A Perfect Storm

 

Sitting, sopping wet, in the middle of the ocean, in your small row boat.  Your feet are wet.  Your fingers are wrinkled.  You are cold, exhausted, and often frightened.  There is no access to the weather channel.  Your connections to the real world have all but vanished.  You focus every ounce of your strength on keeping the boat afloat.

You try to maintain a sense of calm, but your insides are turning worse than after a serving of spoiled mayonnaise at a summer barbecue.

There are moments when you think.  Hope.  Pray.  That it will settle down.  There are moments when you dream of enough sunshine to shed your wet clothes and warm and dry yourself.  There are moments when you can almost see what appears to be a friendly ship in the distance.  And in those fleeting moments you even remember what it felt like to socialize, to chat, and to laugh – about every day life.

Your faith reminds you that Jesus is in the back of that boat.  You know better than to let your insecurities wake Him.  You know in your core that you are loved, and protected.  

And then another wave crashes over the side.  You can not put your hand on the oar.  You lock eyes with your husband in front of you – always with you.  You put a hand on your girl, sopping wet beside you.  You strengthen your resolve.  

I have been fading out of touch these last few months.

I love writing.  It is my therapy and my release.  It clears my mind and cleanses my soul.  Except there is a balancing act to be had -tenuously protecting privacy while fulfilling what we believe is our calling to share a raw, honest view of our lives “Beating Cowdens.”It is hard to realize breaks in time.  Things blend together so readily it is hard to discern where one event starts and another stops.  There is only rarely a pause between medical appointments, some for the same issues, some for new ones, and others for maintenance.  Some appointments are mine, and some belong to Meghan.  All but a few require hours and hours of travel.  It safe to say they cost us on average 5 hours a day.  But, those 5 hours are not of my choosing.  I can’t say, decide to get up at 5 – deal with the appointment and be ready to start the day at 10.  That’s just not how it works.  Most are scheduled somewhere between 10 and 3.  That means by the time we get home, there isn’t much time to do anything.  Or, we spend the day waiting to go – so there isn’t much to get done.  There are no summer day trips planned.  Making plans to catch up with friends is something we avoid – because we so often have to cancel.  The cycle continues.  There is just getting by.  And some dreams that maybe we can get to the beach one day this summer…

Somewhere early this year Meghan started to be done with it all.  This is not an easy place to be in by any means.  She is a month shy of 14, and this is her journey for the REST of her life.  Teenage years are nothing most of us would want to revisit.  The extra complications of finding your way amidst a chronic sense of isolation (the knee precludes too much walking, it prevents basic sports games most of the time, it leaves the competitor side-lined too much, the allergies mean the food has to be different, the pain is unusual and constant and managed in some “unorthodox” ways, the number of times she has to say “no” because she has an appointment, an ER visit, or something else medical is astounding and limits the invitations, ETC., ETC…) coupled with an understandably defensive posture, and a desire to just BE, can make for some lonely times.

 

Her sleep patterns went off the charts some time in February.  My sleeper just couldn’t fall asleep.  She’d lay still for hours.  Her pattern was restless and fitful.  I watched my girl pull away from her swimming.  I fought to push her.  Even after her best meet ever in March – I could no  longer get her up to a morning practice.

Meanwhile, I never made connections that are so clear now.  In January we were released from the Interventional Radiologist who had completed the 5 embolizations over 6 years on the AVM in her right knee.  He released us to the care of the orthopedist who had already performed an arthroscopic lateral release in 2015 to help shift her patella into place.  It had begun to slide as a result of residual damage from small amounts of lingering blood in the knee.  By early this year the warning signs had begun to develop that the knee was off.

A visit to the orthopedist in February confirmed what Meghan undoubtedly knew.  He offered her the chance to try to intervene conservatively and put a brace on to hold the patella in place.  Maybe it could “convince it” to move on its own…

She took it in stride, like always.  We bought leggings to accommodate the giant addition to her thin frame.  She dug in and pressed on.

While all this was going on the chronic congestion that had begun in November worsened.  The ENT noted swelling, but called it allergies, the obvious choice this season.  There was a nasal spray added, and a week of a decongestant.

Attendance in school started to be a struggle.  There was fatigue.  Low grade infections.  There was pain.  So much pain.

The chiropractor visits became more frequent.  The leg length discrepancy made more noticeable by the limping to accommodate the brace on the shifted knee cap.

My surgery in March helped nothing.  There was so much vocal rest required it tossed us all on edge more than normal.

Swim practice was lessening.  Focusing on school was a chore.  Sleep was becoming near impossible.

The breathing worsened.  We justified the “worst allergy season ever.”  Her voice started to feel the effects of this chronic congestion.

