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 :)

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)

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???

Birthdays, Blindsides, and Goodbye Kisses

We couldn't believe how quickly September had come and gone.  We were in full-scale planning for all things Fall & Winter.  October is a jam packed Birthday month.  Josiah was about to turn 4.  My birthday is at the end of the month.  We had a birthday celebration planned.  Our annual trip to the pumpkin patch was approaching.  We decided, this year, to bypass the mall trick-or-treating and take the boys "real" trick-or-treating - we were going with Josiah's best friend & her family!  Things familiar and new - we couldn't wait.

The boys had their flu shots.  Carl had a few MD appointments.  By Columbus Day weekend, we all had colds.  New England living makes this a common occurrence - cold one day, hot the next.  This wasn't unusual, nor did it concern us.

On Sunday, October 11th, family gathered to celebrate the 4 October birthdays.  It was a beautiful day.  Carl spent a lot of time outside with the boys.  We enjoyed good food, exchanged gifts, had cake, and celebrated a day of making memories.  The boys were happy.  I was happy.  Carl was happy.

On Monday, Josiah turned 4.   Carl had an MD appt.  I took the boys to a dentist appointment.  After, we met up with Carl at the YMCA.  We had registered the big boys for their first-ever mud run!  We spent a beautiful afternoon together.  It was a gorgeous day.  The boys had a blast and each won a medal.  Carl got a call, from his doctor, in the afternoon.  Carl had pneumonia.

Carl had gone through bouts of pneumonia countless times in his life.  This was not new to him.  It was not concerning.  A prescription was called in and we headed home.  The boys had school on Tuesday.

Tuesday & Wednesday were normal school days.  They were routine, at home, for Carl & I.  Thursday morning, we put the kids on their buses, for school.  Carl waved goodbye as the buses drove away - just as he does every morning.

Carl didn't seem to be getting better.  If anything, he seemed worse.  After some pleading, and a call to the MD, Carl agreed to let me drive him to the e.r.  We were sure he simply needed a more powerful antibiotic.  We weren't concerned.  Josiah and I brought Carl to the e.r. and said we'd see him later.

Carl was admitted to the hospital, for pneumonia.  He was being pumped full of antibiotics.  Friday, the boys and I went about our normal routine.  We talked to Daddy on the phone, Friday night.

By Saturday morning, I was concerned about Josiah's cough.  So, I bypassed the pediatrician and headed straight to the Children's Hospital.  I missed Carl & wished he were with us.  I thought about the last 10 years of Carl's health issues - chronic ulcers, several near death experiences, and several major surgeries.  He came through all of it.  He was a fighter.  This was just pneumonia.  This was nothing, comparatively speaking.

At 11am, we were still in the e.r.  Josiah had been seen but we were waiting for scripts, etc.  Josiah had bronchitis and an ear infection.  I realized that I had missed a call from the local hospital.  The message - Carl was in critical condition.  I called & spoke with the ICU MD.  Carl had strep pneumonia which had seeped into his blood stream; he was in septic shock.  I looked at the 3 boys through the window of that little room.  I couldn't believe what I was hearing.

We were able to leave a short time later.  Carl's brother was cutting a trip short; he was headed home to be with Carl. 

Carl's condition continued to spiral.  Strep pneumonia.  Septic shock.  Kidney failure.  Catastrophic medical phenomena continued.  I made two trips to the hospital to see him.  I kissed him, held his hand, thanked him for being my husband, thanked him for being an awesome father to our children.  I begged him to fight & told him how much we loved him.  His brother spent hours at his bedside.

On Monday, October 19th, at 8:13am - Carl took his last breath.

How had we gotten here?  How could I be saying goodbye to my Love?  How could this be happening?  One week before, we cheered our boys on during their mud run.  Now I prepared for the bus to arrive home.  Now I had to tell the boys that Daddy was gone.

A week before, it was picture perfect.  It was perfect until it was no longer.....

Fall

When you grow up & continue to live in New England, September 1st means "Fall."  Summer is over.  Already, cooler air creeps in. 

On September 1st, Jesse started the 3rd grade.  James & Josiah had one more week before starting Kindergarten and preschool, respectively.  We were ready for another great year.  That week, we attended preschool orientation, and Kindergarten screening/orientation.  We enjoyed a trip to the playground, and had a last hoorah play date.  The boys had sleepovers and we spent Labor Day at a local water park - we had the time of our lives.  Then the younger boys started their new school year.  With all three back in school, we returned to our normal routine.

