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.

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