Behind the Scenes…

We don’t post the awful pictures.  We leave out the ones where we look less than our best.  Social media allows us to live in the delusion that everyone’s life is “perfect.”

I’ll be the first to admit the ugly truth.  It’s far from perfect.  It’s not neat or clean.  There is no bow.  And yes, most of the time I do delete the awful ones.  Those images and experiences are seared into my soul.

I prefer to go with the theory that the body forgets pain…  At least your own.  It’s how we survive.  But, if you live watching a loved one in pain – you know the memory will not slip even a tiny bit.  If you hold your child as they cry out in pure agony, or when they are weak from fever, you can remember where you were each time.  If you watch your teen wince simply through a series of steps, or check to make sure they are breathing as they sleep the better part of two or three days at a clip – you don’t forget.

Recently, Meghan was in a production of “Beauty and the Beast Jr.” with the Staten Island Children’s Theater Association, Inc.  She loves the experience of working with a theater group and has been with this one a few years now.  It is such an enjoyable time in her life.  She spends months of Saturdays with genuine quality people preparing for the show.

Meghan as “Madame de la Grande Bouche”

And during those same months she is thriving academically.

And training for swimming.

And making regular appointments, routine, follow-up, and therapy.

And contending with seasonal allergies that are nothing less than relentless.

And, she is, every single day a person living with Cowden’s Syndrome and the effects it has on her, both physically and emotionally.

The show was almost 2 weeks ago.  It took me a little bit to get my thoughts together.

I think I have it now.

Living with chronic illness, chronic pain, chronic life altering physical ailments, is in some ways similar to putting on a production.

You set your sights on what you want to accomplish – large or small.  In some cases it’s going to a party, and in other’s it’s going to the backyard.  But, you plan for it.  You practice it.  You consider every detail.  You may have to select the right costume and even stage it so you don’t sit or stand for too long.  You know just what your body can do and there is a short window where you have to make it all work.

The rest of the time you are backstage.

You are in pin curls and shorts with a tank top.

You are rubbing your feet.  You don’t have make-up.  Backstage and rehearsals, these are what life is made of.  But, we don’t take the camera out while we are there.

Everyone’s preparation is different.  I can only write about ours and confidently say everyone has some level of preparation before the “show”.  Some people make it onto the stage more often than others.  Some people have fewer performances, but make them count as much as they can.  Those people take nothing for granted because they have no idea when they will step out into the “stage” again.

That’s what social media looks like to me, anyway.  Every picture is on the stage.  Some have more than others.  But, because of the world we live in it is easy to judge based on what we see without considering what we DON’T see.

The night of the show Meghan went to the diner with her friends.  She got home close to midnight.  It was Sunday, and a school night, and I had already decided she’d stay home the next day.  It wasn’t a reward.  It was a necessity.  The amount of energy her body had expended could not be recovered quickly.  She slept until 2pm the next day, and was asleep again by 9.

I sent her to school that Tuesday – ready to roll.  She swam at 5am, did a full day of school, an hour of physical therapy and another 2.5 hours of swim practice.

Probably not the best plan.

The physical therapy is in place to try to strengthen her overall.  Joint laxity, ligaments subluxing… all sorts of cracking, popping and shifting.  The search for answers is on, but in the mean time we do PT…

By Wednesday she couldn’t move.  She made it to school – barely.

Her IEP meeting was that afternoon, and we had lengthy conversations about all sorts of physical and emotional needs relating to school.  We also spoke at length about the service dog we are in a holding pattern waiting for, and how he will fit in to the big picture.  So many questions…

Thursday we got in the car to go to school.  By 7:30 I had her back in her bed.  She just could not.  She slept until early afternoon Thursday, followed it with and early bedtime and slept again until early afternoon Friday.  There was a little less sleep as the days went on but it was a slow process.

The show that was so incredibly worth it in every way – cost her a full week in recovery time.  Her body hurt so deeply.  This is not an out of shape child.  This is a person living with a chronic pain and illness that is affecting her body in ways not even the doctors fully comprehend yet.