The middle of September brought on the school's fun run!  It was a riot!!!!  The boys loved the PTO-sponsored fundraiser.  Carl & I cheered them on, from the sidelines.

Josiah got glasses and hearing aides.  We were doing all we could to give him the very best advantage.  All was perfect!!!  The boys got haircuts & looked wonderful for school picture day, at the end of September.

Carl and I were planning for fun things ahead.  We started talking about Fall trips to the local theme park.  We looked forward to our annual trip the pumpkin patch.  We talked about birthdays, Thanksgiving, Christmas, and how much fun we'd have in Disney, early next year.

Josiah's IEP meeting was fantastic.  The parent-teacher orientation, at school, was awesome!  We liked all the teachers.  We liked philosophies, we were thrilled about everything!!!

It was a picture perfect start to the school year.  It was picture perfect, until it was no longer.....

The noun "Fall" represents a season.  When used as a verb, it can bring on a whole new meaning.  It can be scary.  It can change everything.....

Summer of a Lifetime

When school ended, we wasted no time in our memory making.  Josiah was slated to attend summer school 3 days per week.  I was scheduled to teach drama for 2 weeks.  The big boys were signed up for 2 weeks of summer camp at the YMCA.  All would come to pass and a whole lot more.

In the 48 hours following the end of school, Josiah had 5 therapy sessions (2 physical therapy, 2 speech therapy, and 1 occupational therapy).  We visited a playground, a playground/splash pad, and attended a baseball game.  Oh yes, we hit the ground running!!!!  It was summer, at last!

July rolled in quickly.  Josiah continued his therapies 2 days per week.  We had play dates and movie nights.  We celebrated the 4th of July by meeting Josiah's new best friend (the little girl with Down syndrome, who attends school with him) and her family.  We spent a glorious day at a local theme park.  In the evening, we went to a friend's house.  We enjoyed great food, friendship, and fireworks over a private pond.  The boys all played with friends.  The adults enjoyed the fun that friendship affords.

We went to a zoo.  The boys had Saturday swim lessons.  Josiah started his summer preschool program.  Mama started teaching her 2-week drama camp.  The big boys started their 2-week YMCA summer camp.  It was busy but everyone was happy, and at peace with life.

We threw in drop-in playgroups & farmer's markets.  The oldest resumed karate (though it was short-lived).  Carl started iron infusions and found more energy.  We attended a benefit dinner for the 5 year old's preschool teacher, who had since been diagnosed with Cancer.  Carl & I celebrated our 9-year anniversary.  We enjoyed a few date nights.  Josiah had an audiology appointment & his hearing came into question (again).  It was believed hearing aides may be beneficial so we started considering the option.

August was quickly upon us.  I was still teaching.  The big boys were still attending summer camp.  Josiah was attending summer preschool 3 mornings per week & therapy 2 afternoons per week.  Yet we continued pushing our goal - making memories with our boys.

We went to a water park with a great local group - all families have a child with Down syndrome.  We attended family night at the YMCA.  The boys attended summer Birthday parties & back to school parties.  They loved summer camp so much that they were signed up for an extra 2 weeks.  It was proving to be the summer of a lifetime!!!

We revisited the local theme park, playgrounds, splash pads, and filled in many days with love and laughter.  As the last week of August approached, our busy schedule started to slow.  My 2-week drama camp ended.  Josiah completed his summer program.  4 weeks of summer camp came to an end.

Josiah had a sedated CT scan to rule out possible physical causes of his hearing issues.  There were none.  The CT scan did note an unusual density to his cerebellum - something that will be further examined with an MRI.  Meanwhile, we actively pursued the hearing aide option.

The former preschool teacher lost her battle with Cancer.  We said goodbye to her, crammed in a field trip, celebrated my Dad's Birthday, and quickly welcomed September.  A new school year was about to begin.  Josiah was moved to a toddler bed (from his crib) and has slept like a big boy every night, since! 

September 1st: The first day of school!  Summer was over.  We were disappointed but looked forward to what a new school year would bring.....

Time

Time is a funny thing.  It keeps you going.  It provides joy and laughter, pain and tears.  Sometimes you have too much.  At other times, not enough.  I suppose the same is true with life.

Once upon a time, I wrote for the therapeutic value.  I wrote for the enjoyment.  I wrote because I had something to say.  I wrote when I was at a loss for words.  Then the writing slowed but not because any of the motivators had vanished.  Rather, it seems TIME to write had vanished.

