Losing the Battle – to Win the War!

 

charliebrown-football

Friday’s thrilling adventure at Borough Hall ended as so many days do.  So excited to tell her story, so amazed by her experience I thought she’d be on the phone all night.

But as we walked up the street to the parking lot she whimpered.  “My knee.  The old pain.  How could it still hurt with the Celebrex?”

Good question, I mused, as I tossed her a cursory answer about the weather, and people’s joint’s aching.

I left out the part about how MOST of those achy people are at LEAST 40 – not 10.  But she knows that already. Can’t put much by her.

never never give up

We headed home, but as things often do here the downward spiral had begun, and it was a quick one.

I soaked her sore knee in an epsom salt bath for some relief, but the migraine that she had been battling all through school was starting to win.

By about 7:20 she told me she was going to bed.  Never a good sign.

No fever.  No signs of “illness,”  but we are frustratingly used to this.  There is nothing tangible that any doctor can seem to figure out as to where all this pain comes from.  Yet it does.  All over.  It’s real.  It’s torturous to watch, and it frustrates the free-spirited agile athlete trapped in this painful body.

She woke around 9:30 this morning.  I was already at the bank.  The text simply said “headache.”  My husband is a man of few words.

When I got home at 11 to take her to her 12:00 appointment she was in a dark bedroom moaning in pain while Felix rubbed her head.

We tried some saline, some food, her morning pills.  No success.  No appointment.

I ran to the party we planned to attend as a family, to wish one of our favorite 5 year-olds a Happy Birthday.

I woke her at 2:30 like she asked.  The CYO meet was at 4.  The highlight of her week.

We tried a warm shower.  More saline.

“I just can’t do it,” she half whispered, half screamed.  “WHAT IS THE MATTER WITH ME?”

My stomach sank.  That was the proof positive that things were not improving.  She looks forward to every one of those meets.

After reassuring her that it’s nothing she’s done, or does… she told me to text her coach and tell him she was really sorry.

And she was.

Another fun event missed.  Another pleasure lost.

overwhelmed 4

 

My 10-year-old amazes, impresses and consoles me, as she says, “Cowden’s may have won the battle today – but it won’t win the war.”

She spent the better part of the day in her bed – willing away the body pain and the headache.

She doesn’t want to feel like this.  And I have to tell you – she handles it pretty damned gracefully.

No one she met yesterday would have believed this was the same kid.  From a full on powerhouse of a conversation with a respected elected official, to barely being able to lift her head.

That’s how we roll here.

That’s where her sense of urgency comes from.  She NEEDS people to know the real deal.  Whether they want to or not.

small battles

It’s 2:30 AM Sunday.  They have been resting for hours.  I had to sort out the banking mess and the subsequent paperwork it generated this week.  I needed a new list.

See my mind is so often preoccupied that I forget… a lot.

Because deep in my nagging Mommy gut, I feel like there is more.  We are missing something.  And I hope its minor.  Or that I am wrong.

No one can explain all this pain.  And lots of people have had the chance to try.

People wonder how I stay so organized, or why.  I think it’s because I spend a lot of time waiting for the other shoe to drop.

I’m over making plans.  I get it.  We can try to commit to things in advance, but our acceptances will always be tentative.  We have to make our decisions in the moment.

The win/loss column waffles sometimes, but we will by the grace of God, the power of prayer, and our love for each other, come out on top.  Failure is not an option.

We are BEATINGCOWDENS.  We will!

winning or losing

“A Friend in Borough Hall”

Meghan received a special invitation a few weeks back.  She kept quiet about it – even though she was bursting at the seems.

On February 27th, as we were preparing for Rare Disease Day, Meghan met and shared her story with Borough President James Oddo.  They hit it off instantly, and spoke like old friends for quite some time before he broke away to introduce the “Readers are Leaders” Campaign to our school.

More about their meeting here:

https://beatingcowdens.com/2014/02/27/rare-disease-day-2014-through-meghans-eyes/

Well after their extended conversation, the Borough President gave Meghan his Email address and reminded her she had a “friend in Borough Hall.”

