I Prayed for You

I prayed for you, before I knew your name. 

I prayed for you, long before I kissed your brow. 

I prayed for you. 

Shortly after high school, I became a certified home health aide specializing in the care of children with physical and intellectual disabilities.  At 18, I worked four part time jobs.  One, in the world of musical theater.  The other three, in the world of God's special children.  And how i loved that work. 

Sometime, near 1990, in a small town outside of Boston, I worked in a house where several young people were placed.  There, I met a prepubescent child who I shall refer to as Faith.  Faith had Down syndrome.  I worked several days per week, with young Faith.  I would wager a guess that I spent a year or so, working in that house. 

Faith was beautifully built by God.  Her extra chromosome, always evident.  Her behaviors, exhausting.  This beautiful soul had been taken away from her parents.  Her earlier years had been riddled with abuse, neglect, and trauma.  Despite being in a now-loving home, some damage could simply not be undone.  

I learned to laugh with Faith, during those silly moments.  I learned to hug her, during moments she would allow the touch.  She liked books.  She liked songs.  She enjoyed meals.  Bedtime, however, was generally a nightmare of yelling, outbursts, crying, hitting, kicking, and restraints (they were allowed, and used only for safety).  We called her Houdini; despite the restraints, she'd almost always find her escape.  Most shifts, if they had involved bedtime, I would leave bereft of energy. 

One such night, I returned home as I always did.  I retired to my room, thinking about the children so often in my charge.  My mind wandered seamlessly to young Faith, and her extra chromosome.  I tried to imagine what her young life had looked like.  I wondered who her parents were.  I wondered why they hurt her so.

Had this child been born the wrong gender?  Had she been born the product of rape or infidelity?  Had her extra chromosome been unwelcome?  Could her parents not find it in their hearts to love her?  Perhaps they were unwell and not to blame.  But I did blame them.  For in my mind, they were monsters.  They had mistreated their angel.  They had mistreated God's angel.  I could not understand.

It was then that I spoke a fervent prayer.  I spoke directly to God, in the sanctity of my safe and loving home.  In my bedroom, alone, I prayed.  I asked God some of the aforementioned questions & bemoaned the parents behavior, the harm they had caused, and my lack of understanding!  

And then I prayed for you.

I told God that if he ever had another angel with Down syndrome, who needed a home, to please consider me.  I prayed that should that day come, that I be in a position to embrace the blessing.  I promised the Lord, that if He entrusted such a precious angel to my care, I would spend the remainder of my life making sure His angel would know how much they're loved.  I prayed for God to hear me.  I prayed that He consider me worthy.  I said Amen.  My life went on.

So, approximately twenty years later, when I received word of Josiah's diagnosis, my mind quickly remembered a quiet night in an upstairs bedroom, in somber peace, and a prayer never spoken about.  In that moment I realized, God had heard.  But more excitingly, He listened.  He trusted.  He gifted.

Faith.  She was the catalyst to one prayer.  She was an unknown glimpse into my future.  For that, she will forever hold a special place in my heart. 

It was all Faith.  And so it was destined.  My prayer was answered.

And so you see, my beautiful boy, I prayed for you. 

I prayed for you, Josiah, long before I kissed your brow.

I prayed for you, my gorgeous son.

I will spend eternity ensuring you know how much you're loved!

The Story

Tradition.  Most people can identify at least one.  Perhaps it's a meal always eaten on a certain holiday.  Perhaps it's a movie always enjoyed at a certain time of year.  Perhaps a song.  Perhaps a flower, always planted at a gravesite on Memorial Day.  So many traditions.  They come.  They go.  They get passed down.  They fade.  They become forgotten.

Then, there are things so steeped in tradition, you wonder how you would live without them.  In our family, that tradition is simply referred to as "the story."

When I was a little girl, in the early 70's, I remember getting packed up on Christmas Eve.  We piled into the car and headed off to Bah's house.  He was my grandfather.  I remember the sounds and smells.  The house was always cozy.  It smelled like my grandfather's house.  As a young child, it smelled like Bah's house.  It smelled like Brownie, his dog.  It smelled of cigarette smoke; what house didn't?  It smelled of family dinners and sweet treats.  It smelled like a cottage and the perfume of my aunt.  Every year brought memories of the years before.  Every year played out, much the same.  We would all gather together.  My grandparents, Uncle, Aunt, parents, brothers, and I.  When it was time for "the story," I would take my place on the floor.  My Uncle and his wife, would sit side-by-side on the couch.  My grandfather would sit in his chair, and out came the little green book.  Silence would befall the room.  Bah would give a brief history, then he would read the story.  Everyone listened.  Everyone respected the story, as much as the tradition.