But I didn’t post pictures of her wincing in agony, or sleeping for days.

To the outside world she doesn’t look sick.  She’s 5 foot 8, full of muscle and extremely well-rounded.

She works hard at it.

Some days are easier than others.  But every day she works.  She is fierce and relentless and she does not quit.

Next time you catch a photo of her smiling or singing in a pretty dress know that it took a lot of staging to pull that off, and there will likely be a lot of recovery on the back end.

But, she wouldn’t have it any other way.  Not for a moment.  She is my inspiration to remain…

#beatingcowdens

 

In a Dark Room…

daughter

I’m thankful that some nights she still invites me to chat with her in her dark room

Late

After she should be asleep

I’m thankful that we can relate to each other

Different – incredibly different

Yet so much the same

Yesterday I hurt a lot

An unusually extra tough day for me

But I looked at her and I kept on plugging

She knows no other way and leaves no other option

I hate that she bears this burden

There are days it could destroy me

But it doesn’t

She simply motivates me to keep going

She pushes me to be a better person

A better mother

A better human

Often without saying a word

Sometimes in her dark room we’ll share

What we worry and wonder about

Sometimes we tell things we’d never tell another

Sometimes we laugh

Sometimes we cry

Mostly we learn things

Still after all this time we learn things

Like yesterday when I told her that I am luckier because I have her to keep me going

And she looked at me quizzically and wondered aloud

Why do you think I keep going?

And in that moment there was even more clarity

Daughters and Mothers

Mothers and Daughters

We worry and wonder

We argue and spat

We chat and share

We battle

Not each other

But this disease

Together

Different but the same

Pain, surgery, worry, wonder, loneliness, anticipation, anxiety, and sometimes terror

I hate every moment of this road she has to travel

But I am selfishly grateful for the quiet, determined way

She keeps me balanced and focused on what matters

So we can help each other

And remain

#Beatingcowdens

FOREVER

daughter 2

“BE the Change You Wish to See in the World” – Ghandi

be the change

With another fall season upon us, life is in full blown crazy mode.  And, to be honest, we wouldn’t have it any other way.

Yesterday, my 12 year old FINALLY throughly enjoyed a Halloween.  It was such a thrill to watch.  FINALLY, she was able to trick or treat, EAT a few treats, AND keep up with some serious walking with friends.

Of course, she slept until almost 1 pm, even with the time change, and woke up unable to move her AVM knee.  These are the repurcussions we expect.  She is not “normal,”  but when she can pretend for a while when it really counts… well that is a great success.  And even as she lay still most of the day, she smiled.  She sang.  Joy.

Fall is full of things, and so far she’s managing nicely.  With a marking period to end Friday, Pupil Path tells me grades are at an all time high.  Practice 4 times a week has her swim times at an all time low.  And, drama twice a week is leaving hopeful anticipation as “The Wizard of Oz” is soon to be cast.

She is working with me to plan our second fund raiser in February.  We chose a date close to World Rare Disease Day, with the continued desire, and intention to bring awareness to our rare disease, and over 7,000 rare diseases worldwide that affect 10% of the world’s population.  We are acutely aware that to be heard, we need to join collective voices.  Individually we matter little to most of the healthcare system, overwhelmed, uneqipped to diagnose and treat us.  Together is the only way we have a chance.

Last year we raised over $12,000 and donated it to the PTEN Foundation (www.PTENfoundation.org) and the Global Genes Project (www.GlobalGenes.org).  This year we hope to exceed $20,000 in donations.

We have brought in Bob Jackson, a performer from Walt Disney World.  He will be flying up to entertain our guests.  Our whole family LOVES Bob, but Meghan especially will not hear of celebrating a birthday until Bob sings to her.  We’ve spent her last 8 birthdays at Disney.

Here is a youtube video that is a great indicator of the FUN time Bob brings!