They exchanged Emails at least once, and Meghan was THRILLED to receive an invitation to sit with the Borough President AT Borough Hall – 4PM, March 28th.

And the make the whole thing even more exciting, her efforts on advocacy and awareness and fundraising earned her the nomination for NY1 “Staten Islander of the Week.” (More on that segment which will air next Friday to follow.)

We arrived early, a rarity for us, but this was a REALLY big deal.  Meghan had carefully selected a few gifts for the Borough President which were tucked in my bag.  She proudly donned her “previvor” tee, and we sat anxiously in the comfortable waiting room.

This kid is clearly a "FORCE" to be reckoned with!
This kid is clearly a “FORCE” to be reckoned with!

We were given a tour of the basement and first floors, and showered with some gifts by “AJ.”  A giant help, and a generally nice guy.

Borough hall7

 

Meghan and "AJ" our helpful tour guide!
Meghan and “AJ” our helpful tour guide!

 

 

 

Then, it was time.

Meghan and I were  greeted with hugs by our warm and extremely genuine Borough President.  He repeatedly introduced Meghan as his friend.  He told stories of how she inspires him.  His staff and constituents walked in and out, joined the conversation, and came and went, as if a 10 year old in the office was a normal occurrence.  They talked about health and advocacy, about her denim ribbon necklace, and her Cowden’s Syndrome Awareness card. They talked about her surgeries and her medical struggles, but also about reading, and literature, and the healing power of dogs.  They have quite a lot in common and my heart sang to watch my 10 year old in the arm chair hold her own with a well-respected politician as if they had been friends for years.

borough hall2

 

Borough hall4

The NY1 interview was comfortable.  She speaks clearly, and flashes an award winning smile.

Borough hall3

Meghan gave Borough President a rock with the word “courage” in it, after he shared a touching story with her.

courage stone

He reminded her if she needs anything, she is to contact him directly.  And as the year goes on as she thinks of new ways to spread the word about Rare Diseases, he will help in any way he can.

Her eyes brightened.  Her goals got larger.

“You can be angry, or you can DO something,  So I decided to DO something,” she told the reporter.

And she did.

And she will.

Watch out world.

Borough hall5

 

Thank you Borough President Oddo.  Staten Island is in good hands.  You are one of the good guys.

Sometimes I forget

Sometimes-I-Forget

Sometimes I forget that Cowden’s Syndrome is not just Meghan’s – it’s mine. If I am to be precise, it is Meghan’s BECAUSE of me.  And I say that not out of guilt, but more as a point of fact. And I had plenty of time to think about THAT – and the rest of the week – in the MRI this morning. mri_machine Last summer when I saw the oncologist, and the surgeon about the 4 sizable vascular tumors on my spleen, they were unsettled.  I fought hard for my spleen.  I felt I owed in to my emptying insides, currently missing my uterus and ovaries.  I “won” a 9 month reprieve.  And not the sentence is up for review.

So as I arrived at the facility at 9AM, and by the stroke of those angels, found on street parking in NYC, I dutifully filled out the intake papers.  Papers that, well between Meghan I, I have lost count of the number of times I have completed.

Any chance you might be pregnant? Asks the male technician who brought me back.  Even though I had written the date of my hysterectomy on the intake papers, I dutifully replied, No.  Not that I ever WANTED to be pregnant again, but you know sometimes they could read…

Any implants in your body?  Metal, I asked?  No, ANY as he clutches the paper I spent 15 minutes completing – unread.  Yes, I have breast implants – a double mastectomy 2 years ago.  I gestured toward my purposely selected “NO, They’re not real – the real ones tried to kill me” shirt.  Not even a smile. no they aren't real Why are you having this exam?   By now I am ready to scream JUST READ!  But I know better.  I have played the game too often, and the man you yell at now could be the one inserting your IV in 10 minutes. Because there are 4 tumors on my spleen that are being monitored.

HOW DID YOU FIND THOSE?  asked the non- reader. Well, I have Cowden’s Syndrome – and we tend to grow tumors.  So they were found accidentally during another scan.

