Blessings and Sorrows….

Blessings and sorrows are not mutually exclusive.

Disappointment can exist alongside gratitude.

You can have hope while being grounded in reality.

Faith doesn’t mean you’re never sad.

Laura Story wrote the song, “Blessings” many years ago.  It is a song that has played on repeat during a few of Meghan’s hospital stays.

The chorus,

“Cause what if your blessings come through raindrops?
What if Your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You’re near?
What if trials of this life are Your mercies in disguise?”

 Is full of seemingly opposite concepts.  Yet so often through our rare disease journey, and our Cowden’s Syndrome mountains, and Ehlers- Danlos obstacles, this song has just made sense.

And now, during this time of pandemic and isolation, and anxiety it resonates even more.

We are freakishly accustomed to isolation.  Passing through surgeries and rehabilitation, and hospitalizations and illnesses as if they are as normal as a traffic light on the corner of a city block, means that you look at things a little differently.  Any time not spent recovering is seemingly spent traveling to and from appointments that yield little besides new appointments.  And yet, their very existence can consume every spare moment.

Cowden’s Syndrome is a constant “flashing yellow,” a caution sign, so to speak.  It is a blessing that we are equipped with the knowledge that as a people so susceptible to a variety of cancers that we must pause to aggressively screen,often twice a year, for our most sinister well known risks, (breast, thyroid, uterus, kidney, colon, skin…) and that we must investigate each new bump or lump, because you just never know.

And yet that blessing comes sometimes through raindrops, of plans foiled, and journeys rerouted.   All worth it if we have remained as we say, #beatingcowdens.

COVID-19 has rerouted most of the world this spring.

And we have learned.

We feel.  We laugh.  We cry.  We sit still.  We take walks.  We eat together. We pray.  We read.  We pet the dogs.  We sing.  We celebrate.  We mourn.  We watch TV.  We act with caution not terror.  We care about others. We read. We learn.  We talk to each other.

We “attend” church weekly for the first time in YEARS, as we have a church too many miles from us with a message we deeply need, suddenly available in our living room.

We did not pass a single graduation sign without a moment of empathy for what the graduates missed.  We celebrated every birthday drive by with loud honking horns.  We sent virtual cards when the store wasn’t an option.  We thought about sports events and recitals and parades and everything someone, somewhere had their heart set on.

We talked about everyone missing something. Every house, on every street had plans interrupted, and life rescheduled without warning. “Everyone has something.”

And in the most unusual way, for the first time in a long time, we felt a camaraderie with so many.  Everyone’s life was upended.  Everyone’s.

Don’t misunderstand, I’m not happy about any of this.  I just feel like it is easier to talk to people.  That may sound odd.  But currently people “get” isolation a bit better than before.

As swim season cut short days before a college showcase she was prepped and ready for, it wasn’t just HER.

As the SAT, and ACT play miserable games with enrollment and dates, she is united with the class of 2021.

Remote learning was… well I’ll just leave that there and say, necessary based on the state of NY in April.

We saw a 20th anniversary celebration derailed.  And yet, we had the most incredible evening.

I cancelled tickets to my first solo journey, a PTEN conference that was to be in Boston.  But, I celebrated the fact that this time I actually WAS going.  I will get to the next one.

I took the refund for the missed Billy Joel concert.  It took 2 decades for me to get the nerve to want to attend any concert again.  It may take another 2 before I want to be in a crowd that large.

Disney – our August safe zone for 12 summers is cancelled.  There is no way I could do it under these conditions.  Just none.

There were tears cried for all of the above.  But, there was also the awareness of gratitude, for health of family and friends, for two secure paychecks, and extra time with two adorable dogs.

The maintenance appointments are beginning to get caught up.  Some have been live, and some virtual.  I am undoubtedly excited about keeping some virtual medicine where the visits will allow. So far we are all faring well.

We are staying close to home.  We are choosing our interactions wisely.  We are choosing not to be crippled with fear, but rather empowered with logic, faith and compassion.

And when we head out into the world we mask.

We look daily at COVID numbers around us, and quite frankly they are disturbing. Locally we are in good shape now.  But things change quickly.

We spend these days enjoying sunshine.  We are in gratitude for a beautiful yard, and thankful that swim practice has begun again.

I promised to not complain about the 5:45 AM wake ups. And I’m trying to be true to that.

We have real conversations here about a fall schedule, without letting it overwhelm our days.  We talk about scenarios.  Her sport is a fall sport and it grows increasingly likely that her Senior season is in jeopardy.

We have conversations about school.  We know that we want to return.  But we do not know if it will come to be, at least not right away.

We have summer goals.  They are different this year.  And maybe that’s not always a bad thing.