We have lined up sound with Partners in Sound, and we have Balloon Charlie returning to also help entertain the children.

We have established a children’s menu in hopes that families can enjoy the afternoon out together.

There will be raffles and lots of laughing.

There will be comfortable JEANS and good friends.

We are setting up a facebook group called Jeans for Rare Genes 2016 Staten Island, and we encourage you to join.

We have tickets to the event available through Jeans For Rare Genes 2 – Tickets and Donations link

Meghan is living life as a 12 year old who just happens to have had 15 surgeries.  She is a 12 year old who just happens to have a Rare Disease.  She is a 12 year old who realizes that as challenging as life is, so many others suffer worse.  She is my hero.  She is MY role model.

Together we will make Jeans for Rare Genes a thrilling success.  Hope to see you there!

Time with
Time with “BOB” our favorite entertainer…

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.

ecard 2

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.

ecard 4

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.

ecard 5

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.

ecard 1

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…

The Heart of a Champion – an open letter to my daughter

Dear Meghan,

Today Daddy and I watched you swim in the Silver Championship meet.  It was your first qualifying meet, and it won’t be your last.  We find it amazing that you qualified, and for the 100 butterfly no less, in only your second year of swimming.  To say we are proud would not even begin to define how we feel.

Today was just another example of how you amaze us, astound us and impress us.  I know, parents are supposed to be proud of their kids.  I get it. But, when I think of what you go through each moment of every day, I truly am left in awe.

I get that you like swimming because you can feel “normal.”  There is no special treatment in the pool and the clock forgives nothing.  Cut times are clear and either you make it or you don’t.  Believe me, I don’t look to make excuses for anything or anyone.  You know that I can be kind of tough.  (I get that from Grandma, along with a bark that’s worse than my bite… :-))  But sometimes in those moments when you are your toughest critic you have to allow yourself the same forgiveness your warm heart offers to others without hesitation.

affirmation206

 

Living with Cowden’s Syndrome is a tenuous balancing act.  To stay on top of things the way you do takes intense effort.  I think most people would be physically and emotionally exhausted to live your yesterday – let alone your every day.

Last night when your back gave out, and the pain was too intense for me to even touch you, I gave you every out.  I gave you every excuse not to swim today.  You wouldn’t hear of it.  Your hips, the exact point you need your force to kick for your favorite butterfly were tender to even the gentlest touch.  It took you hours to rest because your body allows nothing to contend with the pain.  So I held your hand as you wiggled and squirmed for hours.  I reminded you I loved you as you desperately tried to rest.  I stroked your head when you finally passed out from exhaustion.  And I was glad the lights were off to hide the tears that stained my face.  Tears, not of pity, but of grueling agony of watching my dearest love suffer some more.  I knew as I laid there it was unfair.  That your knee was still hurting too, and now your back.  I knew I made no sense for all this to be coming the night before something you wanted so badly.

A-champion-is-someone

 

That defines your life.  Sometimes the hits are small and consistent.  Sometimes they come out of nowhere, but you just keep going.  You just keep fighting.  And truth be told, you inspire me to so the same.

Yesterday we went to look at shoes.  You’ve been complaining for months that your left sock is tight.  The orthopedist measured your feet and acknowledged the 1cm difference between them.  But, I don’t think either of us took in the reality until we were in the shoe store and saw this.

Left Foot
Left Foot
Right foot (AVM leg)
Right foot (AVM leg)

Another realization that we needed to go about things a different way.  So we picked out your shoes, ASICS GT 2000 3 in a 9.5 and a 10.5 and we spoke to the store manager at Dick’s.  He will help us.  Because we asked.  But, I know it got into your head.  The wonder about the upcoming surgery in May and the worry about what this AVM is doing to your knee in its spare time.  And I HATE not having any answers for you.  But I don’t.  I can only promise to be with you every single step of the way.