Oh.

That was the end of the medical talk.  Maybe the words “Cowden’s Syndrome” stumped him.  Just as well.  Directions on what to take off and what to leave on.  Locker key in hand, I was led up the stairs by the non-reader to the tiniest MRI machine I have ever seen.  (and I have seen quite a few.)  Meghan did some time in this machine during the 3 hour MRI debacle of her hand last summer.  I felt a wave of nausea and I am not typically too freaked by these.

“How did I end up in the tiny magnet?” The non-reader, still with me, grunted that I was the thinnest one in the waiting room.

 Not sure if that was a backwards compliment.  Thank you ISAGENIX – I think. isalean-bar-chocolate Grateful I had held my tongue it became apparent that the non-reader and I were in this together.  As he told me to lay down so he could start my IV.  I sat straight up.  My daughter gets a few things from me.  I sat up and had the IV placed so the toxic gadolinium could drip slowly though my body.  I laid down, closed my eyes and kept them closed the whole time.  I am pretty sure my nose would’ve been almost at the top.

And as I spent 30 minutes amid the noise and banging… “Breathe in… breathe out… stop breathing.  Breathe normal.” breathe stone My mind wandered.  I hadn’t given much thought to the MRI, or the reality that it COULD indicate growing tumors, and another surgery.  For so many reasons I have blocked the thought.  But, now its too late.  It’s like telling a secret.  The images have been shot.  The report will be read next week.  The reality that already is has been exposed, and I just get to wait and see.  Cowden’s Syndrome.  We grow things.  It’s what we do.

I am grateful maybe, for the insane pace of life.  For the full time job.  For the daughter who swims, and has PT and doctors galore.  For the car that won’t go into gear – the 1996 that has likely seen its last trip – but can’t be replaced right now.  For the paperwork that keeps me on my toes, and sometimes drowning a bit.  For the letters that need writing, and the never ending list of phone calls that need to be made. time struggle I am grateful even for the “calm” day, when we didn’t have much to do – until I noticed a bulge in the sidewall of the tire Thursday.  So I grumbled a bit, then thanked my angels and headed off to Costco, where they put on the donut and told me to come back Friday. I did, and the tire is new.  The car is safe.

So I logged onto my online bill pay to see what had cleared and got the shock of my life as the zero balance hopped off the page.  Phone in hand immediately calling my bank.  Apparently it only took someone a day to extract $2000 from my life, and start a cycle of more unending paperwork.

Two hours at the bank yesterday, an hour at the Police Station. My only wish for the dimwit who decided to pay his credit card bills with my money is that if he REALLY wants to be me – he takes the whole deal. The doctors, the tests, the tumors, the bills, the anxiety, the WHOLE thing. wind After all, its’s only fair… if you want to take someone’s identity – you should knwo what you are getting into. Sometimes I forget I have Cowden’s Syndrome.  I am always sure Cowden’s Syndrome doesn’t have me.  There are too many other things vying for my attention. breathe As the non-reader said, “Breathe in… Breathe out…. Stop Breathing.  Breathe Normal.  OK your test is finished.” HA!  If only he knew…

Keep Swimming… Just Keep Swimming

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂

This image has been on my mind all week.  Truth be told there is an awful lot on my mind,  and I apologize that most of it is likely to come out jumbled.  When I don’t get to the computer regularly there is all this stream of consciousness stuff…

invisible illness 4 dumptruck

My girl feels cruddy.  And I know, “its a big surgery,” and “it takes time to even things out.”  But it really stinks.  Her thyroid numbers are way out of whack.  The endocrinologist is absent… most of the time, and even if he couldn’t answer my questions, I’d like to be able to ask them.  If my thyroid numbers were as wacky as hers you’d be scraping me off the floor.  Here comes the crazy mom – trying to restrain myself for one more blood work cycle before I fire him too.  Good thing I live in a big city.  I might well run out of doctors otherwise.

It is so hard to watch her  – feeling betrayed by her own body.

She is bright.  And kind.  And super rational.  She gets the whole idea that people have it worse.  She is grounded.

