Silence is… difficult and required

I always hated charades.  I stunk at it.  And I still do.

charades

I would have made a rotten mime.

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Forced down time.

That’s what surgery brings.

This time it brings silence as well- for at least the next 5 days.

Emoticon posing like “three monkeys”

I kept moving so fast through the last few months that maybe I chose to ignore the problem growing inside me.  I mean, ignore it in the sense of not writing about it too often.  Of course, I’m not foolish enough to ignore it…

It was last spring, right about this time that I started to feel a little hoarse.  I blamed it on spring allergies.  Except it never went away.

It always struck me as odd because it came at a time during the year I was teaching less, and testing more so there was less of a strain on my voice.

Once spring turned into summer, I had to accept “spring allergies” wouldn’t work.

I searched for an Ear, Nose and Throat doctor in Manhattan, in my network. I read bios, and surgical articles, because everything seems to end with surgery anyway.  So – I find its best to pick a good surgical record to start.  Negative, or realistic?  You can decide for yourself.

The first appointment I met the speech pathologist and the doctor.  Both took baseline screens.  I was told at initial consult in July that there was a “nodule” and a “striking zone lesion” on the opposite side.  I was told it did not seem “typical” of the nodules teachers usually get, and I was told at that initial visit I would likely need surgery in the future.

Healthy image
Healthy image

But, first I was sent to vocal therapy.  And while I scoffed at the idea, I know now how valuable the experience was.  I have always sent my daughter to therapy when needed, and marveled at the success I saw with OT, PT, and Speech.  But somehow for me, it was a tougher pill to swallow.   At first.

I think when I wrote about this last I had connected with the Vocal Therapist, a gem of a woman, and a skilled class act in Speechless – October 2016  And then there was a quick entry here Laugh Out Loud – November 2016,  Basically, the therapy helped enough to reduce the swelling, and reveal more issues.  In October I was told definitively that surgery was in the future plan.  I was told to continue to practice what I had learned in vocal therapy.   I was told to rest my voice when I wasn’t teaching, and to employ a slew of new speech strategies and exercises.  I continued Vocal Therapy through December.  It has been no easy task, and I am FAR from perfect at it, but I can say I’ve made improvements at least a third of the time.  Not too bad for a few months of modifying something I’ve been doing for 42 years!

The kids at school are used to my “tour guide” microphone, which helps me resist the urge to overextend my voice.  We got in a routine, as you do when faced with a new obstacle.  There is no other choice really, because as my friend says, we just “keep swimming.”

The plan was for me to return to the doctor in early April to set up surgery for the summer.

Except plans change.  And it was getting a little hard to breathe.  I felt like I had asthma symptoms more often than I am used to, and almost like a constant feeling of fullness in my throat.

I called the doctor to move the surgery up.  We set February 20th as the date.  Sometimes I just have to trust my instincts.  Except I got a call that the OR was closed on February 20th and I had to take either February 17th or wait till March 3rd.  And for a hot couple of moments I entertained February 17th.  Except that “Jeans for Rare Genes 3” was set for February 19th.  And, me being on total vocal rest while we entertained 120 people wasn’t a great idea.

January 31, 2017
January 31, 2017

I headed to see the doctor on January 31st and he found a new problem.  There was now a very large polyp extending over the vocal cords.  It was big and it had not been there in October.  I asked about the likelihood of it being benign and I was told he was 99% sure it was all benign.  I liked the odds, but still he agreed waiting till the summer wasn’t a great plan.  We settled on a surgical date of March 3rd.  Carefully calculating the number of days I’d need to be off of work before my return, we established it should still work.

Over the last few weeks I felt increasingly short of breath during mundane tasks.  I stayed calm.  I decreased my daily activity and moved a little slower.  I knew we could make it, and we did.

So, “Jeans for Rare Genes 3,” went off as a successful event, and yesterday morning, on the first anniversary of the death of my beloved Pop, I headed to NYU to have my surgery.  I left with the prayers of great friends and family, and the intense protection of one of my Guardian Angels.