And as I got your pills out yesterday morning, and I helped open your thyroid pills, I thought about the year since you had a complete thyroidectomy.  It was just over a year ago you became a thyroid cancer “previvor”  when your 19 nodules, including three precancerous ones, came out with your thyroid.  It occurred to me for about the 5,000th time this year, that your thyroid is STILL not balanced.  We don’t give up.  We keep trying.  But its you who has to wake up every day and function  ok soar, with levels that would leave people 2 and 3 times your age crying in their beds.

So when you took the block today, I took a moment to take it all in.  I took a moment to take a good look at you, and I swear I could see the heart of a champion beating in your chest.  I saw your green and black suit, and your prescription goggles, but in that moment I saw your raw heart.  I saw the feisty determination that gets you through each day.

7ebd4451f512f1bcda44e2ca17b79368

 

You might not have seen your best time on the board.  But, me, I saw a champion.

The free dictionary defines a champion as:

cham·pi·on

 (chăm′pē-ən)

n.

1. One that wins first place or first prize in a competition.
2. One that is clearly superior or has the attributes of a winner: a champion at teaching.
3. An ardent defender or supporter of a cause or another person: a champion of the homeless. (or those with rare diseases – Ok I added that)
4. One who fights; a warrior.
And while you may not get a first place medal, you have won by walking through the door.  You have overcome greater odds than anyone ever really knows.
You take the high road, even when it’s the tougher one to walk.  You put other people first.  You advocate for those less fortunate.  You stand strong for what you believe.  You excel in school.  You soar at your extra curricular activities, and even within the pain that is relentless, you are an athlete too.  You my girl, are a warrior, a true champion.  Because as you get older you will come to realize that success is not defined by the highest grades, or the most first place ribbons.  Success is defined by your character, by the person you are.
sports-inspirational-quotes
So my girl, when you lay your head on the pillow, know that I admire you with every aspect of my soul.  Know that I respect that you daily work to be the best YOU, you can be.  Know that YOUR BEST is ALWAYS good enough.  Know that your compassion changes people.  Know that you, in your own way are making an impact in this world.  And most of all, know that you have two parents who love you more than you can possibly understand.
Thank you.  For being more than I could have ever hoped for in a daughter.  For even though we will hit rocky roads sometimes, we have seen so much, side by side and hand in hand.  You my girl, have the heart of a champion, and there is no one I’d rather travel this bumpy road with than you.
All my love always,
Mom
quote-athlete-inspirational-motivation

4 Doctors and a Dog Surgery

Before the school year closed my principal told my daughter to do whatever she had the urge to this summer.  Knowing she was a good kid, she understood his meaning.  He told her to play hard, and not worry about getting hurt, or hurting.

When I shot him a look, he laughed and ignored me.  Speaking right to Meghan, (referring to an event at school last June where she climbed a rock wall and ultimately needed hand surgery) he asked her if she would climb the rock wall again.  She said, “Definitely!”

He smiled at her, knowing he had left his mark in the just over a year she spent at our school.  Her confidence was up, and she knew the satisfaction of completing a task, and sometimes even winning – far outweighed the physical consequences that simply seem an inevitable consequence of being her.

And yes they are all about the same age, mine's just REALLY tall!
And yes they are all about the same age, mine’s just REALLY tall!

 

 

Turns out that very conversation was replaying in her mind as she was first to cross the finish line in the “Fun Run” this morning, held annually in memory of my cousin Meghan, her namesake.  The pleasure in her eyes outweighed all other things as she held it together long enough to get in the front door before she asked for ice.

Reminding me today as educators we shape lives in ways deeper than the classroom.  I am grateful…

school closed

Meghan needed this morning.  As a matter of fact we needed it – so badly that I think even the rain knew.  And maybe my Dad, my cousin’s “Uncle Tom,” was able to push those clouds out-of-the-way for a while.  His angel wings are 7 months strong today.  I think we got a special favor.

angels

It’s hard to believe we’ve only been out of school for a week.  My head is spinning.