In April the inevitable was spoken.  The knee would need a repeat of the 2015 arthroscopic lateral release.  We wanted to schedule it immediately.  The first available day was her the opening night of her school play, a play she had earned the lead in.  The next opening was almost a month later on May 20th.  We would have to wait.

The pain increased.  The frustration increased.  The sleep, and subsequently the desire to swim decreased.

The “Coaches Award” at the swim dinner made her feel honored.  She respects her coach so much.  But, she couldn’t reignite the fire.

The surgery in May went well, even though I had worried with the increased congestion that they could not put her under anesthesia.  But, it was fine.  She went through the 2 hours like a seasoned veteran.  That made number 18.

Rehab was tough.  The pain was significant.  But, it faded gradually.  Our favorite PT began to work her magic.

She got around on crutches, figured it out and made it work.  Again.  Always.

She got off the crutches exactly in time for 8th grade prom.

 

She was healing.  Physically.

She made it back into the water.  She swam the 18th of June, and the 19th too.  She started to talk about it in a more positive way.  The 20th was awards night for 8th grade.

My 8th grader was named Salutatorian for a graduating class of almost 400.  She received several academic awards that night. I sat in the auditorium with the last few months, and years running through my mind.  People knew some, but no one, not even I knew ALL of what it took to be her, every day.  And here she was, not only doing it, but excelling at it.  It was a good night.

Until she came home, and put up her feet.  And there, on the side of her surgical leg was a 4cm x 6cm mass, with rapidly increasing swelling.  Breathing, we strategized.

We took the crutches back out.  I stayed up most of the night making sure there was no bleed on the knee.  I sent her to school the next day to get her cap and gown and yearbook “like everyone else.”

Then we headed to the surgeon.  His nurse practitioner sent us to the ER.  They could not get their acts together and after 7 hours discharged her on crutches with a script for an MRI.

 And an IV that went unused…

She was to be “minimal weight bearing as tolerated.”  They wanted her back at the doctor that Friday.  I finally spoke up and said no.  She was going to her graduation Friday – NOT tainted by a medical appointment.  We settled on Tuesday.

However, with no answer, she was to graduate on crutches.  So, a friend suggested if she had to use them, she should “own” them.  My husband spray painted them white.

Sunday we drove to Long Island for that MRI.  The one I knew they would not do locally.  30 miles.  2 hours and 15 minutes home.  We caught up with some friends that day.  Good thing.  We needed them so badly.

As she was in the MRI machine for her knee she told me something was “blocking” her nose inside her head.  If you’re a Cowden’s Mom – you just went to tumor as fast as I did.  My head spun.

Monday the ENT was able to ease that worry.  He told us it was a mass of infection.  That likely she had had a severe sinus infection for 8-10 weeks.  He anticipated 14-28 days on biaxin to get after it.  That was alongside a short course of oral prednisone.  He nose was so inflamed there was almost no air passing.

A sinus infection usually has me out of commission in about 3 days.  I just shake my head in awe sometimes.

Tuesday the 27th we trekked out to the surgeon again.  The MRI showed the mass to be a huge fluid filled pocket.  There is also fluid all through the knee joint.  He looked, and looked.  He has done many surgeries.  He is skilled.  He shook his head and finally told us he did not understand.  He had “never” seen this before.  And now we had to wait for her knee to tell us what to do next.

Cancel camp.  No Drama Camp she had loved so much.

Postpone PT indefinitely.

No swim practice yet.

And there we were – facing another summer…

But somehow, all of this seemed to weave together.  The perfect storm.  The knee, the sinuses, the sleeplessness, the fatigue, the low-grade illnesses, the sinus infection…

Somewhere through all this we spent a few visits with a brilliant doctor who diagnosed Post Traumatic Stress Disorder.  PTSD.  Like with the soldiers, or other trauma victims.  “Secondary to significant medical trauma” she said.

It all made sense, except the “post.”  There is nothing really “post” about this ongoing scenario.

That, and the Salutatorian thing.  As impressed as I am – I am still in awe.

The journey continues, and we will above all things remain…

#beatingcowdens

Middle School is Hard

Middle School is hard.

If you’ve ever had a middle school student in your world, you know what I mean.  Like everything in life, the feelings are different for each of them, but if you’ve recently had someone pass through 6th, 7th, or 8th grade, you have undoubtedly  been with them through some trying times.

And that’s without factoring in the Cowden’s Syndrome.  Middle School saw 7 surgeries in 3 years.  It started with a broken foot and ended with Graduation on crutches for some extreme, and as of yet, unexplained knee swelling.

