“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.

Why worry?

That feeling.  The one where the doors are about to close, and you have to make a decision.  Are you going to fight your way out… or give in and let them trap you?

The pile of bills and papers on my desk increases by the moment.  I am usually more on top of it than I have been these last few weeks.  When I say bills, don’t misunderstand.   We can pay our bills just fine.  The ones I am referring to are the countless ones from doctors and hospitals who have billed incorrectly, or have not billed our insurance carrier at all.  I am not the type to write the check until they have exhausted all options.  I need to get to the bottom of that pile.  Make those phone calls.  Do their job for them.

Ok so it’s not quite that bad, but its getting there!

I could say I lack the time, and to some extent that would be true.  They want to speak during business hours. I am available ideally, from about 8 PM until 2AM.  But, I think I also to some extent lack motivation.  It would be prudent to address this cycle of bills before our next round of appointments next month.  Meghan has a few critical appointments during the winter break, and a few at the beginning of December.  Not to mention the eye doctor that I still haven’t rescheduled.  And the orthodontist – UGH, have to call the dental carrier too!

I am used to this to some extent. I have never known any different.  It has been my whole life and Meghan’s too.  Only during the last year did it get a name.  But the reality is still very much the same.  Constant appointments, hoping for no new tumor growth anywhere, followed by a cycle of bills that need to be rebilled and corrected.  It always works out.  But it does get a bit old.

This month it has been especially hard to focus.  Hurricane Sandy rocked Staten Island so hard that you would have to be living under a rock to be unaffected.  We are guiltily grateful that we were safe and blessed – but it is hard to get the images out of your mind, or the reality of the people that need help.  We all do what we can. Certainly a time to “Pay it Forward” here.

Then there is my dears sweet Grandma.  Grandma fell on the day of the hurricane, and spent the week recovering from head trauma in ICU.  She is home now, improving daily.  She is walking with a walker, weary of her time in bed, and anxious to move as much as she can.  She is such a fighter.  I am so incredibly impressed by her determination, but that is nothing new.  At 92 she is blowing expectations out of the water.  She is amazing, and inspirational.

And, so is my Pop.  He loves Grandma so very much that it is almost breathtaking to watch.  I have had the privilege of spending lots of time with them these last few weeks, and I am inspired.

Ok – December 30th it will be 67 years, but the concept is perfect!

I was lucky enough to spend the night on Thursday.  After everyone was ready to sleep and I was settled in on the couch, Pop brough his chair over to Grandma and held her hand as she fell asleep.  True love at its best.

Today, a VERY kind nurse.  A stranger to us, but a friend of a dear friend came and took the stitches out of Grandma’s head.  Like an angel sent to us, she lovingly removed the sutures, and later thanked me.  She was awed by the love she witnessed between my grandparents.  She would take no money.  She just was so thrilled to help.  She was our angel on earth today, saving us a potentially dangerous trip to Urgent Care.

Grandma doesn’t have Cowden’s Syndrome.  As a matter of fact I am increasingly certain I am the first in my family to inherit the PTEN mutation that causes Cowden’s Syndrome.  That genetic defect was handed over to my daughter as well.  But Grandma doesn’t have it.  I am sure.  What she has is an intense, loving, fighting spirit, and a desire to be well.   That – I did inherit!

The piles are larger than I like.  They are everywhere, and I admit to feeling a bit stressed about the lack of control.  But, I am smart enough to be aware of the blessings around me.  To be thankful, and have a heart full of gratitude.  For it is the little things that make all the difference.

“Keep Swimming!”

There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you.

I saw this today and it made me think of some of the people I have met over the last year.  Some of them don’t talk to each other any more, but I talk to them all.   It’s just who I am.

Today I couldn’t get a phrase, shared by one of those on-line friends, out of my head.

This has been a tough week for me.  It happens to the best of us.  I know I am usually pretty positive, but this week it has been harder than normal.  So when I shared some of my struggles she said to me…

I thought about it for a while.  And you know what?  It made perfect sense.  She has had plenty of struggles of her own.  Actually, she has had more than her fair share, but she brings it all to the table in the Cowden’s support group.  She shares her ups and downs, her struggles and celebrations, and she just keeps right on swimming.

I think, to some extent that is what we have to do.  Look it in the face, whatever it is… take  a deep breath and keep on swimming.

Today is my birthday.  I turned 39.  And I am proud to say it.  I have no intention of staying here either.  Next year will be 40, and so on and so on.