Monday was the rheumatologist, full of confusion, still perplexed by pain without swelling that plagues so much of her body.  We spent hours, and arrived home minus a copay and with little to show for the trip.

Tuesday morning as we prepped for the GI, fortunately a local appointment, I got a call from the vet.  “I know Allie is scheduled to have her teeth cleaned tomorrow, but we have a cancellation.  Can you bring her today?”  All about getting things done, I got the dog in the car and dropped her off for a dental cleaning.

Of course, I left in tears because as tough as I want to say I am about the dogs… I am who I am.

So when they called me a bit later to tell me she would need 5 extractions, my heart almost stopped.  But, there was little choice so I consented.

We headed to the GI and had a pleasant visit there.  It’s always easy when things are going well, and generally the stomach is so much better since that stint in the hospital in May that we are clearly headed in the right direction.  We left with an appointment in 6 weeks, and told we could slowly, and carefully start reintroducing some of the foods stripped from her already restricted diet after the diagnosis of severe gastritis.

I picked the dog up a bit later that night.  And her pain medication, and her antibiotics, and as I was leaving even full of relief to see her, it was hard to tell what was whimpering louder, Allie, or my Visa.

 

Ouch!
Ouch!

Wednesday another local visit, this time to the orthodontist.  And instead of getting the news that the braces are ready to come off, she left  with more rubberbands.  The initial projection of having them removed in February seemingly a distant memory, and more conversation about her teeth and how “unpredictable” they are.  Why not? So to make sure that they don’t move too far in the wrong direction – we get to go back in 2 weeks, then in 4.  We’ve got time I guess.

Thursday, after feeling confident that the dog was on the mend, we left for the endocrinologist in NYC.  A somewhat productive conversation at least led to a mutual agreement that the synthetic medicine may not be working for her.  Her fatigue, I was told, “may not” be associated with her insanely elevated blood levels.  We’ll get the labs on Monday.  Two more 6 weeks cycles for the levels to regulate.  Then we try something new.  12 weeks is a long time to look at continuing to feel less than your best, but at least we left with a more open-minded doctor than when we started.

“This is getting old.”

I’ve heard that phrase a few times from my normally happy, easy-going kid.  At 10 years and 11 months she knows chronic pain, needles, surgery and waiting better than anyone should.  When she asks about my childhood, and I tell her that I also went to quite a few doctors, (although not as many as she does,) she tells me I am “lucky I didn’t know I had Cowden’s Syndrome.”

And as I am left to ponder what it must be like knowing more about genetics and your broken PTEN gene than you might ever want to, I think about how hard it must be.  The thoughts that go through her head, the level of her vocabulary, her insight.  So much to absorb, so much maintenance.  She gets that she’s lucky in some ways, but overtaxed in others… it is so easy to forget that she’s not even 11.

That is why mornings like this one have to happen.  That is why she has to sometimes taste a little bit of victory, when she feels like the challenges might swallow her up.  That’s why she has to run as if she has no pain.  That’s when she gets to be a kid.

fun run 1

This was the worst of it – this week, for doctors.  This was my worst scheduling job by far.  On the 14th she has one and I have one.  Then on the 15th I have 4. (Genius!)  And after that things lighten up considerably.

This week I settled some paperwork that has been lingering.  I fought over medication with the pharmacy.  I began the process of organizing a few very chaotic things.

Today we got to see some family.  Meghan got to hug three great grandparents, two of which are in their mid 90s!  We got to chat and to eat and take a break.

Tonight we will sit with a sweatshirt and watch the sky for fireworks.

Tonight I will thank the angel who moved the clouds away this morning.

Come on summer – we are READY!

“Dear whatever doesn’t kill me, I’m strong enough now. Thanks.”

I needed today.  For so many reasons.

Even thought Meghan had 2 appointments today – 11:15 and 12 – it was a good day.

We all slept.  Late.  All three of us.  I mean 10:00.  A good sign that we – all three- are shot.