As I'm realizing that nearly a year has passed since my last post, my mind is reeling with the knowledge of all that has transpired since.  As I try to compartmentalize the events of 2015, I shall endeavor to share my year's journey with you.

Josiah completed his first year of preschool, in June.  His 5 year old brother completed his last year of preschool in May.  The oldest brother completed the 2nd grade, at the end of June.  The second half of the year brought cold weather & snow.  It slowly welcomed Spring.  Recess resumed for children.  We felt less trapped. 

The slightly warmer weather made us long for Summer.  By April, we looked forward to summer vacation and the increased opportunity to "make memories" with the boys.  We began planning a trip to Disney (to commence in 2016).  We couldn't wait for less school, more fun.

It was during these months that we became friendly with another local family.  They have a daughter who also has Down syndrome.  She is 6 months younger than Josiah.  She began school in May.  She and Josiah were placed in the same classroom.  We were thrilled.  Josiah liked her; she liked him.  Everything was simply right.

Josiah bloomed during his first year.  He had made huge strides with fine & gross motor skills.  He was signing more & attempting to speak more.  The older boys had enjoyed a great year.  School was coming to an end.  We couldn't wait for summer.  Time moved slowly but summer was finally upon us.

"Making memories" is what we do best.  Now was the time for fun.

Fall into Winter

As the summer days passed by, we spent our time making memories.  Our oldest attended summer camp, the middle boy attended preschool, and Josiah had his usual fill of early intervention and outside therapies.  With each passing day, we could feel Fall approaching.  Each day, we were one day closer to the change that each Fall brings.  By the third week of August, we frantically tried to slow time down.  We added family activities to the schedule...knowing we would soon be limited by school-year scheduling.  By the last week of August, it had all come to pass.  Summer had ended.  The oldest began 2nd grade.  The 4 year old embraced a new school year, at his preschool.  Labor Day was right around the corner.

As September began, we counted the weeks until Josiah turned three.  The big boys were in school, full time.  Around the corner, big changes were in the air. Josiah was about to start preschool, in the local public school.  Our first IEP was in our immediate future.  Early Intervention was going to come to a grinding halt.  Our way of life, for 3 years, was about to change.  Though exciting, we were feeling the nervous energy that often accompanies anticipation.

By mid-Sept, we had received notice of the scheduled IEP meeting.  I didn't know if I should be excited or dread it's very existence.  I had heard nightmares about IEP meetings, attitudes, different perspectives where no one is willing to work together, etc.  The morning of the IEP meeting finally arrived.  Carl & I arrived to the school with Josiah's EI worker & an advocate from the local DDS office.  We were, truthfully, prepared to be unimpressed.  

I was never so pleased to be proven wrong!!!!  The IEP meeting was amazing!  They had considered everything & then some!  Josiah's needs had already been considered.  Special accommodations had already been thoughtfully planned out.  They were offering him 7 therapies per week, in addition to his classroom work.  They offered him an extended school year so that he can attend in the summer.  They had already included sign language as a method of communication (as Josiah has few spoken words). 

I asked only for two things: 1.  Potty training - it was included before I could finish speaking.  2.  A communication log - which was implemented on day one & has been a constant!  We walked away impressed.  We walked away knowing that we were blessed!  This was the right place for Josiah.  We didn't need to fear the unknown any longer.

As we prepared for Josiah's first day of school, we said our goodbye's to Early Intervention.  We said goodbye to the Early Intervention Child Coordinator who had been with us from the very beginning.  It was a strange sensation....to be actively involved with a team of people, then they simply stop coming.  Strange, strange, indeed.

Before we had time to mourn the loss of our friends, we quickly met new friends as Josiah's Physical therapy was moved to an outside agency (where he was already receiving OT and Speech).  Josiah transitioned nicely to all the changes.  Before we knew what was happening, it was the first day of preschool.  He was up, fed, dressed, and outside waiting for his bus.  We could hardly believe our eyes.

 

And so it began, mid-October.  Josiah attended his first day of preschool.  There were a few tears, the first two days of school, then he was off and running.  He attends school 4 days per week, 2.5 hours per day.  During those four days, he received OT 2x/week, PT 2x/week, and Speech 3x/week.  Two afternoons per week, he attends therapy at an outside agency....OT, PT, and Speech, each day.  That's 13 therapies per week!!!  Unbelievable!!!

So, four days per week, this Mama finds herself with 2.5 hours to get errands done, clean the house, do laundry, change beds, etc....without interruption.  By lunch time, each day, Josiah happily arrives home.