But with my birthday comes a flood of emotion.  This is just over a year since my Cowden’s Syndrome diagnosis.  It has been just over a year since mine and Meghan‘s lives were forever changed by the news that we carry a PTEN mutation, and that our bodies are inclined to create benign and malignant tumors – all over.

Keep Swimming…

It has been eight months since the “prophylactic bilateral mastectomy,” which turned out to be a life saving operation when the pathology revealed stage 1 DCIS.  I have almost adjusted to “the new girls,” but with each change of season comes the realization that the landscape of my body is forever changed.  Old familiar sweaters need to be replaced.  Nothing is quite where it used to be.

Keep Swimming…

It has been six months since the  complete hysterectomy.  The one Cowden’s Syndrome called for – way before its time.  So as my body celebrates 39 – my hormones clock in somewhere around 55.  And with no hormone replacements in the cards, we are learning to get used to each other.  Not uncommon for me to go from a turtleneck to a t-shirt.  Good thing there aren’t too many clothes to pick from.

Keep Swimming…

My birthday has been charged with emotion for years.  Ever since we lost my sweet cousin Meghan to Leukemia at the age of 6, it has been a harder than normal day.  Despite my best efforts, at some point emotion overtakes me.  I have always been grateful for our deep connection – so deep that I named my daughter for her.  But, somehow 21 years fade and the feelings are that of yesterday.  Oh, how I miss her.

“Angel Meghan” – 1987

Keep Swimming….

My Meghan faces scary appointments in the upcoming months, as we determine if her thyroid nodules are growing or stable.  Her health is always a tenuous issue, but her smile and positive attitude make it easier to press on.  I wait for word on my spleen and my kidney… silent benign tumors that will either prompt more organ removal… or not.

Keep Swimming…

GiGi fell during the storm.  Two weeks ago today we were very scared.  Today she walked with help around the dining room table.  Her feet still work, she was excited to discover.  Surely this is a realization worth celebrating.  Happy birthday to me.

Keep Swimming…

We went to Midland beach today with a few small things.  A donation a friend from New Jersey had sent, as well as a few things Meghan and I picked up this morning.  Sometimes paying it forward is the best birthday gift you can give yourself.  If everyone gives just a little – time, money, supplies – whatever you can… it makes a world of difference.  It matters.

These people.  The people of Staten Island, and Breezy, and the Rockaways, and all the other coastal communities devastated by Hurricane Sandy,  they certainly are showing their ability to…

…Keep Swimming…

Such an intense day.  At times I laughed.  At times I cried.  At times I was proud.  At times I was sad.  Life is changing every single day.  The ones you love, the places you are comfortable, and the people you are comfortable with – all transient.

I looked over my blog today.  It has truly been a journey.  And if you got this far you are reading my…

Who knew I had this much to say?
Amazing you people find this interesting! 🙂 But I am grateful to have you.

Tonight I am reflective.  I am enjoying my family and my wine.  I am thankful.  And I am tired.

It has been a long year.  But a productive one.  A year unlike any I had ever imagined.  The journey here is far from over.  I am thankful for my close friends, and my cyber friends.  I am thankful for those of you who read, who I will never know.  I am thankful for reality checks.  I am thankful for celebrations, and laughter and tears –  for they all make me who I am.

This is definitely a marathon, not a sprint.  Cowden’s Syndrome, like life, requires patience, flexibility, and endurance, as well as a well-rounded view of reality.

I am trying – with a little help from my friends.

Seriously, a Snowstorm?

I try not to make a practice of questioning God.  He always somehow proves to me He has it all together.  But sometimes, it is REALLY, REALLY hard…

Like tonight.  I am tired.  And I have some nerve saying it.  But I am.  Tired, and worried – about my family, both immdediate, (like Grandma, who is making physical improvements daily,) and my Staten Island family

We are a week, OK 9 days out from Hurricane Sandy.  I STILL know people without power.  Gas lines are no longer something you address on your lunch, and those are the minor concerns… the really minor ones.

We are, as I type, being pummelled by a Nor’Easter.  There is snow frantically falling.  As it falls the trees, shook by last week’s wind are getting heavier.  It is only a matter of time before they begin to fall.  We are expecting gusts of up to 50 mph tonight.

And all of this would be manageable.  If it weren’t for the absolute raw devastation my hometown is trying to endure.

I stayed away from the beach for a week, but yesterday we had the opportunity to do some volunteer work as part of our workday.  My trip to Midland Beach was life changing.

I posted the pictures.  The ones I saw on the news – of the places I had been.  And the streets I had walked.  And I thought I had some level of understanding.  I was so wrong.