Sometimes, the grown-ups would cry.  I wasn't sure why the story brought tears.  Somehow, I didn't need to know.  I didn't need to understand.  It was part of the tradition.

After the story, we would eat.  It's how we spent Christmas Eve.  Every year.  Without fail.

To understand the depth of this story.  Allow me to back up.

In 1873, there was a young girl named Hattie.  At Christmas time, Hattie's Mama bought her a little green book.  Hidden within it's pages was a beautiful story about a Father, his children, Christmas, loss, and the awakening of renewed hope.  On Christmas Eve, Hattie's Mama read that story to her little girl.  In 1874, that story was read again.  We will never know if Hattie requested the story, or if a parent simply made the decision to re-read the story.  What matters is this....in 1873, a tradition unknowingly began....

It has been said that on one Christmas Eve, many moons ago, my grandfather had not yet arrived home.  It was a cold New England night.  Snow was blanketing the earth.  Family had gathered, as it had since 1873, wondering if the story would be read without it's typical narrator.  But, alas, much like an old time Christmas movie that leaves it's viewers with goosebumps and tears in their eyes, my grandfather came through the door.  He made it home for "the story."

Every year, family makes it home for the story.  Every.  Single.  Year.  Without fail.

In the 80's, there was the wayward son.  He lived in Maine.  He had a contagious laugh and a heart of gold.  He loved and was loved.  He was not, however, always completely dependable.  This particular year, I wondered if he would miss our annual Christmas Eve tradition.  But, like the grandfather decades earlier, he arrived a day or so before.  He arrived like a scene out of the Beverly Hillbillies... driving an overflowing truck loaded with he, his wife, their animals, various belongings, clothes, gifts, and assorted treasures.  At the sight of him, I knew it was Christmas.

Yes, "the story" has endured.  It is so steeped in tradition that no one would consider being absent from it.   Every year it somehow becomes more important.

It took years for me to understand the behavior of my elders.  As my grandfather aged, his wife long since buried, the tradition of the story was moved to my parents home.  When my grandfather died, it was Thanksgiving.  I was about 10.  Before the funeral, our family gathered in a quiet room, near the casket.  We listened to the tape recording of Bah reading the story.  I cried.  It was the first time I cried for the story.

The story, itself, is not particularly sad.  It tells the tale of a father, much like Scrooge, who needs help to find the spirit of Christmas.  The story is so much more than it's words.  It is wrapped up with the memories of past Christmas Eves.  The story somehow absorbs every family member.....every sight, smell, and gathering.  When the pages are revisited, the story brings it all back to you.  It is history revisited.  The tears are for those no longer sitting by our side.  The tears are for those we long for.  The tears are for the past, the present, and the future.  When the story is read, it is timeless.  It is the past, the present, and the future.

The year after my grandfather died, my Dad became the patriarch.  He read the story and many of us shed tears for the generation that had passed.  And so it goes, year after year, the story is read.  The tradition continues.  From time to time, we face a gathering with a new empty seat.  In 2010, the wayward son (my brother) did not arrive for the story....the story was difficult for him.  He arrived hours later and made an appearance.  The following year, 2011, the empty chair was his.  He had joined the family members who had gone before him.  The story was read.  The adults cried.  The children watched quietly, like the generations before them.  Their turn will come.

And now, we rapidly approach the 147th year of a long-standing family tradition.

It's the year of the pandemic.  We've been told to socially distance.  Stay six feet apart.  Wear masks.  Celebrate only with your immediate household members.  Children may be carriers, but asymptomatic.  For some, it mimics a mild cold; for some, a death sentence.  A vaccine is just starting to roll out.  So, we shall do what's safe for all.  We will choose to celebrate from a distance.