But sometimes she is 10.  And she doesn’t understand why she can’t keep up.  Cognitively she can dance.  But physically…

She has to decide on a Friday if we are busy on Saturday morning.  This way she knows if she can play gym.  She gets through the gym period, and often has the time of her life… but we have to block out hours on Saturday to recover.  She played last week.  She had the time of her life.  Good thing the school staff doesn’t have to watch her get out of bed on Saturday.

And running.  How she LOVES to run.  And she’s fast.  But she can’t.  Not for long anyway.  Tendonitis, inflammation.  And forget it this week as we TRIED to lower the Celebrex.

Never mind the swimming.  She belongs to a team that practices 4 times a week.  On a good week we get there twice.  Not for lack of trying, but exhaustion gets in the way.  It is CYO season now, so she is with a more recreational team too.  Some fun times.  But she wants to be faster.  And she could be.  But her body betrays her.  And it makes her angry.

And now the headache.  The migraine  returned 2 days ago despite the recent medication increase.  She is just so very tired.  The neurologist called me tonight.  Increase the Celebrex.  See if that helps.  So much for less medicine.  Let’s pray for relief.

Hope-can-grow-from-the-soil-of-illness

I think alot about the others.  I think about the other’s with RARE Diseases.  I think about the ones less fortunate than us.

I also think about the other’s with Cowden’s Syndrome.  I have never met them – any of them except my own girl.  But, we “know” quite a few.  There are some I keep in touch with on an individual basis, a few Meghan corresponds with, and the bulk of them come from a Facebook group for Cowden’s sufferers.  We share experiences and ideas, and successes and disappointments.  We toss things out to each other before the rest of the world.  We speak safely to people who “get it.”  And although even among us our symptoms vary widely, and I believe a lack of research keeps us from being sure what is Cowden’s related, they are my best support.

I often go to bed and wake worried about these people I’ve never met.  I think about their physical struggles, and their family struggles.  I pray for them when they have tests, and surgeries, and they do the same for us.  People could argue they aren’t “real” friends.  I would have to disagree.  They give me hope.

I

power-of-persistence

Then there are days like yesterday, when you arrive at home after 14 hours at work to find a package on the counter.  And inside the package are jeans for Meghan and I.  Carefully sewn on each rear pocket is the denim ribbon symbol.  Also in the package was a bag “Hope, It’s in our Genes.”  Yep.  It sure is.  A friend of my sister’s.  Inspired my some crazy words she’s read here.  Go figure.  Grateful.

Make-The-Best-Of-Everything

And there are the events coming up.  The fifth grade events.  The ones where she will try her best to fit in.  The ones where her PTA has carefully worked behind the scenes to help her feel “normal” as they serve her dinner at the Father Daughter Dance, and the Fifth Grade Dance.  The trip that someone will have to come to – because there won’t be any safe food there, and the growing realization that so much socialization in life revolves around food.  Just another way to feel different.  But she plugs along.  Keeps that smile.  stays focused on the good as best she can.  Because she is acutely aware that there is a lot of good.  And painfully aware that things are fleeting.

running away

We miss my father.  It’s only been a few months, but every day seems to contain a bill, or a banking issue, or a quest to sort through the photos left behind so I can copy them for my siblings and get about the business of sharing them with the world.  There is a glitch in each direction.  No major problems.  Always just a series of minor ones.  He may not have been always around, but the time he was was powerful.  Maybe I keep myself too busy. Maybe I worry about tasks insignificant to others.  But I do, we do what we can to keep his memory alive.  We talk about reality, and we keep our most special missions close to our hearts.

Life's not fair

There should be sunshine and roses.  But there isn’t.  Well maybe there is… if we look hard enough.  All I seem to hear are stories of tragedy, heartache and pain.  In my own family, and in general conversation there are serious illnesses, untimely death, suffering, pain, and sadness.  I don’t profess to know the grand plan.  Not for a moment.  And I am sure its better that way.    I have only learned to find the blessings I can in whatever I can, as frequently as I can.  That is what keeps me sane.