It also culminated with my girl as the Salutatorian of a class of close to 400.  At awards night Tuesday she received several other awards as well.  And, not a single one was connected in any way to the obstacles she overcame to get there.  It was a proud moment.  The desire of my teenager is to not ever be defined by her disease.  She wants no pity.  She’d love compassion.  Empathy, not sympathy.  She wants to achieve in spite of her obstacles and never BECAUSE of them.

As her Mom, I am insanely proud.  I am also inspired.  Every day we wake with a choice to make.  “The body achieves what the mind believes.”

Her mind believes that she will continue to overcome.  I have no doubt.  High School is on the horizon, and while I have no idea what the next few years have in store, I am confident she will continue to achieve success in all she does.

Cowden’s Syndrome messed with the wrong young lady.

The text of her speech from graduation is below:

Welcome and good evening, Mr. Mele, the administration and teachers from IS51, parents, family and guests, and most importantly, the graduating class of 2017!

 

Heh. I remember thinking to myself before I knew I’d be up here speaking to you today, “Wow, I feel sorry for the poor sap that is going to speak at graduation.” Yea, the universe has a funny sense of humor, doesn’t it? I’ve never been much of a writer, but I hope I at least don’t bore you to sleep. So, fellow classmates, here’s my attempt at leaving you with something “profound.”

 

This poem is called “The Victor.”

 

“If you think you are beaten, you are
If you think you dare not, you don’t,
If you like to win, but you think you can’t
It is almost certain you won’t.

If you think you’ll lose, you’re lost
For out of the world we find,
Success begins with a fellow’s will
It’s all in the state of mind.

If you think you are outclassed, you are
You’ve got to think high to rise,
You’ve got to be sure of yourself before
You can ever win a prize.

Life’s battles don’t always go
To the stronger or faster man,
But soon or late the man who wins
Is the man WHO THINKS HE CAN!”

 

Walter D. Wintle

 

Smart man.  

 

As I stand here today getting ready for all of us to move on to high school, I’ll say Congratulations! We’re done!

 

You might expect me to reminiscine about all the amazing memories I have of the last three years of middle school. While there were some good times, I’m not going to lie, middle school was three of the most difficult years of my life so far, and I’m sure I’m not the only one who shares that sentiment.

 

Middle school is hard, and some times can be super taxing. In addition to figuring out the school, the teachers, and the classwork, we have had to figure out ourselves, and each other. 

 

Let’s be real here. Bullying is a real part of these years.  Many of us have experienced it, and it hurts your self-esteem and diminishes your self worth. When people have hurt you enough, you can easily want to give up. Even if you can do it, your brain can become convinced you can’t. Therefore, you will fail. It’s cliché, but true. The body achieves what the mind believes.

 

The first step to winning, to taking that final step into your full potential, is believing in yourself.

 

That’s the trick.  The way to overcome the feelings of loneliness and isolation is to alter and control your state of mind. Your state of mind, and hard work, together form the key to accomplish your goals.

 

Now, while I’m here talking to you about a “winning state of mind.” I’d just like to put the disclaimer out there that I haven’t even close to succeeded in this mentality yet. But, I’m working on it. It’s hard. But, most things that are worth it are hard.

 

I once had a friend tell me something at one of our swim meets that I’ll never forget.  She said to me, “Stop. Breathe. Focus.”  Since I respect her ability in our sport so much, I shut up, and listened. It was one of the best things I ever did and it worked.

 

You see, I’m not talking to you about nonsense. As you head off into your high school, wherever it may be, you are likely to be at least a little nervous.  Remember, that your mind is extremely complex, and it controls and affects more than we could ever realize.

 

So, if you find yourself feeling like you’re not good enough.  If you find yourself worrying too much about what others think of you, or if you find yourself feeling like you are destined to fail, remember to “Stop. Breathe. Focus.”  You are enough just the way you are.  And, don’t worry, I’ll be standing in the halls of Port trying to take my own advice.

 

                                                    

Thank you, and once again, congratulations to the graduates.

 

#beatingcowdens

Portrait of Courage

You-Are-What-You-Think1

We have a short window of time from the point we meet someone to make an impression on them.

Think about it.  It happens all the time.  You pass by countless people, on line, in the grocery store, the receptionist at the doctor’s office…  And often, within moments you either remember a rude interaction, or you forget that they even existed.  The brain has to protect itself to some extent.  We can’t remember everyone.

But then there are some people you can’t forget.