We allow ourselves to feel every emotion here.  And for us, it helps.

Whether you’re fighting a rare disease (or two) or wrangling a teenager, now more than ever we are one.

Forgive yourself.

Blessings and sorrows are not mutually exclusive.

Disappointment can exist alongside gratitude.

You can have hope while being grounded in reality.

Faith doesn’t mean you’re never sad.

#beatingcowdens

 

  • completing my first post from my iPad on the couch as the FOOT recovers from some pretty extensive, non Cowden’s related surgery.

Adapt.  Onward.

Connected…

I was staring at the screen looking at 14 other mothers.  Women who have at least one child with the same PTEN mutation my girl and I have.

A quick scan of the “room” on this Zoom call showed me newly diagnosed, seasoned veterans, moms of teenagers, and moms of toddlers.  There were some mother/child combinations, and some with “de novo” or spontaneous mutations.  We lived mostly in the US, although one joined us from Australia.  Even as I watched my screen and jumped in to the conversation where I could, my mind was racing.

I “know” at least a few dozen more PTEN moms, and yet, Facebook algorithms being what they are, the call notification didn’t circulate as widely as it could have.

A few of these moms “know” us from this blog.  That was flattering and mind-blowing simultaneously.

It was like a “first date” with old friends-ones who I’m not likely to meet in person any time soon.

Listening to each one talk I wanted to spend hours with them.  I wanted to hear their stories in intricate detail.  I wanted to know about overlaps and differences.

Each story made me feel like I could fill out a giant Venn Diagram.

As moms I am sure some of us are alike, and some different.  In some cases if we lived nearby we might be the best of friends, and in others mere acquaintances.

Yet I felt an instant bond with every single one, and as I am notoriously terrible with names I admit even writing a note or two next to some names to help me remember their story.

We all had a common desire to be heard, and to hear.  We wanted to be heard by our children’s doctors, which with only 2 notable exceptions as locations seems to be a coast to coast failure.  And we wanted to hear other stories.  We wanted to feel less alone.  We wanted to know what happened with other people’s children.

I think on this call my girl was the oldest at 16.5 years, but there were others who had been diagnosed longer, as she was already 8 when our diagnosis came in 2011.

I had plans to attend the PTEN Foundation Symposium in Boston in May.  My plane tickets were refunded this week. I had hesitated canceling even though I knew for weeks in my heart it was not to be.  I hesitated because I was just so excited to meet some more moms like me.  Moms who have spent their child’s entire life being detective, advocate, voice, cheerleader, motivator, educator, and have earned their own type of medical degree from decoding research they once thought was impossible to understand.

I know there will be other gatherings, and I am grateful to the PTEN Foundation for that.  But, the need to connect runs deep.

I wonder why I feel so compelled now to meet others.   I have been doing this quite a few years with only a small handful of PTEN moms.  And truth be told I’ve been advocating for this kid’s medical mysteries since 2003!

I just saw this shirt pop up in my newsfeed.  I’m well aware of how deeply ads are targeted to us personally.  And it definitely is true.  I am by nature more introverted, especially in large groups, finding it easier to write than speak.

Except lately I miss people.  Not all people. Don’t worry I haven’t totally lost it yet.  But, the kind ones.  I miss the kind ones.

Something about a pandemic can help you reevaluate the importance of connection.

My family of three has spent so much more time together than we have in a decade. It has been a blessing in this difficult time to reconnect.

I have spoken to a few more old friends too.  Previously we were too busy to text, and certainly too busy to call.

I have learned how easy it is to Zoom, and FaceTime. I know now the value of face to face contact – even through a screen.

I have to ask myself if in a different time I wouldn’t have made an excuse not to get on that call.

In my heart I know the answer.

And I’m grateful for the forced lesson in the value of connection.

#beatingcowdens

#strongertogether

Pandemic Got Your Tongue?

NYC #COVID19
NYC #Covid19

There are things you could do without ever experiencing.  Clearly #COVID19 is one of them.

I live in NYC.  I have lived here every one of my 46 years.

I was born and raised here.  I graduated from public school, SUNY and then CUNY.  I work in the elementary school I graduated from.  I have lived in the same zip code pretty much my whole life.

I watched my local community rise up many years ago when my young cousin battled Leukemia.  I remember that, even over 30 years later, whenever a neighbor I don’t know is in need.

I watched my local community, many aspects of which were decimated by the horrors of 9/11, rise up in indescribable ways.

I watched my community draw together again after Hurricane Sandy wiped out neighborhoods.

We worked together.  We prayed together.  We loved on each other.  We gathered together.  We shared what we had.