I'm angry at this pandemic, for interfering with our tradition.  I miss my family but am grateful that they are well.  I am grateful that this beast hasn't taken any of them away.  I will miss the sights and smells, of our annual gathering.  I will miss the food and conversation.  I will miss the hugs.  I will miss the closeness.

Indeed.  This year will be very different.  We will do gift drop-offs and pick-ups.  We may exchange food/treats.  Some gifts have been mailed to their recipients.  We will still gather on Christmas Eve, virtually.  We will listen to the story "together" via video messaging.  We will wave to each other and shout phrases of love and good tidings.  We will eat with our own immediate family members.  We will open gifts in the sanctity of our own homes.  We will wake up Christmas morning to quiet homes without visitors or large gatherings.

This year I may cry.  I will cry because I miss my grandfather.  I will cry because I miss my brother.  My grandmother.  My two husbands.  I will cry for the family that awaits us in Heaven.  But this year is different.

I will cry because I miss my parents.  I want to hug my Daddy.  I will cry because I'm unable to bring "the story" to my aunt, who resides in a long term care facility; the pandemic makes that venture impossible.  I will cry because I miss my remaining brother.  Sister in law.  Sister.  Nephew.  Niece.  Family.  I miss the people who make me who I am.  I miss the people for whom my heart beats.  Yes, I expect I will cry this year.  I will hug my children.  I will enjoy Christmas with my children.  But, there will be tears.  Tears for the past, the present, and the future.

I will pray that next year is back to normal.  I will pray that we can all be together next year.  I will pray for no additional empty seats next year.  I will pray for our 148th year.  I know that whatever it looks like, in whatever way possible, we will be there.  We will be together again.  We are family.  It is our story.

It's tradition.

Tadpoles, Dragonflies, and Butterfly Kisses

When I started this blog, it was to share the life of our family and the 3 boys (the youngest of whom has Down syndrome).

Life got in the way.

Then tragedy struck (when Carl died).

Then life got better but busy.

Then tragedy struck (when John died).

So often, I want to write but this doesn't seem the proper venue for such writings.  As a result, I haven't been writing.

Up the Down Staircase will return to it's original roots.  This blog will refocus its attention on glimpses into family life, raising three boys & the youngest child - who happens to have Down syndrome.

If interested, please visit my NEW blog:

https://tadpolesdragonfliesandbutterflykisses.wordpress.com/2020/01/09/86400-seconds/

"Tadpoles, Dragonflies, and Butterfly Kisses" (on Word Press) will focus on all other matters that touch my soul and encourage me to put pen to paper.

If you join me there....I hope the words you read, will cause you to think, to laugh, to cry, and to feel inspired in some way.

❤

Julie

The Price of a Silver Lining

Years ago, I made the decision to change my mindset. I made a choice to be happy.  I made a choice to see the world as 'the glass half full.'  Though it took some practice, I mastered my new approach to life quite quickly. 

When I met my first husband, he called me 'Rebecca of Sunnybrook Farm.'  He would often say, "Well aren't you a f@#$ing ray of sunshine" (please understand, he was a city boy, a blues musician, and was born with an unfiltered tongue).  I never took offense.  My positive outlook made him smile.  My demeanor would rub off, constantly.  And so it was.  It was my new normal. 

Since the time of that profound transformation, I have had an unwavering ability to find the silver lining.  Face it.  There is always a silver lining!  Is there not?

At 15 weeks gestation, during our third pregnancy, we were told of the likelihood that our little sprout would be born with Down syndrome.  When suspicions were confirmed at 18 weeks gestation, we were abundantly relieved.  It was easy to spot our silver lining.  Josiah would not be born with Trisomy 18 or Trisomy 13.  The extra 21st chromosome seemed like a walk in the park.  We would be able to take him home.  Our little man would likely survive childhood.  We could plan a future for 3 little boys, who's growth we could witness and enjoy. 

When my oldest brother died, a profound dichotomy came to a crashing end.  He and I were twins, born ten years apart.  He was an addict; I was not.  The stress of being the 'big sister,' 'my brother's keeper,' and his 'safe house' ended in an instant.  I was the big sister; he was ten years my senior.  My Mom would never again have to worry about where he was, if he had food/ money/ shelter, if he was dead or alive.  The profound stress his behavior caused, was now replaced with grief.  Threads of silver linings, everywhere we looked.  No more of this.  No more of that.  Some hope of ultimate peace.