I met her in the jewelry store a few months back.  I was buying a bracelet for my girl on a particularly tough day.  We struck up an easy conversation.  She was young, bright, and articulate.  She was friendly. She asked about my daughter and I shared.  I explained Cowden’s Syndrome and some of our most recent endeavors.  Then she nonchalantly told me she was a cancer survivor.  Melanoma she told me.  She was 22.  She told me she planned to be a teacher.  I imagine she will be a great one when it’s time.  At some point I brought up our trip to Disney, and how it might be time to take a break, and save some money.  She told me – wise beyond her years – that the bills will always be there.  Go.  Enjoy.

hope and spoon

Wednesday night I went into the jewelry store again.  I struck up an easy conversation with another employee.  I wanted to get a necklace repaired for Meghan.  It had a “hope” ribbon and a spoon.  She asked about it and I explained again about Cowden’s Syndrome, and the Spoon Theory.  When she brought me the necklace she wouldn’t take any money.  Instead, she offered me a “pay it forward” opportunity.  She showed me a “gofundme” page on her iphone.  She explained that this young girl, now 24, was battling stage 4 malignant melanoma, and if I felt so inclined, I could contribute there.

My heart began to race.  I recognized this girl.  She was the one, the cancer survivor who had helped me months prior.  I asked a million questions, rapid fire.  The kind woman answered them.  I was stunned.  A melanoma survivor, she found a lump a few months ago, which led to a CT and PET scan, and the determination that the melanoma had spread.  There will be treatment.  She is tough.  She will fight.

24 years old.

My sister is 25.  My brother is 25.  My cousins are right about that age.  They are all at various points of setting up their lives, not fighting for them.

She could have been anyone.  This girl in the jewelry store.  But she was dynamic.  Because apparently that is who she is.  She is the person that sticks with you.

Read her story here. http://www.silive.com/sports/index.ssf/2014/06/college_of_staten_island_to_ho.html#incart_river

And if you are so inclined, do what you can to help.

be the change

That is a conversation Meghan and I have all the time.

Life is not easy.  It is often unfair.  Frequently she feels like crap, and always she seems to hurt.

Yet, I tell her all the time, you have a short window where people will make a judgement about you.  It’s not fair either, but it’s true.

And when you live your life chronically ill and/or in pain, you may sometimes feel like you have to lie.

But I am helping her find the balance.  Ways that she can still be honest about what she’s going through, and say what she means, with an upbeat delivery.

i am one

Meghan has been blessed with a beautiful elementary school experience that spanned  6 years and 2 schools.  And although we elected to change schools at the very end of fourth grade, she can reflect and see the positive experiences gained in both places.  It seems everything happened as it should.

And in third grade, one of the roughest years of her life, she was met with one of the most compassionate women I will ever know.  A gifted teacher who cared so much more about the child than the curriculum.  And this year, when there was loss, deep loss, and surgery, and more major struggles there were several excellent women in her path as educators, and sources of strength.  And again, there was one with a sick child of her own, who just “got it” from the beginning.  My gratitude knows no limits.

to teach

Today we sat for a beautiful moving up ceremony.  Everything was perfect.  The length and content of the ceremony carried out through the careful precision of true professionals.  The children were calm and well-behaved.  Everything was smooth.  They all made it look easy, but I know all too well that its not.

Thirty years ago I walked across that same stage.  Today a lot of things came full circle, and after 17 plus years of teaching in my school, I sat in the seat of a parent, and I could not have been more proud.

She received two medals for school service, and she was beaming.  Then they called her name for the “Portrait in Courage” Award.  And the tears flowed.  Mine – not hers.  So touched by the time it took to match my child with an award that was a perfect fit.

See I always knew she had courage.  And I think most people who meet her would never deny it.  But lately, struggling with the pain, there have been some dark days.

couraqge 1

So we talk alot.  And I hope and pray that my words get through.

I tell her what a gift she has, that people view her has positive, and courageous.  I tell her that just because I happened to agree doesn’t mean the responsibility ends there.  When people view you this way, they look to you.  They feed off of your energy.  You inspire them to be better people.

It doesn’t mean you have to be positive all the time, because we all have our days – but it means most of your work has to be upbeat.

Today she hurt.  As she always does.  And I could see it.  But she never said it.  Tonight I felt her knee, and that all too familiar pulsing seems to be finding its way back.  She asks me not to hug her.  Especially in the morning – because my touch hurts.  There are dark circles under her eyes.  But we went out all day today, as a family.  And she was amazing.

She held that plaque in her purse.  She wore her medals.  She smiled.  She looked people in the eye.  She spoke.  She lit up rooms.

Danielle, from the beginning of my story, has never met Meghan.  Yet to me there are so many similarities.  I told Meghan all about her.  She gets it.  She gets a lot of things.  And as I struggle to help her find the gentle balance at 10 years old, of being positive and honest – I see role models for her in our small community.

“Portrait of Courage” indeed.  As her teacher said, she has endured more in her first decade of life than most, and is a force to be reckoned with.

meg awards

For Meghan, for Danielle, and for the others who we cross paths with every day – you inspire.  You lead by example.  You ARE changing the world.

Thank you.