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Wednesday, January 8, 2020

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


Monday, November 11, 2019

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......


Sunday, September 15, 2019

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.



  













Monday, September 9, 2019

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 

Saturday, August 20, 2016

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 :)

Footprints and Angel Wings

When Carl and I had confirmation that Josiah was to be born with Down syndrome (DS), we reached out to several Down syndrome organizations as well as the local Down syndrome clinic.  We weren't calling, blind.  After the "markers" suggested a possible Down syndrome diagnosis, we read and we researched.  For about six weeks, we gathered every ounce of information we could get our hands on.  We read, researched, talked to people, joined FB pages, watched videos, etc.  Once the DS was confirmed, we didn't make phone calls seeking 'basic info' but rather "what's our first step, when the baby arrives?" Being a private person, these calls were out of my comfort zone.  I wasn't sure why I was making them, except I/we wanted to be completely prepared for the little soul we were being blessed with.  Carl handled a few of those first phone calls - it just seemed so strange, to me, to be reaching out to strangers, to discuss our child (who had not yet arrived).

It didn't take long to discover the unusual nature of the Down syndrome community.  Families who have a child, or loved one, with Down syndrome are automatically accepted into this community.  It is ONE community.  Yes, there are local groups, regional groups, etc.  But the ONE community is something I had never experienced.  On FB, Moms and Dads were congratulating us on the beautiful boy, not yet born.  Families were encouraging us to ask questions, to seek answers, and to be excited about being part of this special group of people.  Josiah was already leaving footprints in hearts, minds, and souls.  I'm not sure we fully appreciated the acceptance, and sense of family the DS community affords.

When Josiah was born, we received care packages from Down syndrome organizations from all over the country (the ones we had reached out to).  Cute onesies arrived in the mail.  Baby blankets and tote bags, bearing the name of the DS organization who had mailed it, appeared in our mailbox.  We received books, notes, birth cards, videos, and a plethora of informational materials on Down syndrome.  We were thrilled, but still taken aback.  By now, we were following other peoples journeys with DS.  We were watching other children, blessed by an extra chromosome, and trying to determine what was 'normal' for these children.  When were milestones being reached?  Were kids delayed in all areas?  What health issues were others coping with?  We were trying to set our expectations to be realistic, all the while trying not to delay growth due to limited expectation.

When Josiah was three months old, we found ourselves in the local Children's Hospital.  We were about to pass our three month old son off to a Doctor who would stop his heart, to repair it.  Josiah, like so many, was born with heart defects.  His had already caused pulmonary hypertension.  Though they had hoped to wait until 6 months of age, the pulmonary hypertension spoke to urgency.  If not repaired, Josiah would not survive.  While Josiah was being operated on, Carl and I waited.  That was the day that our full understanding of the DS community was realized.  A woman, in the Midwest, had posted a status update to her Facebook page.  In summary, she asked for prayers and positive thoughts for Julie, Carl, and Josiah (who was becoming a heart hero - a phrase often used, referring to children who have had open heart surgery).  Yes, I had friended this woman on FB.  Yes, I was watching her own beautiful daughter grow.  The fact remained, I had never met her.  She had never met me.  She took the time out of her morning to remember our family & ask for others to remember us, as well.  For the first time, Carl and I realized what an amazing community we had found ourselves members of.  Every child who gains their family access to this special club, leaves footprints behind.  They leave footprints in the hearts, souls, and minds of their families, but also the doctors, nurses, therapists, and specialists who work with them.  They unknowingly leave footprints with the other members of the community.

The DS community rallies around each other, every step of the way.  They are there to cheer on every victory, every milestone.  They are there to say, "It's ok, Mom" when you feel like you've failed your child.  They are there to give you tips on how to handle a school issue, the next IEP meeting, that problem with the therapist your child is working with.  The community is made up of people from all walks of life, all socioeconomic backgrounds, all racial groups, all religious groups, all over the world.  If you need advice, just ask.  There is someone out there, who will offer their support, advice, or opinion.