When my first husband died, the instant silver lining was that his pain had ended.  I took great comfort in that.  He would never have to have another surgery.  He would never have to take medicine again.  He would never be near-death again.  He could rest peacefully.  His spirit could soar, unhindered by the physical confines that held his body hostage. 

And so life continued.  There are silver linings everywhere.  I'm always looking.  I always find them.  Some years ago, I heard a saying that I just loved.  Though I don't know who to credit, and I'm paraphrasing here.  The gist was this.....you can live your life as if nothing is a miracle OR you can live your life as if everything is a miracle.  Given my knack for finding silver linings, I could relate so well to that concept.  Silver linings?  Miracles?  They truly are everywhere. 

When i was reunited with my high school sweetheart, I often referred to him as my silver lining, my second chance.  We married.  He took our name with ultimate plans of adopting the boys (whom he loved like his own).  On a Friday night, not long ago, he kissed me goodnight and retired for the night.  He never woke up.  12 hours later, he was cold.

For weeks, I found myself saying "He was my silver lining, my second chance."  Losing my first husband left holes in my very soul.  This reunification and love reignited, had been the happy ending.  I had never before considered that a silver lining might be temporary.  I had never pictured a silver lining being ripped, torn, or taken away.  Every trial, tribulation, and tragedy ended with a silver lining....which, in turn, brought renewed hope, peace, and joy.  Then this profound dichotomy hit me like a ton of bricks.

Silver linings come at a very steep cost!  If you have found a silver lining, you have first endured disappointment, tragedy, or loss.

Since losing my second husband, I was instantly able to recognize all the things for which I was grateful.  We had this amazing 'fairy tale', second chance.  Some never experience the kind of love that I've experienced twice!  I have amazing friends who came running on a tragic Saturday morning.  I have amazing tribes who helped with every single need, for weeks.  I have an amazing family who was willing to do anything, at any time, in order to provide support. 

Silver linings?  Yes.  I have new family members that have become so profoundly important to me.  Just last week, another silver lining presented itself.  It's mere existence gives me peace of mind that we will be ok.

Silver linings have come at a steep price.  Loneliness.  Shattered dreams.  Hopes lost.  Profound sadness.  Anxiety.  Insomnia.  The "why's?".  Looking for someone, only to find their empty chair.  Longing for their voice, only to hear silence.  Memories of a touch you will never again experience.  The finality of loss......

Yes, the silver linings have come at a steep price.

Even in that, there's a silver lining of self awareness, strength, determination, dignity, and grace.  It's all cyclical.  As long as your willingness to find the silver linings remains unwavering, you will always find one.  When you do, hang on tight!!  Sometimes they are temporary......

When the Dust Settles

The Merriam-Webster dictionary refers to "the dust settles" as an idiom.  It's "used to talk about what happens when things become clear or calm after a period of change or confusion."  Example: "I'll call you as soon as the dust settles from the move."  When Josiah had open heart surgery, there was initial chaos (meticulously ordered chaos).  Then the dust settled.  The surgery was over; His risk of imminent death, all but extinct.  He was stronger, as were we.  Fear behind us, hope ahead.  When someone dies....the dust must settle....but when?  How?  What does that even look like?  These thoughts have been permeating my mind.

When someone dies, it is like a dust storm.  In our case, it came without warning.  It presented in the middle of the night, whilst we slept.  It's results were swift and mighty.  It left, in its wake, unimaginable destruction, and silence.

Since John's death, 15 days ago, layers of dust remain.  We clean but the dust has settled into places we haven't yet touched.  Imagine entering a room covered in a layer of dust.  You dust the top layers and think, "Great! I'm making progress."  Then you move one item.  Dust falls to the floor.  There is dust underneath the item you move.  It is cyclical.  It is repetitive.  It's a constant reminder of the storm that blew through.  It's a reminder that despite your effort, the dust remains.  Even when you can't see it, it is there.

When the dust settles, the dust may never truly be gone.  Your life remains the same, but oddly changed.  The world continues to move about, blissfully unaware of the storm you have endured.  You continue to go about your day; others may not see the difference.  You know.  You are forever changed.  You are dirty.  You are tired.  You wonder.  You question.  You cry.  You persevere.  You are you but you are different.  The dust is a part of you.