The surgery went as surgery does.  It’s strange how it’s not nearly as anxiety provoking as it once was. The whole routine has a wild familiarity, from the intake to the recovery room.  I don’t get lost anymore and anticipate their words and requests.  It’s odd, and a bit strange this job of #beatingcowdens.  I walk dutifully to the OR and get settled under my warm blankets.  I expect the IV, and the burning of the anesthesia.  I know the mask will be the last thing I remember before the recovery room.

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And its amazingly less nerve wracking when the surgery is for you and not your child.

So the biggest polyp had increased drastically in size since January 31st.  It’s gone, and so are the other issues.  We wait on pathology and a follow-up next Thursday.  I’m on strict voice rest until Thursday at least, which requires me to really isolate.  Talking to my family is reflex.  And as I said before I stink at charades.

Before - 3/3/17
Before – 3/3/17
After 3/3/17
After 3/3/17

So we carry our phones.  I put my fitbit on rest. It’s off an in a drawer.  I’ve got my laptop in my room. I’m eating my Isagenix and diffusing protective oils.  I’m organizing my brain- a little.

I’m trying not to get ahead of myself.  I’m trying to address one day at a time.  This is not my strength.  It is in my long term planning that I strengthen my resolve and focus best on

#beatingcowdens.

For now it’s been about a day.  I slipped on about 20 words total.  Not great, but I never claimed to be perfect.  The funny thing about talking is you don’t realize how much you do it till you can’t.

The laughing is even harder.  My husband is funny.  It’s one of the things I love most about him.  How lucky and I as I heal to lament that my daughter wants to talk to me, and my husband makes me laugh?  I’ll hide from my biggest blessings a few more days.  #gratitude

 

 

 

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.

moravian star

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.

“Next Year…”

We left the house today with only the normal jitters.  We even had time for a few family photos.

rare meg

Rare Meg and Felix

rare mom and meg

I have been teaching for 16 years.

I have addressed hundreds of students, if not thousands through the years.

I pride myself on being able to get their attention with minimal effort, and keeping it in most cases.

Sometimes it can be a bit more trying – like a full auditorium, as opposed to a closed classroom, but with the right presence and message, it can be done.

I did not get to hear Meghan’s speech today first hand.  I was thrilled to see her happy smile when I picked her up.  I knew she felt it had gone well, and that was most of the battle won.

While she was doing her homework I watched the recording her para had kindly made for me.  I was awestruck.

Not only was I impressed with my little girl, and the clam, confident way she spoke, I was AMAZED by the quiet in the auditorium.

Now I know they are taught good manners, but this went beyond that.  She HAD them.  They cared about what she was saying.  They were interested to learn about Cowden’s Syndrome.  They were hanging on her words. The applause at the end confirmed it.   She nailed it.  Public speaking is not an issue for my girl.

The day followed with a Skype call to her friend Connor in Colorado.  They struggled with the video feed, but they had audio and will try again next week for the video.

I know its only the US, but “Rare Disorders without Borders” here we come!

Rare disease logo 2013

HUGE smile.  Giant fatigue.  Her day was a success.  And now, tomorrow, she will give her speech all over again to the 4th and 5th graders – her peers.  May it run just as smoothly!

Meanwhile, back at my school – the ribbons were distributed.  The jeans were on.  The kids were charged.

Many of them even decorated their doors with the Global Genes Project – denim ribbons.  This was a huge school spirit event.  I received cards, letters, and even a pack of thank you notes from one class.  It was beyond touching to see my colleagues, supervisor, and students, all in their jeans with their denim ribbons.

rare door 3

rare door 2

Rare door

“Hope it’s in our Genes”

We clearly are not alone.

My Mom and I
My Mom and I

All day long the photos came in.  My Facebook page was hopping.

My nephew’s PreK staff on Long Island, my friend’s Catholic School on Staten Island, a few ribbons to a local HS, junior class at another school wearing theirs to support a family member.  My sister had hers at work, and so did some dear friends.

“Next year…”

Next year can we do a fund raiser too?

Next year can we involve more schools? Maybe all of Staten Island?

Next year…

I got tons of requests, and offers of help.  We know LOTS of really great people.

Next year, maybe we will help raise awareness even more.

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But this year, tonight.  I am tired.

I am grateful.

We are smiling.  We are blessed.

Right now, Tylenol for her pain.  TLC for her nerves.

There will be time to plan for next year…