This has been our life for the past 10 weeks.  Meanwhile, we've celebrated family birthdays, enjoyed Thanksgiving, survived a stomach bug, and now excitedly prepare for Christmas.

This Mama finds herself tired....blessed, but tired.

 

Enjoy every single moment, as they cannot be repeated

Therapy Overload

Being proactive, we called Early Intervention before Josiah was born.  We called again about one week after his birth.  He was six weeks old when the assessment took place.  Starting at six weeks, he was seen weekly by the case manager, physical therapist, and occupational therapist.  Three appointments per week, for the first year-and-a-half.  Then speech was added.  Four therapy appointments per week, at home.

Shortly before his second birthday, the occupational therapist moved and we had an issue with the speech therapist.  Knowing he had one year left with EI, and then would age out, we switched occupational therapy & speech therapy to an outside agency where he would receive both services twice weekly.  Two appointments at home, four appointments outside the home.  Of course, playgroup was additional.  These didn't account for 'extras' - trips to Children's, the DS clinic, pediatrician, or dentist.

Given the last three months (with C being ill), this Mama is finding herself on therapy overload.  C used to take Josiah to his outside appointments (two days per week - two therapies back-to-back).  I would attend to grocery shopping and the like.  All of that has changed as C can no longer lift Josiah.

Thankfully, C drives the two 'big' boys to/from preschool/camp each day, while I stay at home preparing Josiah for his day.

Some mornings roll around and I think to myself, "I just can't do this today."  Yes, I have cancelled therapy due to my own inability to carry on.  It doesn't happen often, but happens more than I like to admit.  I week, I simply decided to take the week off.

Josiah is such a little trouper as I carry him from appointment to appointment.  He arrives with a smile, every time.  He works hard at everything he does.  I sit, exhausted, watching him.

He ages out of EI in 3 months.  That will end the home visits.  Physical therapy will get added to our list of outside appointments - six therapy sessions per week.  He will receive some services at school.  We will continue to take him to playgroups, when scheduling allows.

Sometimes, I am tired just thinking about our schedule.  I feel like we're on therapy overload.  I wonder if other parents feel that way too..... 

Change is in the Air

Kids grow so fast.  Josiah will be three in October.  That means he ages out of Early Intervention (EI).  His services (physical therapy) will be switched to the rehabilitation center where he received OT (occupational therapy) and Speech.  EI will also prepare Josiah for transition to the public preschool in town. 

We were determined to send Josiah to the same preschool that his brothers attended.  EI (early intervention) assumed the path of the public preschool.  After all, Josiah has Down syndrome and is granted an automatic spot in their program.  We didn't know a lot about the program but we initially railed against it.  It wasn't personal.  I guess we didn't like the idea of something being presumed for our son.  We didn't like the idea that he would be 'singled out' because he has an extra chromosome.  His big brothers didn't go there; why should he?

Acting on intelligence, and not simply emotion, C & I decided to take a tour of the public preschool classroom.  We were so glad we did that!!!  We brought an entourage with us that day.  C & I had Josiah as well as my best friend (who is a preschool teacher at another location).  The EI worker met us there, as well.  The assistant principle was taken aback by the amount of people with us.  The fact that we brought Josiah (something they encouraged me not to do) also may have thrown her.  However, if he was to attend there - we needed to see how he would react to the environment.

We were accompanied to the preschool classroom and asked to sit against the wall to 'observe.'  After about ten minutes, Josiah couldn't contain himself any longer.  He wanted down.  He wanted to play.  The lead teacher graciously allowed him to join a small group of children who were playing with blocks.  He sat in the group, like a pro.  He stacked blocks, was mindful of other children, and even used a few signs to communicate his wants and needs.  He fit in just fine.

We watched small groups of children move from 'station' to 'station,' always with a teacher.  The classroom was organized; Teachers were amazing.  We sat stunned.  Suddenly, our feelings about preschool changed.  There are only 10-12 children per classroom in this public, integrated, preschool.  We couldn't tell the 'peer children' from their counterparts.  

We walked out of the school with the realization that what we 'plan' isn't always the best plan.  This preschool program quickly proved to be the best option for Josiah.  When you are able, and willing, to be open to possibility - God shows you the best path to take.  He certainly had His hand in this one!

The teachers have since been to the house, to observe Josiah in his natural environment.  We learned that the teacher has two deaf children, of her own.  She is fluent in sign language and knew every sign Josiah used to communicate with her, even his approximations.  We were thrilled!!  Josiah took a liking to his new friends.