IMG_0423

I mean, not a whole lot changed from yesterday, in that it took a full 10 minutes before Meghan’s pain subsided enough for her to walk.  And she was sensitive to the touch, so it was even hard to rub her.  But everything is a little better at 10 AM.

And there was the Isagenix shake – blessed by her GI doctor, back in the mix made with blueberry and coconut milk – that went down smoothly as she took the new regimen of pills.  I finally have a doctor who understands quality nutrition, and who “gets” that you can be sensitive to one type of milk protein and not another.

meghanleigh8903.isagenix.com
meghanleigh8903.isagenix.com

And after the appointments, even though I got the frustrating news that the “it’s broken, it’s fixed, it’s broken, it’s fixed” 1996 Saturn has likely advanced to “deal with it – it’s done” status, it was still OK.

Because we got home, and then Felix made lunch.  I stayed home with Meghan and her “better but not gone” stomach pain.

After that he took the working car to get the wood for the deck railing that has completely rotted out.

No one can really explain that – but we are kind of used to it.

The deck – pressure treated wood – was put together between 2000 and 2004.  By all accounts it is falling apart.  And its not from faulty construction.  The base is solid.  The center is stable.  But the galvanized screws are literally wasting away – and the wood, especially the rails, is rotting.  Maybe it’s too much sun.  Maybe it’s a stain product we used early in its life.  It really doesn’t matter.  It’s done and has to go on the budget list for a full replacement in the near future.  But for now we patch.

Triage.

triage

The bay window wins.  Installed in November of 2000 – on my birthday to be exact- the lower left corner of the center window has rotted out completely.  The entire window – hole in the house and all – needs to be replaced.

So while Felix was getting the wood, he priced the window  Tonight we have to do some comparison work.  Then the order has to go in.

But this afternoon I sat still.  For a few hours.  And I really, really, really liked it.

It’s easy to feel guilty.  That there are things that need doing.  There are people who could use our help.  And there are people who need to be visited.  And there are phone calls that need to be made.  But, last week my Mom told me if I didn’t take some time for myself I might lose my mind.  She’s right.  Although I could say the same to her, and most people I know.  It’s hard for any of us to just stop and sit still.

I haven’t written since Monday.  The arrogance I encountered that day kept me stewing for most of the week.  And… I don’t think I’m over it yet.  But I wanted to pull my thoughts together and go at it with a clear head.  But if I keep waiting for a clear head I may have to stop writing forever.  Because the pain my child endures – regularly- is horrendous and worsening.

If the purpose of this blog is to create a chronology of our experience with Cowden’s Syndrome – then it all has to be shared.  The good, the bad, and the arrogant.

A friend who endures more than her share of struggles with her children placed this on my wall this week.  I can’t tell you how many times I laughed out loud.

what doesnt kill me

 

Tuesday I called the surgeon’s office after school to inquire about the sonogram.  He spoke to me – to tell me that there is absolutely nothing wrong with her neck.

Insert sigh of relief here, right?

So I said thank you, and requested a copy of the report.  It was to be emailed to me within 10 minutes.

And while I was processing the conversation I had with the surgeon, I was contemplating what I would see on the report.  You see, the local sonogram bothered the surgeon.  So when we went to have it done I watched the screen like the hawk I am.  I watched every measurement, every angle for 30 minutes.  I SAW the exact dimensions from the local sonogram recorded.  And yet the report was the most incomplete one I have ever seen.  It simply said “normal” several times.  It was contained on one sheet of paper, unlike the three I had become used to.

I wanted to be relieved so badly.  I wanted to take a breath and say “whew!”

But I feel the lump in her neck.  And she feels it.

What I needed was a doctor to say, “It’s there and it’s fine.”  THAT would have been OK.  THAT would have settled me down.  But, to say it’s NOT there….  THAT leaves me with a whole other set of unsettled nerves.

