, so you balance the breakthrough of the virus on that adorable immune compromised 9 year old’s face with increased doses of the antiviral medicine and extra trips to the pediatrician.  It’s June so when it’s not pouring – you make sure she has a hat to keep the sun off her face.  And when you look at the dose of antiviral medicine you start to feel a bit guilty, nervous maybe, about her liver – and all the prescription medicine.  So, you take a chance and toss the Celebrex to the side.  Hoping maybe, just maybe she can get by without it.

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It’s June and its raining.  You feel a little guilty about “forgetting” to tell her you stopped the Celebrex, but each day you hear the complaint of another joint, another ache, another pain.  Ten days later you abandon your hopes of relieving the stress on that young liver, and you relent. Too many Tylenol – not cutting it.   Celebrex it is.

The war rages – all the months.  The battles are won and lost on a regular basis – but the war looms large.  I don my armor – a large binder of medical facts, bloodwork, and reports.  I gather my inner strength.

It’s June.  Summer vacation is coming, but there will be no camp in our house.  It doesn’t fit in with the schedule.

calendar

Every six months.  Every doctor.  Forever.  Mine, and hers.  Different doctors.  Different times.  Different facilities.

I am getting better at the scheduling.  I have learned to bunch them together.  So, we go in February and again in July.

For Meghan it’s the thyroid first.  That foreboding nemesis.  Ultrasound, appointment… and we will see what comes next. Then its the AVM follow up, and the genetecist.  That’s just the last week in June.

Mom has an MRI to schedule to look at that spleen, some more surgical follow ups…

There will be 15 appointments before the 2nd week in July.  That’s if every one goes well.

This is how it has to be.  We have to work, she has school.  We can’t have the appointments all throughout the year, so we must endure them all at once.

It’s June.  I am already tired.  Wrapping up one full time job to focus on another. I feel my anxiety rising.

Getting all my rest.  Gathering my inner strength.  Armed and ready.  Kicking Cowden’s to the curb…

We can… WE WILL!

keep swimming

Changes – big small, and in between

All sorts of changes… and today on Easter, one of the most significant.

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My Mom said to me many times when I was a teen, that I would do more changing in my 20s than I ever would in my teens. She was absolutely right.

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I guess she didn’t want to overwhelm me, because she never mentioned the volume of changes to take place in your 30s.

You grow up sure.  You have strong opinions.  And slowly… they evolve.

I’d like to say the values I was taught as a youth are still at my core, but my expression of those values has changed over time.

And, while all that was taking place – I managed to meet the love of my life.

Sometime after we married we purchased a true “handyman special,” which we are still polishing up 13 years later.

Then there was this beautiful little girl – rocking our worlds from the very beginning.  NICU, colic unceasing, OT,PT, Speech, hospitalizations, chronic viruses, tests, doctors, surgeries – and eventually Cowden’s Syndrome.

She grew into a beautiful young lady – despite the odds stacked against her.  Her very existence changed my long standing beliefs on modern medicine, and strengthened my faith in God every step of the way.

My family unit is so strong.  We are incredibly blessed to hold each other’s hands through the twists and turns and changes life has in store.

Today was a big one.

On this, Easter Sunday, the Celebration of the Resurrection of our Lord, my family stood in front of the Moravian church and professed our intention to become members of their community.

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My history, my heritage, my core, was developed as a Lutheran.  My heart is now Moravian.

easter family

And their motto, “In essentials unity, In non-essentials liberty, In all things LOVE,” speaks to my soul.

We make decisions every day – guided by the power of the Holy Spirit, with faith that we are moving in the direction intended for us.

The fact we now attend worship as a family of THREE, leads me to be sure we are on the right path.

my prayers

My 30s have sure been a trip.  I have only a few more months left and I wonder what else is in store.  But heck, then there are the 40s to look forward to.  One day my mom will get a few minutes to sit still, and I’ll  grab a bottle of wine and ask her all about them.