As I drove down Hylan Blvd, and I saw the car windows open on the lot of the dealership, it occurred to me that they had been flooded out.  Knowing that they were a good distance from the water my heart really sank.  There was a smell of mold, and water in the air.  There was dust on the street.  There were mile long gas lines.  Was this my hometown, or a something out of a war scene?

I turned down New Dorp Lane, towards Miller Field, where my girl played soccer with her friends for a few seasons.  We always joked as parents about the chill in the air so close to the water, as we cheered on our “Ladybugs.”

Well it was still cold.  And there was no cheering.

The parking lot held a Red Cross truck, with food donations, a warming bus, several other food sites, some insurance vans, and lots of people milling about.  Maybe like a movie shoot – except this is real life.

I was looking for my colleagues, who I thought to be closer to the water, so I walked.  As I walked I could not help but stare.  I thought I had seen the devastation.  It wasn’t until I saw – that I was even able to process a FRACTION of the scope of this tragedy.  I had no one directly connected to me who lost a home.  Friends of friends, sure.  It’s Staten Island, and everybody knows someone, but my direct connection was minimal.

As I walked and absorbed what I was seeing.  As I let it pierce my subconscious…I felt like I was walking through the middle of someone else’s really bad dream.

On the windows of the houses closest to the beach, were stickers.  Red meaning uninhabitable, yellow meaning proceed with caution, and green meaning its ok to occupy.  Mind you these were markers of structural soundness with no consideration of water damage.  I saw very few green ones.

A few block farther back there were makeshift streetlights, because no one has power.  There were police cars, checking ID at the corners to protect these devastated people from looters.

As I got back in my car to head home I took a left instead of a right.  I ended up deeply imbedded in sights unlike any I had ever seen.  People’s entire lives, on their front lawn.  I had to photograph, simply because the reality needed to be shared – with my daughter, and others.

The front lawn of someone’s home

It took a few minutes to get back to the main street.  Moving slowly and respectfully as I passed a charging station, tents of water and food, people frantically roofing homes… I prayed.

And another one…

When I got back to Hylan Boulevard, I crossed over, headed for home.  I passed Meghan’s former endocrinologist’s office – supplies in the parking lot – seemingly gutted.  The water had devastated far beyond its apparent reach.

There are collections everywhere.  At my school, at the church of my youth, seemingly everywhere you turn.  Yet I am not sure all the supplies are getting where they need to be.  I am not sure who is going to help them. Really help  them put their lives back together.

That is one small corner of the loss in my hometown.  Had I continued to travel the coast I would have seen similar scenes replayed over and over.  God Bless the Sanitation Department for this herculean task.  God help us all as we have generated such an excessive amount of trash in such a short time period.

The work day ended then, and I headed to my other life.  To pick up my beautiful girl.  To visit with my grandma.  To vote, and to prepare all things necessary for the next day.  In our house we have some sense of normalcy.

Even though our own normal is peppered with Cowden’s Syndrome,  illnesses, and scans, and growths, and regrowth – it is our normal.  And once again, I would not wish to trade places with ANYONE.

God, seriously though?  As I pray for the hearts, and the minds, and the bodies, and the souls, of my fellow Staten Islanders – a snowstorm?  Please… help them Lord, to stay safe and warm and dry.  Wrap them in a blanket of Your love, and let them be warmed by the power of our prayers, unceasing.

Four hours in the gas line

I left my house at 8:25 this morning.  Admittedly it was later than I had wanted, but I struggle to clear my head in the mornings these days.

I drove for a bit, to all the local gas stations.  I even spent a few minutes on line at one.  Then I had my friend Siri call to make sure they had gas.  Nope.  Off that line too.

I drove past a station with a line that seemed manageable.  I asked a woman if they had gas.  She cried.  She said, ” I have been here since midnight waiting.  The delivery just hasn’t come.”

I finally ended up at Costco.  I knew they had gas.  If you are not from Staten Island, it will mean nothing to you when I say that the line began at Richmond Avenue by Best Buy, wrapped around Forest hill Road, onto Richmond Avenue, and the BACK into the Costco lot.  I estimated 4 hours when I got on.  It was 9:42

Four hours in the gas line is a LONG time.  I had more time alone with my thoughts than I like.  Thankfully, I had the iPhone to keep me a bit busy.  But in between games of scrabble, there was way too much time to think.

It was flat out unnerving, almost surreal to be on a gas line of this magnitude.  No matter how I tried, I couldn’t wrap my head around it.  I just knew I needed a full tank to get me through the week, so I waited.