And then the phone rang.  Again.  And it was the surgeon’s office.  His secretary told me we needed to go back for a follow up.  I was stunned.  And perplexed.

Why a follow up?  He just told me everything was fine!

The doctor just wants to see her one more time before the summer.

This from the same surgeon who three visits ago NEVER wanted to see us again.

So I set the appointment for June 16th.  And I wondered really what I am supposed to think.

So I got the number for medical records and I got a CD of that exam placed on CD.

I’ll bring the CD with us for the endocrine consult at ANOTHER hospital on June 12th.

And this isn’t even the pressing problem right now.  Or at least we don’t think so.

The next set of thyroid labs are going to be next week.  We need to see if this new dose is making ANY difference in her thyroid hormone.  If it is, well great.  And if it isn’t… someone needs to start figuring out what’s going on.

There is pain.  All the time.  Terrible pain.  Worse when she wakes up.  And, when she tries to walk, up the stairs.  Or down.  Or if she tries to lift something.  Or bend to pet the dogs.  Or run.  She made it through 18 minutes of swim practice on Weds.  Then I had to help her get dressed.

The pain varies in intensity.  But it doesn’t leave.  And she is frustrated.  And frightened.

Holding my head in her hands, looking me right in the eye, I received the admonishment a few days ago, “I am telling you I can not do this forever.  I can handle this pain a bit longer, but you NEED to help me.  I CAN NOT do this forever.”

worried mom - FBI

No pressure.

I get it Meg.  I get it.  I don’t really get your pain.  But I get the urgency.  I am all over it.  Trust me.

But that kind of pressure will wipe you out.

The GI on Weds. was happy with her progress.   The pathology showed cellular changes all through the GI tract.  She told us of the spot in the stomach she chose not to biopsy because it bled as the scope passed over it.  She gave us the “reflux” diet.  She reviewed medication and supplements.  She made sure I have an ENT appointment – for June 3rd.  She things the upper esophageal damage is caused by a chronic post nasal drip.  And maybe “fingers crossed,” that will be the throat clearing too.  Because if not there is another diet – with more restrictions on the horizon.  But we can’t race.  We will see her in the beginning of July.  We are clear on the directions.  Especially the one that said, “no pain medicine by mouth.”  The damage done by 4 years of NSAIDs will take months to reverse.  If we are lucky.  Her Cowden’s Syndrome cellular overgrowth reacted to the insult by thickening the esophagus at spots, inflaming the stomach and causing a real mess.

That doesn’t leave a whole lot of options.

So from 200mg a day of a strong NSAID to nothing…

celebrex100mg

I ordered some herbs.  Some that have anti inflammatory properties.  I have read and researched them and have sold them to her as the best thing since Celebrex.  They will be here tomorrow.  Let’s all pray I am right.

Some people think she exaggerates, because there are glimmers of smiles.  There are times when she laughs.  There are people who want her to feel better just because time has passed.  Trust me no one wants this more than her parents.

I would not trade her – or a moment of the last almost 11 years, but this constant struggle is wearing on us all.  We are isolated.  Family and friends alike are often unaware of what to say, or do.  We are afraid to eat anywhere other than home, afraid to be too far away in case her stomach hurts, afraid to be away from home for too long because the pain is often too much to bear.  We are lucky, fortunate, blessed, to have each other.  We are acutely aware of the struggles of so many, and we know we are far from alone when we say we are exhausted.

I needed today.  I did random things like taking the 5 gigs of pictures and video off the iPhone.  I uploaded them to shutterfly.  I combined them with the family photos and I placed the first print order since August of 2012.  We are up to August of 2013 now.  You see I used to be all over this kind of thing.  But life… it gets in the way.

And the nicest part about today was looking at the memories.  The smiles.  The happy times in those photos.  You see today I needed to be reminded…

And that is what today was about.

Because next week there is Field Day, with prayers that there can be mobility by then.  And next week there is blood work.  And next week there is swim practice, and so many things that we want to go very, very well.

Today, I needed today.