I am far from perfect at this.  FAR from perfect.  But I – like all of us, am a work in progress.  So as the days sometimes seem insurmountable…  I remind myself, and my girl – that we have to follow Dory’s advice…

just_keep_swimming__3-334182

Recovery – phase 3 = HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

At the end of the day… quite literally if you go by our arrival time last night… I guess all that really matters is that your little girl went through the surgery successfully and you get to arrive home, as a family to sleep in your own bed.

That’s why I refrained from saying too much in the midst of my Mamma Bear Rage last night.

mama bear

Because sometimes you need to sleep, and think carefully before you type.

The surgery went smoothly.  The surgeon did a fine job, and so did his team.  It was not their fault we were delayed by hours.  Someone else’s baby needed their attention.  And I can respect that.  He followed up personally, listened to Meghan, was cautious but not paranoid.  His attention is to the surgical incision. The follow up care needs to be guided by endocrinology.

Meghan’s largest discomfort, aside from the sliced neck muscles, appears to come from the “durabond” glue used to hold the incision together.  Things on her skin – even band-aids annoy her.  This is making it feel extra tight (doing its job,) and is making breathing and eating uncomfortable.

But we traveled to the hospital with our gluten, dairy, soy free cooler, and she was progressing on pretzels and our ginger ale, mixed in with a little “Ever Roast Chicken Breast.”  By the early afternoon she looked better.  The surgeon said to watch her till 5.  A fair number considering she didn’t hit recovery until 7 PM the night before.  If she was still good at 5 PM he would clear her to go.

And then there was endocrinology.  Perhaps spearheaded by the fact that Meghan’s endocrinologist is on vacation for all of January and February, or maybe just a poor information sharing structure, things fell apart at endocrinology.

When the thyroid comes out there is always the risk of surgical damage to the 4 small parathyroid glands that help regulate thyroid function.  That being said, even when they aren’t damaged, they are often traumatized for a bit.  Low blood calcium is OK for a few hours, but not a few days.  Like everything else, the body needs all things working together for smooth operation.  Originally it was explained to us, that it was not uncommon for the calcium to dip after surgery then recover.  They had to just see if it tanked out.  The decisions for her post op supplementation would be made based on these blood results.

So, she had blood drawn at midnight after surgery.  Then there was the draw at 1 AM for blood sugar.  Then there was a draw at noon.  Later in the afternoon one of the doctors/residents spoke as if Meghan had received a dose of calcium (2 pills and a liquid) prior to the blood draw.  I insisted that was not the case.  Then we were told the blood had to be redrawn at 6 PM and would be read at 7PM so discharge orders could be accurate.

Well, at 6:45 when I hunted someone down for the blood draw, again I thought it odd that the  calcium – that was supposed to be there before the noon draw, showed up 30 minutes AFTER the 6:45 draw.  I waited until 8PM and started hunting down results.  I was told that the ionized calcium had dropped from 4.8 to 4.3.  I picked up my copy to show them the midnight draw was at 4.8 and the noon draw was at 4.3,  Apparently the 6PM draw held at 4.3  There were two other tests, and I wanted the numbers.

Run around.  Run around.  Run around.  Finally after much work and some heated conversations we got the numbers from the other 6:45 tests.  The calcium held their own, indicating a drop off to be unlikely.

Originally we were told she had to stay overnight for a 1 AM and 7 AM blood draw.  Then we were told that since the labs were drawn with NO supplementation. ( I brought THAT to their attention) and she still did OK, that NO blood draws were ordered for one week.  NOTHING overnight.

Now it was after 10.

The day nurse, who was grossly overworked, and contrite and apologetic had missed the order for the calcium.  At least I was able to respect that she apologized right to  my daughter for muddying up the entire process and raising her anxiety.

The resident – 1st year who left because I was asking too many questions, and declared himself “off duty,” is the miniature version of why our medical system fails us.

The passing of the buck that took place around the endocrinology department – disgusting.

And this is the clean version.

