Dark Days/Finding the Light

I am a March-August kind of girl. I love warm weather and lots of sunlight. Long walks are my favorite. There is nothing that soothes me more than putting on a pair of sneakers, putting my music on, and just going.

I find the fall stressful. Maybe it’s years of being a teacher. There is hopeful anticipation about school in September, but the organization and logistics take forever, and the fall germs are just… a lot.

Before I have time to look up, the days are getting shorter, the leaves are falling, and it is time to pull out the sweaters.

I go through the motions dutifully, cleaning and organizing, but I lack the excited anticipation people have when they smell pumpkin spice and start to see their breath. I just don’t get it.

I think I was always this way, but in fairness, so many emotional events in the fall and winter may have given me the final shove into my aversion for those seasons and bolstered my affinity for my spring allergies.

Given all that, it might seem contrary to say that we decorate early for Christmas, but we do.

Remember, I love the light.

Our tree is up by Thanksgiving, and the lights around the house are on every possible second. I love buying and wrapping gifts. I take comfort in our advent calendar and the excitement of the impending arrival of the baby Jesus.

My faith anchors me through the tumultuous turns life tends to take. It keeps me grounded and focused on the fact that this life is merely a stopping point on a journey to forever.

I grew up in a church. I spent so much of my life there as a child, and a teen that I could navigate the building with my eyes closed. I stayed at that same church after my husband and I met, and it was there that we married and had our daughter baptized.

And as ironic as it is, it is the place I had to walk away from when our worlds got turned upside down with all things PTEN and Cowdens Syndrome. I had to walk away from the place to continue to nurture my faith.

When you grow up in a community of faith, it is hard to accept that reality. I miss weekly services, Angel Trees, and Christmas shows. And sometimes that disconnect can make the dark days extra hard. Yet, in the apparent contradiction that is often reality, my faith has continued to grow through the years.

So, this morning my new normal involved my air pods, my iPad, and my orchids.

Today I “went” to church in Buffalo and in Sarasota, and I never left my house. I sang and prayed and smiled and pondered through Western New York Church Unleashed, and Faith Lutheran Church in Sarasota, Florida. The pastors are comforting and familiar, especially Eric, my brother-in-law in Florida, and also Roger, Jeremiah, and Steve in Western New York whom I have never met. The same internet which often isolates us from each other, keeps me connected to my faith through Advent and beyond.

I took some time with my orchids. My beautiful, perfectly imperfect orchids, that I feel a strong kinship with. Somehow, despite the odds, and without any traditional interventions, they blossom and grow in the most amazing ways.

I spend too much time alone and find it easy to be lost in, and overwhelmed by my own thoughts. Cowden Syndrome is ever present in our minds and bodies, even when the medical drama is on “pause.” The anxiety and anticipation of a lifetime of justifiable worry can make so many things, just hard.

Today I was reminded to give thanks in all circumstances. I was reminded to pray without ceasing, and I was told that you can have joy in your heart, even when you are not happy. 

Life is a contradiction. Emotions yield guilt way too often. But, I have learned that feeling all the feelings is the only way I will survive and thrive in this crazy life.

I do not like the winter. I will never enjoy the darkness. I love the lights of Christmas and I eagerly await the birth of the baby Jesus.

I promise to stop and smell the “orchids” while anxiously waiting for the first sneezes of spring.

Wishing you and yours peace throughout this season.

Ella, Buddy, and Jax bring us so much joy…

Sweet Sixteen

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Dear Meghan,

When we started this journey I never would have chosen this path for you.  I never would have selected a life of hospitalizations, tests, rare diseases and pain.  I would have chosen an easy life for you.  But, I didn’t get to choose.

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And, maybe that’s better.  Don’t get me wrong.  Everything that you have endured is overwhelming.  I wish I could take it away.  But, this adversity and these struggles, they have guided you as you have become a young woman I could not be more proud of.

This has been a twisty and winding road, and we are still only at the beginning.

Since you were very young you have had an unimaginable determination to accomplish whatever you set your mind to.  You never cease to amaze me.

From the days of Early Intervention and CPSE Speech/OT and PT, you just never quit.

You decided early on that you would do well in school.  And you exceed any expectation I’ve ever had.  You continue to seek classes because you genuinely want to learn new things.  You want to be your best self.

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You have always had the heart of an athlete.  You tried every sport you could and constantly had to reroute due to pain. Then, you landed in the pool.  The pain there is pain you can manage.  You are continuing to set, meet, exceed and reset goals.  Despite some seemingly insurmountable physical obstacles, you are an athlete.

You are deeply principled, a trait that has made you the young woman you are becoming.  It also makes me want to scream out loud some days.  Sometimes balancing socially was a struggle.  You look for the good.  You make your decisions based on the heart of the people you are with.  You would not compromise your beliefs. You had patience.  You have friends now who love you for being “fiercely yourself.”

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You have faith.  You believe in a God who loves us all.  You believe in GRACE and forgiveness, and even though you haven’t had a traditional church upbringing, I am proud of the questions you ask, and your desire to learn.  I am mostly proud of your heart.

Every day you are growing, stronger, wiser, and more confident.  Every day you are seeking out ways to improve.  You are constantly reflecting and growing.

No one outside of our home can fully understand this journey.  And while having TWO rare diseases I think may give us magical unicorn status or something, there is no one I’d rather have to traverse these trails with.

I could go on forever.  My heart spills over with love when I think of the young woman you have become.  I am full of anticipation and excitement about where the journey will lead you.