I thought about the hurricane.  Hurrican Sandy.  My mind wandered to Hurricane Katrina, and the news coverage I watched I remember feeling like it was so far away.  No more.

The recovery efforts taking place miles from my home, in areas I have frequented my whole life.  I thought about their homes, and then I thought about the people- returning to find their homes uninhabitable.  And those who could get in, well – they had the job of a lifetime ahead of them.

I thought about the mother, whose 2 babies were ripped from her arms in the rising waters.  The babies, safe in God’s hands.  The mother – tormented for all of her days.  I prayed one of the many prayers I pray for her each day.

I thought about friends from work.  Their losses.  One with a new baby on the way.  Waiting to have the FEET of water that entered their home addressed.  Others who suffered damage to their own homes, and the ones whose parents or relatives homes were destroyed.

I thought of the trees that make my neighborhood so spectacular – ripped from their roots.

It was a really long line.  So I had time to reflect on the courage, strength and resiliency I have seen.  I thought about the downed trees, and the friends STILL without power of heat.

I though about the looters, the liars, and those taking advantage of the tragedy.  And I truly hope God has a place all picked out for them.

I thought about my little girl, and all she has gone through, and how she continues to make me so proud.  Today she put some of her favorite stuffed animals in a bag, “For the kids who lost everything.’

And of course, all thoughts always return to Grandma.  92 years old – most of it spent right here on Staten Island.  She and Pop married in 1945, and moved into their current home in 1956.

Grandma came home last night.  Late.  So there was confusion as to exactly where she was, but we hung together as a family and worked out some of the kinks last night.  I was anxious to see her, and Pop.

I thought about this year.  The magnitude of so many things taking place in such a seemingly short period of time, and I remember why I am so tired.  The diagnosis of Cowden’s Syndrome – so permanent and life changing, and even on top of that, this year has seen surgeries, cancer, loss of loved ones, more cancer scares, natural disaster… and I am only getting started.

I will shop for Christmas, but mostly I want Christmas to come, because its time to celebrate the birth of the Baby Jesus.  We need something to celebrate.

1:35  (3 hours and 53 minutes) Hungry and tired, I pulled up to the pump.  I don’t know – or care how much the gas cost.  I only know my tank is full – at least for now.

Home for a quick shower, then right to Grandma.

Family.  It always mattered a lot.  It matters now more than ever.

Christmas 2009

Race for the Cure (minus 1)

It won’t be nearly as much fun without my biggest fan!

Tomorrow morning I will gather in Central Park with some 25,000 other runners and walkers, survivors, and friends and family to support the Susan G. Komen Race for the Cure.  This will be my first race in a pink “survivor”  T shirt, insisted upon by Meghan, my biggest fan.

This was our year.  I registered Meghan as a “real” walker.  She got an official race day T shirt, and a number too.  She was so proud to be walking with her Mom, and Grandma – two “survivors.”  She was thrilled to be registered, and wear a number.  She was looking forward to waking up super early. 

Except, she won’t be coming.

At 6:30 tomorrow morning my Mom will pick me up.  We will each wear a special banner designed by Meghan.  We will pick up our friend, another survivor, and we will head to Central Park.  The car will hold one less this year, and if I might say so myself,

I thought it all day.  I thought it to myself.  I even hid in my room and cried a little, ok a lot.  I had quite the pity party going for my girl.  Asking over and over WHEN she is going to get a break, and WHEN is something going to go her way, and WHY can’t she seem to just have some fun when her HEART and SOUL are ALWAYS looking out for other people.  And, not to be surprised, she never said once all day that it wasn’t fair.

She encouraged me to go, even without her.  She said she was sad, and disappointed, but we made a date for the American Cancer Society walk on Staten Island in October.

She is asleep on the couch right now with 102 fever.  She woke up great this morning.  By noon she was developing a fever.  She was complaining of a headache.  By 2 PM she had cleared 102 and we headed out to the urgi center.  After an OBNOXIOUS 3 hour wait, we left with the diagnosis of  (“It’s probably”) strep, and (maybe) and ear infection.  I sometimes wonder if they train to be meteorologists, and end up as doctors – probably…maybe… UGH!

He second dose of Clindamycin will be at 11PM.  By noon tomorrow we will know if it was bacterial or viral because she should feel much better, and the headache – that always scares the CRAP out of me, should be gone.

By noon tomorrow I will be home.  Back from my race.  Full of conflicted emotions.  I have been to this race almost every year since 1998, but Meghan kept calling it my “first” race.  I will be glad to be with my mom and my friend, but really, what good is any race or celebration without your biggest fan?

Race for the Cure Logo