Facilities.  Doctors.  People.  Can rest on reputations previously earned.  And then one feeds into another and that reputation carries them – sometimes too far.

We have been there, and done that.  And we are far from done.  So loyalty lies in individual treatment and care by individual doctors and nurses.  There is no one perfect facility.  There is no one perfect place.  Not even in Manhattan.

We gathered our things quickly.

We were in the car at 10:45PM.

My wise daughter asked what the lesson learned.

I said,”Trust your Mom.”

My husband said, “Educate yourself.  Advocate for yourself.”

I guess we are both right.

The ride home was tough.  Painful.  You use your neck for an awful lot of things.

But we got home in time to give her a well deserved Valentine’s Day Gift

Alex and ANI hero front

Alex and ANI hero back

She certainly is our Hero.  And as we travel down the road to recovery again – a road she is exceptionally good at – I hope she remembers both lessons from the car ride last night.  Especially the one to “Trust your Mother.”  For now I can be the advocate.  She has to find some time to be the kid.

Valentine's Day 2004 - our first hospital stay.
Valentine’s Day 2004 – our first hospital stay.
Valentine's Day 10 years later...
Valentine’s Day 10 years later…

Recovery – the real deal (Phase 2)

It was almost 11 last night when we were cleared to leave recovery, and taken to a bed on the Peds floor.  Dad had to leave to head back home before the next round of snow began.   After all, he needed to have a car ready for our (hopeful) Valentine’s Day discharge.

So we settled into a tiny, awkwardly laid out room. trying not to disturb a roomate who likely would have preferred not to be awoken at 11 to share a room with someone she didn’t know.

By that point I might have been a little difficult.  (I know that is SHOCKING!)

Mama and baby bear

mama bear

But as we settled into the room it became apparent that there was no place to walk safely.  Some rearrangements were made, and the reality that she couldn’t possibly see the TV was softened by Amazon Prime (on demand) on the laptop.

She was hungry.  At this point she was close to 24 hours with no food.  I try not to let her go four hours.  Her stomach needs constant gentle reminders it hasn’t been forgotten to keep it from getting angry.  They said soft and clear.  We tried apple juice.  Then they offered an italian ice with soy protein.  Not so much.  Another juice I was told.  And I should have trusted myself.

Soon after came the familiar green face from the child with a body full of toxic anesthesia crap, AND apple juice – which just isn’t on her list of beverages.

She is always my angel girl.  Even post op – she got herself to the pail before her body forcefully removed its toxic contents.

I took the opportunity to change the gown and bed sheets, because – why not?  And by midnight she was on my laptop watching “The Hunger Games.”

They said clear liquid.  I said ginger ale and gluten free pretzels.  I win because I don’t ask.  And she started to perk up.

Pain medicine in place,  she enjoyed the movie.  Except the blood draw.  Which fortunately was through the IV.  Then again an hour later. (Good thing she wasn’t asleep) only to find out her blood sugar was crazy out of whack.  The finger stick brought it into a much more normal range.  Thank goodness!

By 2:30 there were actually 5 uninterrupted hours of sleep for my exhausted girl.

She awoke at 7:30 immediately remembering the pain of having your throat slit open, and a small lumpy organ removed.  Today things were more stiff.  All the local anesthesia gone.  She was hurting.  And its a hurt I remember.  So it broke my heart worse.  You never realize how many things you use your neck for, until…

Brave girl.  Held it together.  Had some more of her pretzels and ginger ale, and even some of her chicken breast I brought.

We wheeled and dealed and got her to agree to a nap after her second movie.  And so she rests now.

Calcium levels keep us here.  Wondering and working to determine parathyroid damage.  The synthroid has begun.

The doctor will set us up with restrictions, rules, and orders.  When he’s able.

For now our chart reads “Pending Discharge.”

We are ready, and I am behaving…. I promise.

Ten years ago we spent Valentine’s Day in the hospital.  And here we are again.  What a decade.  It’s not glamorous by any means – but I am still with the loves of my life, and that makes me a lucky gal.

Trying to distract the pain away.
Trying to distract the pain away.
Me and one of my Valentines!
Me and one of my Valentines!