When the school year resumes in September, the IEP meeting will be scheduled.  Josiah will attend preschool Monday-Thursday, two-and-a-half hours per day.  A bus will pick him up at home, and return him after school.  He will receive some services at school, in addition to those he receives at rehab.  

I am nervous about sending him 'out' in the big world but have faith that he will grow and learn.  I know it will be good for him.

C & I will suddenly find ourselves with 3 hours per day where we are kid-free.  That will be a new experience for us.

In the meanwhile, we will spend our summer experiencing life with our children.  We will excitedly prepare for what's to come.  We will continue to be grateful for the many blessings in our life.

Though I Walk Thru the Valley....

The realization that I have not written in four months hit home tonight.  I apologize to my readers for taking such a long hiatus.  My friend Kel refers to this blog as her "Sunday Paper."  Although I provided her with a phone update, I'm surprised she hasn't fired me yet :)

My last blog entry was dated March 2nd.  My husband C was weeks away from a planned surgery.  Before I explain recent events, let me start at the beginning.

Almost ten years ago (before we were married), C had symptoms that would alarm anyone.  After suffering with the symptoms for almost 7 hours, I woke up and received a message (from him) that something was clearly wrong.  I drove to his location and convinced him that medical attention was necessary.  A couple of hours later, we were sitting in a local emergency room.  Once we entered the e.r., C began undergoing tests and examinations.  Soon after, the same alarming symptoms reappeared; They were clear indications of internal bleeding.  I contacted his family, and I waited for their arrival.  C was transferred upstairs (to ICU) for further testing.  His family and I waited patiently.  When a code blue was called, we couldn't imagine that it was him.  Our worst fears quickly became a reality.  C had coded during the test.  He was dying.  Emergency surgery was his only hope.  This was at approximately 2pm.  Family signed consents.  We waited.  Around 11pm, we received word that the surgery was over & C was in recovery.  We were allowed to see him at 12:30am.  The visit was brief.  

Over the course of the next week, I held vigil by his bedside.  It was a long and arduous recovery that lasted about four months.  Feelings I had had for C prior to this emergency had only grown.  I had faced the possibility of losing him but was given another chance.  It was (probably) then that I knew we belonged together.

Life continued as it does.  We moved in together, got married, and started our family.  As time ticked on, we moved past the fear of the early medical scares.  

Two-and-a-half years ago, we were awaiting the arrival of Josiah.  I was eight months pregnant.  My brother S died suddenly.  Two weeks later, C woke up with the same symptoms that alarmed me years earlier.  This time, we wasted no time.  911 was called.  C was taken out of the house in an ambulance.  The big boys (ages 4 and 2) were in the house.  I sat on the steps (very pregnant) and watched them drive C away.  My Mom came to watch the boys and I raced to the hospital.  C was released two days later.  24 hours after his release, the same symptoms reappeared.  Again, 911 was called.  C was rushed out by ambulance.  My Mom raced to the house.  I wasn't sure how much more I could bear, but proceeded to the hospital.  Ultimately, C was transferred to the hospital in the city (via the med flight team); I followed behind in the car.  It was about 1pm.  At 10pm, the surgeon decided that another surgery was needed.  It was an intense surgery, but C made it home in about a week.  Josiah was born one week later.

Though C hasn't been well and continued to struggle with the underlying cause (ulcers), time began to diminish the fear.  In January, we discovered that the ulcers were aggressive and posed another life-threatening medical crisis.  After much consideration, the doctors suggested a planned surgery in an effort to avoid another emergency.

On March 29th, C went in for a planned surgery (to remove his stomach).  Surgery went well (only lasting about 4 hours).  C was looking good.  On day four of recovery, C developed pneumonia.  He was transferred to the ICU and placed on life support.  Time continued as it always does.  My friend C helped me in every way humanly possible.  She drove kids to school, helped with Josiah, picked kids up for school, took the kids to give me a break, drove me to see C, let me cry on her shoulder, was a sounding board, and (some days) was my rock, my inspiration and my strength.

As time ticked on, I feared the outcome.  By day five (on life support), I wondered what the immediate future held for our family.  I wondered if tragedy was about to commence.  I cannot truly explain, in words, the thoughts, feelings, and emotions that I encountered during those trying days.  C ultimately was removed from life support.  He was sent to a rehabilitation facility (due to the inability to walk).  When all was said and done, C was gone for one month.  He returned home on April 30th.

