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???

Saturday, November 14, 2015

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.....


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.....

Friday, November 13, 2015


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.