Recovery – the real deal (Phase 1)

So a huge part of writing this blog is about raising awareness of Cowden’s syndrome, and its realities.  Some of the realities are really not so nice.

Cowden’s Syndrome involves surgery.  Lots of it.  Surgery really sucks.  Sorry, but it does.

General anesthesia is awful.  Toxic crap.  Especially awful in a body that isn’t fond of toxic crap.  Top that off with a breathing tube when your throat is being cut, and its definitely an uncomfortable wake up.

The surgeon said she did well.  He said he got the whole thyroid and the vocal nerves are intact.  He said she had many nodules.  Numbers in the teens.  A bunch were small.  A bunch were not.  He said there was lots of scar tissue from her three previous biopsies.  Only three FNA – tiny microscopic needles, caused significant scar tissue.

Cowden’s Syndrome – “HYPERHEALING is our Superpower”  What’s yours?

Surgery number 11 – done.  Procedures…. I’ve lost count.

Pathology 5 to 7 days.

She is sitting up, looking at her ipad.  A professional.  A tough girl.

Her Daddy is on his way home.  Home to get the car.  Hoping.  Praying that the calcium levels are good, and the thyroid levels are good, and tomorrow we can go home.

That brave face hides this...
That brave face hides this…
And sometimes needs this...
And sometimes needs this…

Two of my girl’s favorites…. “Let it Go….”

The snow glows white on the mountain tonight,
not a footprint to be seen.
A kingdom of isolation and it looks like I’m the queen.
The wind is howling like this swirling storm inside.
Couldn’t keep it in, Heaven knows I tried.
Don’t let them in, don’t let them see.
Be the good girl you always have to be.
Conceal, don’t feel, don’t let them know.
Well, now they know!

Let it go, let it go!
Can’t hold it back any more.
Let it go, let it go!
Turn away and slam the door.
I don’t care what they’re going to say.
Let the storm rage on.
The cold never bothered me anyway.

It’s funny how some distance,
makes everything seem small.
And the fears that once controlled me, can’t get to me at all
It’s time to see what I can do,
to test the limits and break through.
No right, no wrong, no rules for me.
I’m free!

Let it go, let it go.
I am one with the wind and sky.
Let it go, let it go.
You’ll never see me cry.
Here I’ll stand, and here I’ll stay.
Let the storm rage on.

My power flurries through the air into the ground.
My soul is spiraling in frozen fractals all around
And one thought crystallizes like an icy blast
I’m never going back; the past is in the past!

Let it go, let it go.
And I’ll rise like the break of dawn.
Let it go, let it go
That perfect girl is gone
Here I stand, in the light of day.

Let the storm rage on!
The cold never bothered me anyway…
And ROAR…

“Roar”

I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everythingYou held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now

[Chorus]
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar

Now I’m floating like a butterfly
Stinging like a bee I earned my stripes
I went from zero, to my own hero

You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now

[Chorus]
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’ll hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar…

Ro-oar, ro-oar, ro-oar, ro-oar, ro-oar

I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’ll hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar…

These three remain….

these three remain

She walked away today.  She broke the rules.  She updated the plan.  On surgery number 11 she hugged us goodbye, and dry eyed walked through the secure area with two young nurses.  The doors barely closed before I dissolved, an exhausted puddle, into my husband’s arms.

That didn’t last long… You only get a moment or two to pull it together.  Then there was some really rotten cafeteria food, and WAITING.

They took her in at 3.  Three and a half hours after she was scheduled.  She was tired, and hungry.  And more grown up than I am at 3 PM when I haven’t eaten.

What a whirlwind!  Last Wednesday when we met the surgeon I was stunned by how quickly he wanted the entire thyroid removed.  Stupid Cowden’s Syndrome.  Makes people quick to pull out whatever seems to be misbehaving.  And (SIGH) they are usually right.

So as the week built, and the media started predicting the newest storm coming…. I brushed it away for a while.  I thought there was no way it could stand in the way.  The surgery was scheduled.  She was ready.  The throat clearing has reached epic levels.