My perception of things "becoming clear or calm after a period of change of confusion" has been forever altered.  

Nothing about John's death, or how we experienced it, is clear.  Things are calm but only because we have a schedule that we do not divert from.

I don't know why I fell in love the first time, only to have to say goodbye.

John and I reunited because we still shared a love for each other.  We believed in second chances.  We believed in fairy tale endings.  We believed we had endured our own struggles to arrive at this happy ending.  We believed.

I don't know why my beautiful boys had to lose their Daddy.  When John entered their life, he was their second chance, too.  He confirmed that something beautiful can come from tragedy.  John had stepped up to be their Dad, without question or hesitation.  John was going to adopt them in the Fall.  I don't know why my beautiful boys had to lose their step-Dad, too.  Life is truly a mystery.  It can be sad.  It can be unfair.  Just like a dust storm, it can come in and permanently alter every aspect of your life.

I don't know when dust settles.  Maybe it never truly does.  Maybe we just adapt to it.

  

The Staircase of the Unpredictable

I wish I could tell you that a divine writer's inspiration brings me here.

I wish I could tell you that Josiah accomplished something so asounding, that I'm here to share.

This blog started as a way to share our life with our 3 boys, the youngest whom happens to carry an extra chromosome.  Our dreams of a diary, of sorts, in the day to day happenings of a family raising a child with Down syndrome.

In the formative years, there was daily inspiration.  The newness that Josiah brought was note worthy.  Heart defects.  RSV.  Hospitalizations.  Open heart surgery.  Early intervention.  PT.  OT.  Speech.  Milestones - mostly delayed, yet spectacular.

Preschool introduced new things to share.  In time, we discovered Josiah was more alike than different.  There became less things to share.  Milestones became further apart, but none-the-less stellar.  Life became slow but steady.

Then Daddy died.  That was 2015.

The boys and I recovered from our loss.  I returned to work.  I reunited with my high school sweet heart (John).  He vowed to raise my boys, as his own.  We played.  We danced.  We sang.  We laughed.  We lived.  We loved.

October 2018, we married.  It was our second chance at love.  It was our fairy tale ending.  It was proof that out of tragedy, comes something amazing.  

On Friday, August 30th, John became tired.  It was nearing midnight.  He had worked many hours that week.  We were preparing for our glorious 3-day weekend.  He said, "Well, I'm getting tired.  I think I'll go to bed."  We spoke of our love for each other.  He kissed my head & retired to the bedroom.

Little did I know that our fairy tale was over.  Little did I know that our second chance had come to an end.  Little did I know......

When I went to wake him up, at nearly noon, on Saturday morning, he was already gone.  He looked like he was sleeping.  He looked at rest.  He looked at peace.  He didn't respond.  He didn't move.  I took notice of how quiet the room seemed to be.

The tactile sensation is what bothers me the most.  Of the nightmare that played out that day, it's the tactile sensation that I can't shake.  He was cold.  "That's impossible," I thought.  "He can't be cold."  "He's never cold."  "This can't be happening."

It is surreal to say that I've been widowed twice.  I'm not yet 50.

That was 9 days ago.

I've continued to work.  The boys have continued to attend school.  We are ok.  We have each other.

I wish I could understand why this has happened; it is not for me to understand.

By getting up each day, I teach the boys the need to carry on.  By speaking John's name (and Carl's), I teach the boys the importance of remembering....the importance of carrying our loved ones in our heart.  With my tears, I teach them the value of sharing and expressing our feelings.  I hope when my children are old, they are able to look back and remember their Mama as facing life's trials and tribulations with compassion, fortitude, dignity, humility, and grace.

I pray my own reactions, expressions, behaviors, and attitude continue to be a positive influence in the lives of my children.

Up the Down Staircase.  It's all about perspective.  When you're at the bottom, you can always climb up.....

Don't ever lose hope!  Things always get better.

<3 

The Undetected Strokes

In the summer of 2015, Josiah's hearing continued to come into question.  Though no serious hearing loss was found, the recommendation for hearing aides were present.  As I tend to do nothing without full disclosure of information and examination, Carl and I asked that structural abnormalities be ruled out.  If Josiah's hearing loss was a result of an easily fixable abnormality, we wanted to examine that road first.  So, with no questions asked, a CT (cat scan) was ordered to examine the structural interior of Josiah's ears.  The result: no structural abnormalities found supporting a surgical option.  Instead, the CT scan made note of an unusual density to his cerebellum.  Further imaging, via MRI, was recommended.