I live amongst compassion, bravery, dedication, resilience, tragedy, and grief.

I also live amongst some selfishness, stupidity and inflated senses of self importance.

The greatest city in the world gives you all that and then some.

Despite having a small social circle, I am a mother, a wife, a daughter, a granddaughter, a sister, a niece, a cousin and a friend.

I am a patient with a PTEN mutation called Cowden’s Syndrome.

I am a cancer survivor.

I have a teenager with 2 rare diseases, and a brain that runs 24/7.

We are immune compromised.

I am a NYC Public School Teacher.

My husband is an essential worker.

Daily the news reports are often silenced in my house.  I know what’s going on around me.  A few numbers across a screen give me what I already know.  Hope of blossoming spring has been muted by tales that nightmares are made of.

I spend the days trying to remotely engage young minds in math games.  It is, if nothing else, a welcome distraction.

Suddenly, this community that does so much better when we can gather together is isolated.

Our friends are sick and dying quickly.  To much of the country and the world they are numbers.  To us they are humans with names and families.  We can not visit.  We can not comfort.  We can not gather.  We are leaving our loved ones at the emergency room door, praying we will see them again.

We, alongside the whole world, are fighting a virus that seems to have a strangle hold on my home town.

People like to make themselves feel better, but the truth is this virus does not discriminate.  We can barely even find it, let alone attack it.

We are chasing it.  It clearly has the upper hand.

We have been told to #flattenthecurve but, I fear the sheer numbers of us make this so much harder.

My husband comes from work removes all layers, scrubs, showers, washes all outer garments.  He gave up public transportation to reduce his “touch points.”

We are grateful for the home we have.  We are grateful for each other, for the internet, for Zoom and FaceTime, and virtual church.  We are grateful for washing machines and space, and luxuries never to be taken for granted again.

We are grateful for computers that allow for everything from Advanced Biology to voice lessons and test prep.

We leave for 2 walks a day at off peak hours.

The stores I used to walk in and out of because I could, are saved for when lists accumulate and there is need.

We order food a few times a week, a calculated risk carefully played out because the restaurants that have openly supported our fundraisers through the years, deserve our support now as well.

The schedule has slowed from its chaotic pace.  Swim season just isn’t.  There is no college search right now.  Doctors are cancelling, and rescheduling.  Routine check ups are on hold.  And honestly I don’t mind.  Even this chronically painful foot is waiting its turn while really important things happen at the local hospitals.

We take this call to social isolation really seriously here.

Selfishly, I might even enjoy a little of this forced family time.  A year from now my girl will likely have her college chosen and be starting her transition out of our nest.

Having Cowden’s Syndrome has done a lot of work on my perspective through the years.  I’ve learned that you can’t keep waiting for it to be over.  That’s true of everything in life.

A dear friend has told me often, “You can have it all, just not all at the same time.”

You have to live each day, from beautiful to unspeakable.  It is the only way to preserve feelings of compassion, empathy and focus on the greater good.  You must laugh and cry, and scream and yell, and feel all the feelings.

I have scanned 3 and a half years of letters Pop wrote to Grandma in the years he was deployed during WWII.  Those years preceded a marriage that lasted over 70 years.  I think of them all the time, but even extra these days.  I think about how hard it would have been to socially distance from them, but also about the lessons they could have taught all of us in patience, resilience and sacrifice for the greater good.

I’ll use some of the next days to read every one of those letters before uploading them to create a hard copy to be shared in my family for generations.

There is a lot to be learned from the “Greatest Generation.”

Sometimes I get angry at flippant or arrogant folks I see, in person or on the news.  The people who think they are too good, or exempt from this global pandemic.  The people who don’t think they have to do their part.

Then, I decide to focus on the overwhelming number of people who are doing whatever they can to make this better.  All those essential workers we learned about in the first grade unit on “Community Helpers” are the ones I focus on with gratitude.

I am not better than this virus.  I am just as susceptible as the good people across the globe who are struggling with these infections.

I isolate not out of fear, but out of respect.

I isolate out of respect for those who can’t.

I isolate out of respect for our first responders and essential workers.

I isolate out of respect for those who are living with this virus.

I isolate because maybe one less person will get infected because I did.

I miss the way our city has come together in all other times of tragedy.

I miss hugs, and offering comfort and being comforted.

I will message the people I miss so much, and check in on them.

And, instead of complaining the time away I will spend more of it in prayer for those who need very much not to feel alone, reaching out through the technology I’m blessed to have, with gratitude that if I am forced to isolate I have a comfortable home and a few of my best friends to be with.

Jax is a welcome distraction.
Sweet April

#Family

#Flattenthecurve

#COVID19

Still #Beatingcowdens