Know that forever and for always I will always be your biggest cheerleader and your most vocal advocate.  Know that I love you to the moon and back times infinity.  FOREVER!

Remember – sometimes we don’t get to pick our path.  Yet, if we open our hearts we can make the bumpy roads the most meaningful.

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I love you more – ALWAYS

Happy Sweet Sixteen!  Enjoy the day!

xoxo

Mom

And if you’ll take a bit of motherly advice – most of it can be found in these three songs….

I Hope You Dance…

 

Always Stay Humble and Kind

 

And, Know When To Hold ‘Em…

 

Forever #beatingcowdens (and #hEDS) with you!

These three remain….

these three remain

She walked away today.  She broke the rules.  She updated the plan.  On surgery number 11 she hugged us goodbye, and dry eyed walked through the secure area with two young nurses.  The doors barely closed before I dissolved, an exhausted puddle, into my husband’s arms.

That didn’t last long… You only get a moment or two to pull it together.  Then there was some really rotten cafeteria food, and WAITING.

They took her in at 3.  Three and a half hours after she was scheduled.  She was tired, and hungry.  And more grown up than I am at 3 PM when I haven’t eaten.

What a whirlwind!  Last Wednesday when we met the surgeon I was stunned by how quickly he wanted the entire thyroid removed.  Stupid Cowden’s Syndrome.  Makes people quick to pull out whatever seems to be misbehaving.  And (SIGH) they are usually right.

So as the week built, and the media started predicting the newest storm coming…. I brushed it away for a while.  I thought there was no way it could stand in the way.  The surgery was scheduled.  She was ready.  The throat clearing has reached epic levels.

Faith.

faith

Faith that it was going to be fine.  Initially faith that the storm would pass.  Faith that we would arrive on time to an early surgery Thursday morning.

Then, as happens so often I was reminded that FAITH, is not about me.  It’s not about my terms, or my time, or my way.  FAITH is knowing, trusting, believing. that God will provide what we need.  Whether it fits my plan or not.

So, as it became evident that there would be no safe way to travel Thursday morning, the phone calls began.

HOPE

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So much talk about HOPE this month.  Rare Disease Day, and “HOPE – It’s in our genes.”  Hope became necessary.  The faith and hope working hand in hand, with a few mini meltdowns of worry mixed in.  (HEY, I never claimed to be perfect!)

Back and forth to the surgical team, to the social worker, the secretaries.  Pleading.  Help us.  Hotel rooms that were available running several hundred dollars.  Offers from loving people to pay the bill.  But in the end money wouldn’t have stopped us.  We would have paid whatever we needed.  Because we had to be here.  Right here.  Right now.

So finally around 2 O’Clock on Weds. the call came.  “We can put you up at the Ronald McDonald House for the night.”  The fee – incredibly reasonable.  The location- perfect.  The reality – it was time to pack us up and be out of the house by 8.

Packing to take Meghan away is an adventure.  It’s not the electronics, or the “stuff” but rather the food.  Not even a major hospital can safely prepare Gluten, Dairy, Soy free food.  So there has to be a cooler.  Dad made fried chicken and plantains.  I picked up a pound of a Boar’s Head staple.  Cookies, granola, ginger ale, and other necessities.  Showers for all.  And Grandpa picked us up at 8.

We brought our own sheets – because you need to wash theirs before you go, and I doubted we’d have time.  I have to admit I was worried.  Really worried about what I would find through the doors.  But what I found was… love.

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I had heard of “The Ronald McDonald House- The house that love built.”  But I never gave it any thought.

Ronald McDonald House

I have a new charity on my favorite list.

We were welcomed – almost embraced by love and kindness.  There was a nonjudgmental compassion the radiated out of every staff member.  We were given keys to our rooms, and a tour with the rules of the “house.”  We were shown to our room only after Meghan was allowed to choose a few games to play – and keep – from their back room.  And, after she was given a backpack – with a special monkey, and a monkey blanket.

And on the return trip after the tour, before we saw our room – she was handed a warm, beautiful, blue and green blanket.  Her grateful smile. My heart – full of love in this house.

Our room was on the 11th floor.  Immediately I was at ease with the wood floors, foam mattresses, and EVERYTHING wrapped in plastic.  And there was the most beautiful view.

Lobby
Lobby

Lobby
Lobby

Our Room
Our Room

View out the window
View out the window

And as we each found our way last night into our own level of sleep, there was LOVE.  Everywhere in the room.

We checked out gratefully this morning, due to arrive at the hospital for an 11:30 surgery.

View out the window on this "Beautiful Day"
View out the window on this “Beautiful Day”

Waiting for surgery with the new monkey from the bag last night!
Waiting for surgery with the new monkey from the bag last night!

By 3:00 when she finally walked through the doors we had had to spend some time reminding ourselves that we were blessed.

A beautiful chaplain met us this morning, and clearly spoke Meghan’s language.  She compared God to a loyal dog… always there – forever understanding of our needs.

The doctors took extra time with someone else’s baby this morning.  I am glad they have that level of compassion.  I am glad they take their time.

Now they need to take their time with mine.

The last status update came 15 minutes ago.  They only began around 3:40.  Prep took a while.  She is stable, but its slow going.  What to expect from a Cowden’s Syndrome thyroid filled with 16 or more nodules?  Why make it easy.

Thankfully – she has some very special guardian angels on the case today.  And the prayers of countless others.

In our family of three its appropriate to remember “These three remain; faith, hope, and love – and the greatest of these is LOVE!”

More to follow as soon as I can…