Carl and I spent many an hour researching "unusual density to cerebellum".  The results left us no more certain about the meaning of these unusual findings.  "It could be something."  "It could be nothing."  "It could be related to the Down syndrome."  That's a clear as picture as we could form.  As Fall proceeded, Josiah was fitted for hearing aides.  We continued to wonder about the mystery now facing our son.  Carl passed.  Time passed.  In early December, I found myself driving Josiah to a local Children's Hospital for a scheduled MRI.  Josiah was sedated for the procedure, they obtained the necessary images, Josiah endured without complaint or complication.  I continued with life, still wondering what the findings might show.

In mid-December, I received the results of the MRI.  Although Josiah's brain looks different than an average brain, it looks "typical" for a child with Down syndrome.  Josiah has more white matter than those without DS, but typical of a person with DS.  I theorized that this might explain why people with Down syndrome are more likely to develop dementia in their 30's or 40's.  The MRI showed that Josiah had fluid in his right ear (which was infected).  There were the previously noted abnormalities within the structure of his ear but masses and tumors were ruled out.  There was, surprisingly, evidence of an old brain bleed - as evidenced by staining on the brain.  They stressed that it was old.  It could've happened during child birth or as a result of very early pulmonary hypertension.  Regardless, they voiced that it was not a current concern.  No lesions, tumors, masses, or fluid on the brain were found.  I called the neurology department and scheduled an appt for early January to discuss the findings and, more importantly, learn how these findings could impact Josiah.

The January appointment was cancelled by Children's.  They had talked to Josiah's pediatrician and were determining the best follow up plan.  I had the information (above) but still no clear cut answers as to what it all meant.  It took well over 2 months, but a follow up was finally scheduled for March.

In the wee hours, on a March morning, Josiah & I headed to the Children's Satellite location where we met with a neurologist and hematologist from the stroke clinic.  Yes, stroke clinic!  I finally received the clear-cut answers I was seeking.

Josiah had numerous strokes, as evidenced by gray matter in two lobes of his brain - the parietal lobe & the cerebellum.  The parietal lobe controls the "gps of the mind" - spacial awareness, ability to see peripherally, etc.  The cerebellum controls balance.  There were numerous areas of gray matter, consistent with numerous 'remote' strokes.  They are all old.  Although they, technically, damaged parts of Josiah's brain, they caused no ill effects.  Their best guess is that these remote strokes happened around the time of Josiah's open heart surgery - likely when he was on the bypass machine.

So, it is believed that Josiah had two kinds of strokes: ischemic arterial stroke & a venous stroke.  Due to the areas of the brain that were damaged, they did little to cause problems for Josiah.  Through historical documentation, as well as tests they performed, they do not believe Josiah's balance or 'gps' system have been negatively impaired.  Josiah's strokes are considered "silent strokes" as they happen, unbeknownst to anyone, and cause no impairment.  In a child who has had an ischemic arterial stroke (the one that generally impairs the gps system), a young child's brain will often re-map itself so the damaged area is of no consequence.  This is what they believed happened with Josiah.

The extra white matter, in Josiah's brain?  Not related to Down syndrome.  Rather, it is damage to the cells as a result of the earlier strokes.  The believe these strokes were a one-time incident.  They do not believe he is at risk for any further strokes.  

They will perform another MRI at the end of 2016 to make sure there are no additional changes.  If the 2 images look the same, no further follow up will be required.

Though stunned to learn Josiah had suffered from numerous strokes, I am thankful that these findings were discovered by accident.  It was not symptoms that drove us searching for answers, it was a Mom & Dad who simply wanted to rule out a structural abnormality within their son's ears.

I remain in awe of this beautiful soul.  Blessed with an extra chromosome, he courageously fought RSV, open heart surgery, and numerous remote strokes.  His brain?  It just remapped itself; No problem.

As I continue to climb up the down staircase, I remain in complete admiration.  I continue to smile at a life so precious.  I continue to point to the stars because nothing's going to stop Josiah from reaching his full potential :)