His return home has been a joyous one.  However, this 'recovery' is proving not to be so much a 'recovery' as it is a 'change in lifestyle' (eating, etc).  C cannot lift anything over five pounds, for at least one year.  He cannot eat more than an ounce or two at a time, but must eat often.  He's in pain often.  It is not always easy.

It has truly taken this long for me to start to feel comfortable again.

I am grateful to have my husband home.  I also fear what lies ahead.  Though an optimist at heart, I pray we have no more medical crisis adventures waiting for us.

 

Who's This New Kid???

Since our return from Disney, Josiah has been an amazing little boy!!!

First up...no more baby food...

We had struggled to transition Josiah from baby food to 'people' food.  It's not all his fault, it's partially ours.  Face it, baby food is easier (at a certain level). Baby food is more costly, but less time consuming.  Josiah had been sick for the two weeks leading up to Disney.  He favored baby food while he was sick. Admittedly so, we preferred it too.  Then we went to Disney, and his sickness was still questionable.  He seemed to have developed a secondary lactose intolerance (I must admit, I'm not sure what that means, how long it lasts, or when to know it has ended).  As a result, we stopped feeding him yogurt (the one food he ate consistently).  While in Disney, he ate (almost exclusively) baby food.  It was safe & kept him well.

We arrived home and, honestly, just decided to stop feeding him baby food.  Well, low and behold - it worked.  Suddenly, Josiah was eating people food (and was happy about it).  In the three weeks we've been home, Josiah has eaten pot roast, beef stew, chicken, onion rings, hamburger helper, mac & cheese, and the list goes on.  He hasn't touched baby food in weeks!  We are ecstatic!!!  Just last night, I noticed the secondary gain....Josiah's orange tint has finally disappeared!!!  I thought it would never be so!!! 

Here's Josiah, after eating a piece of birthday cake last week.  Look at the smile on that face!!!

 

Second up...mister curious...

The day we arrived home, I thought Josiah seemed more curious....as if he was willing to explore more.  Well, I don't know what that trip to Disney did - but it is amazing.  Josiah is an exploration monster.  Luckily, he doesn't risk safety.  He explores things in a whole different way now.  He challenges himself to do things.  He explores things in a whole new way.

This has led to climbing up and down off the couch and beanbags.  He thinks sliding down a slide (face first) is hysterical!!!  He is such a curious and fun little boy.  He makes my heart melt (and sometimes causes my hair to turn gray) lol.  Here are a few of his recent explorations...

Third...suddenly signing...

We have used sign language, with Josiah, from birth.  Knowing language may be difficult for him, we hoped sign language might help.  He has always seemed to understand sign, but not usually willing to utilize it.  Since our return, he has been signing "be nice," "more," "all done," "eat," "sleep," and "phone."  He's blowing them away at speech therapy, too!  Mister stubborn is suddenly makes sounds (and signing) on demand.  It is absolutely amazing!!!!  I'm in awe of this little boy :)

Fourth...about to walk...

Josiah has been walking with his toy walker, for months.  Occasionally, he takes a few independent steps.  Well, last night was mind blowing!!!  He stood up in the middle of the room & took 4-5 small steps.  Then he stopped (while maintaining a perfect stand), regained his balance, and continued.  He took another 4-5 little steps, stopped, regained his balance, and repeated one last time.  He took 4-5 little steps and lunged onto his Elmo bed with a resounding laugh!  He knew what he had done!  In excitement, I texted his physical therapist D.  I told her what he had done.  She texted back.  "Don't tell him I know.  He'll stop doing it if you mention me."  I truly laughed out loud.  I'm not sure she's wrong, by the way....

Lastly...scores...

I stopped looking at scores from Early Intervention, and the like.  I don't like them.  They do not accurately reflect my child's capabilities!!  With that being said, at play group parents are asked to fill out a questionnaire (of sorts).  It assesses a child's overall development (and where they fall in the spectrum).  Josiah's scores have always gravitated towards zero.  No matter the age, his low muscle tone inevitably biases the score.  It's ok and doesn't bother me.  Last week, we arrived at play group & received the results of the last assessment.  In all categories, he fell ON THE CHART!!!  He "needs improvement" in all but social - but he actually fell on the chart!!!  He didn't score zero's, like he had previously.  Our little man, is catching up!!!  So much so, that I keep asking "Who's this new kid?"  :)

"Don't underestimate me.  I would never do that to you."