Faith.

faith

Faith that it was going to be fine.  Initially faith that the storm would pass.  Faith that we would arrive on time to an early surgery Thursday morning.

Then, as happens so often I was reminded that FAITH, is not about me.  It’s not about my terms, or my time, or my way.  FAITH is knowing, trusting, believing. that God will provide what we need.  Whether it fits my plan or not.

So, as it became evident that there would be no safe way to travel Thursday morning, the phone calls began.

HOPE

Rare_Disease_Day_Logo_Hope_

So much talk about HOPE this month.  Rare Disease Day, and “HOPE – It’s in our genes.”  Hope became necessary.  The faith and hope working hand in hand, with a few mini meltdowns of worry mixed in.  (HEY, I never claimed to be perfect!)

Back and forth to the surgical team, to the social worker, the secretaries.  Pleading.  Help us.  Hotel rooms that were available running several hundred dollars.  Offers from loving people to pay the bill.  But in the end money wouldn’t have stopped us.  We would have paid whatever we needed.  Because we had to be here.  Right here.  Right now.

So finally around 2 O’Clock on Weds. the call came.  “We can put you up at the Ronald McDonald House for the night.”  The fee – incredibly reasonable.  The location- perfect.  The reality – it was time to pack us up and be out of the house by 8.

Packing to take Meghan away is an adventure.  It’s not the electronics, or the “stuff” but rather the food.  Not even a major hospital can safely prepare Gluten, Dairy, Soy free food.  So there has to be a cooler.  Dad made fried chicken and plantains.  I picked up a pound of a Boar’s Head staple.  Cookies, granola, ginger ale, and other necessities.  Showers for all.  And Grandpa picked us up at 8.

We brought our own sheets – because you need to wash theirs before you go, and I doubted we’d have time.  I have to admit I was worried.  Really worried about what I would find through the doors.  But what I found was… love.

s

love-inspirational-daily

I had heard of “The Ronald McDonald House- The house that love built.”  But I never gave it any thought.

Ronald McDonald House

I have a new charity on my favorite list.

We were welcomed – almost embraced by love and kindness.  There was a nonjudgmental compassion the radiated out of every staff member.  We were given keys to our rooms, and a tour with the rules of the “house.”  We were shown to our room only after Meghan was allowed to choose a few games to play – and keep – from their back room.  And, after she was given a backpack – with a special monkey, and a monkey blanket.

And on the return trip after the tour, before we saw our room – she was handed a warm, beautiful, blue and green blanket.  Her grateful smile. My heart – full of love in this house.

Our room was on the 11th floor.  Immediately I was at ease with the wood floors, foam mattresses, and EVERYTHING wrapped in plastic.  And there was the most beautiful view.

Lobby
Lobby
Lobby
Lobby
Our Room
Our Room
View out the window
View out the window

And as we each found our way last night into our own level of sleep, there was LOVE.  Everywhere in the room.

We checked out gratefully this morning, due to arrive at the hospital for an 11:30 surgery.

View out the window on this "Beautiful Day"
View out the window on this “Beautiful Day”
Waiting for surgery with the new monkey from the bag last night!
Waiting for surgery with the new monkey from the bag last night!

By 3:00 when she finally walked through the doors we had had to spend some time reminding ourselves that we were blessed.

A beautiful chaplain met us this morning, and clearly spoke Meghan’s language.  She compared God to a loyal dog… always there – forever understanding of our needs.

The doctors took extra time with someone else’s baby this morning.  I am glad they have that level of compassion.  I am glad they take their time.

Now they need to take their time with mine.

The last status update came 15 minutes ago.  They only began around 3:40.  Prep took a while.  She is stable, but its slow going.  What to expect from a Cowden’s Syndrome thyroid filled with 16 or more nodules?  Why make it easy.

Thankfully – she has some very special guardian angels on the case today.  And the prayers of countless others.

In our family of three its appropriate to remember “These three remain; faith, hope, and love – and the greatest of these is LOVE!”

More to follow as soon as I can…