As the DS community cheers every victory, and supports every day to day struggle, the 'family' tie that binds us rallies behind a member whose loved one has earned their angel wings.  We laugh together.  We cry together.

As Josiah was still recovering from open heart surgery, Carl & I cried for baby R who lost his battle with pulmonary hypertension.  Later we cried for little E who became ill and was gone weeks later.  We cried for little K who fell & didn't have the speech to call out for help.  The list goes on and on.  Over the years, we have felt the pain of our 'family members' who have had to say goodbye to their little ones.  We have watched the leukemia diagnoses and followed the journeys: some to restored health, some who have earned angel wings.  In the midst of all the smiling pictures, funny videos, silly quotes, and milestones, there are members of this amazing community facing what no parent should ever have to face.

The past ten months have been a dichotomy of feelings, as I continue to grieve for Carl.  This past week, I have continued to see all the DS posts - the smiles, achievements, victories, funny stories, etc.  Then there was that one!  Little J who went into Cardiac arrest.  He earned his angel wings.  I don't know the family personally, but they are a part of the DS community family.  As we learned that J passed, the community grieved.  The parents don't know why their little boy was taken from them.  They are seeking answers.  I cry for them, as I know others have (and continue to do).

Our children, our families, our loved ones, our community, leave indelible footprints.  Those footprints begin forming a legacy.  Eventually, footprints give way to angel wings.  I don't know why in the DS community, we lose so many at such a young age.

"You were sent to me on angel wings.
You were perfect from the start.
A love I never knew before,
you left footprints on my heart.

You touched and blessed my soul and mind.
Then you began to soar
through the clouds, to Heaven's gate,
on angel wings once more"

Julie Stone                   

(in memory of all angels born still, too early, or who left too soon)


Sunday, November 15, 2015

Daddy's Gone

After being told that Carl was gone, life changed in an instant.  First and foremost, I had to tell people.  I informed Carl's brother who was already enroute to the hospital but now coming here.  I called my Dad.  I called my sister-in-law.  I called the Elementary School.  I was in disbelief, shock, and dismay. 

At 10am, Carl's family had arrived at my house.  Together, we headed to the hospital.  My family met us there.  A chaplain awaited our arrival.  Carl's Mom, brother, sister-in-law, and I headed to Carl's room.  The curtain was drawn across the room.  In the end, I chose not to witness what lie behind it.  The others did.  Heeding their advice, I held strong to the last images of Carl that were deeply embedded in my brain.  That was enough.

I returned to the waiting room.  Carl's belongings were brought to me.  His briefcase, a hospital bag, and his boots - the last items that he had touched, worn, and used.  It was surreal.  It was incomprehensible.  It was over.  My Love was gone, and life would never again be the same.

Everyone returned to the house.  Josiah arrived home at 11.  He was happy and blissfully unaware of the tragedy that had just taken place.  He knew not to be sad.  He knew not that he had just lost his Dada.  He smiled, laughed, and gave reason for us to carry on.

At 3:05, the big bus arrived home.  The boys immediately noticed that family cars were in the driveway.  They asked why.  They asked what was going on.  I asked them in and sat them down on the big beanbag.

It is heartbreaking to know that you are delivering the worst possible news to your children.  I remembered back to Saturday.  After talking to the ICU MD, I told the boys that Daddy was sicker than he had ever been.  I told them that Daddy was so sick, he might have to go to Heaven to be well.  The hypothetical had now become reality.  I reminded them of that earlier conversation.  I then broke the news that Daddy, in fact, had gone to Heaven.  In that moment, the world stood still.  Nobody existed but my children and I.  In a room full of people, I found silence.

The boys only reaction, in that moment, was of understanding.  The anticipated tears and meltdowns were null and void.  Soon after, they went on to play.  My heart broke as I knew the reactions would surface.  I didn't know when.  I didn't know to what extent.  Daddy was gone.  When was that information going to sink in???