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 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......

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..... 

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."

Back Into the Swing of Things

I'll chalk last weekend up to a complete loss.  C and I felt like we were in coma's for much of the weekend.  Monday approached like wild fire.  I was glad J1's teacher had sent work along for him to complete while on vacation.  Although he had completed everything, our vacation extension meant he had missed several extra days of work.  I knew he was going to have to catch up quickly.  J2 is in preschool, thus no homework.  He was, however, going to have to jump right back into full swing.  Josiah hadn't had therapy in three weeks (2 weeks in Florida, and sick the week prior to leaving).  Monday was going to be a test.

After getting J1 and J2 off to school on Monday, we headed to play group with Josiah.  It was like we had never left.  Over the weekend, we noticed that Josiah seemed more independent.  He seemed to be exploring more.  In Florida, the tile floors made exploration difficult.  We thought maybe he was just happy to be in environments conducive for small children.  Here, in play group, he was definitely acting more independent.  He was crawling up (and down) the stairs to the climbing structure.  He was suddenly taking more risks (but not dangerous ones).  Little man....

Monday afternoon brought out the EI worker (whom Josiah hadn't seen in weeks).  She was accompanied by her supervisor and Josiah's PT (an occasional co-treat is not uncommon).  Well, that didn't go so well.  For the next 60 minutes (or so), Josiah cried like nobody's business.  He didn't want to stand.  He didn't want to walk with the walker.  He simply cried.  He sobbed.  Yes, it was not his finest hour.

Tuesday morning, he returned to Speech & OT (after his three week hiatus).  What a difference a day makes.  He stunned the speech therapist.  He made more sounds than ever.  He signed more, all done, yes, and no.  The speech therapist was elated (he is usually quite stubborn with her).  OT was just as successful.  He used the same signs with her.  He even said "bye-bye."  OMG!  This kid is amazing!!!  Thursday's sessions were about the same. Josiah is vocalizing more sounds.  More exciting than that (for me), he is finally using some signs.  

After feeling like we were never going to be able to wean him off baby food, we have finally accomplished the impossible (or so it seemed).  We have gone the better part of the week without baby food.  Josiah has happily eaten pork chops, rice, pot roast, potatoes, mac & cheese, tuna fish, chicken alfredo, onion rings, bread, and beef stew.  His first week without baby food!!!!  Yay Josiah!!!!

I feel like Josiah has turned a huge corner this week.  He is vocalizing more.  He is FINALLY signing (even if just a few words).  He's imitating a LOT!!!  He's more engaged in active play.  And, he's eating big people food.  He never ceases to amaze me.

I love my life <3.

 

Disney Day Ten & Eleven

We slept until about 8:30 on Thursday.  I immediately started laundry.  It was time to think about packing.  The big boys spent the morning in the pool.  At noon, we left to visit a friend.  The 'quick' trip took longer than expected.  We were headed 'home' at 6:30.  We stopped for dinner, but the four year old got sick - so we headed back to the house.  I think it was sheer exhaustion (and maybe a little car-sickness).  Luckily, everyone was ok for the remainder of the night.

C and I didn't go to bed until about 11:30.  I didn't fall asleep until 1:30.  The 3:30 alarm, came far too quickly.  We managed to finish laundry, pack, and get out the door around 5am.  We were at the airport by 5:30; we arrived at the gate at 6:40.  It was only about 10 minutes before we were allowed to board the flight home.  By 7:20, the plane was taxi'ing down the runway.  Our trip to paradise was over.  We had all survived (C and I needed to get home - we were exhausted lol).  We were so proud of our three boys.  They were amazing little men.

My sister met us at the airport, as promised.  We arrived back at our home by noon.  We were pooped.  Later in the day, we ordered pizza and had friends over.  It had been a lovely trip but we were glad to be home.

Dorothy was right....'there's no place like home.'

Here are a few pics from the last leg of our journey....

Disney Day Nine

We woke Wednesday to a beautiful day.  It was our last day to visit the parks.  We were headed to where it all began....the Magic Kingdom.  Mom and Dad were joining us for the day.  It would be a wonderful day.

After arriving at the parking lot.  We procured a manual wheelchair to assist Dad in getting to the Ferry.  In the parking lot, we had noticed a large camper.  Outside of it, several adults were standing around a stretcher.  They were traveling with medical equipment.  We didn't make a lot of it; we simply noticed.

After a half an hour wait for the ferry, we could see the boat approaching the dock.  A woman gently hollered to gain the crowd's attention.  Her announcement indicated that a child from 'Make a Wish' was amongst us.  The request was simple: let him be the first to board the ferry.  The crowd was more than willing to accommodate this simple request.

The previously-noticed stretcher was wheeled onto the ferry first.  The young boy appeared to be between the ages of 7-10.  Numerous adults accompanied him, some wearing 'make a wish' buttons.  They traveled with tubes, oxygen, and the like.  People were teary watching this young man board the ferry to his dream come true.  We didn't know we would share space with a little king <3.

The Magic Kingdom was sensational.  We spent a better part of the day in one section of the park.  It rained, intermittently.  No one seemed fussed by it.  Before we knew it, it was nearing sunset.  It had been a beautiful, long, day indeed.  It was time to head 'home,' and so we did.

Thursday, we would focus on packing.

Friday, we were going home. 

Here are a few pics of our day.....

Disney Day Eight

Tuesday was another beautiful day.  We were excited about going to Epcot.  I couldn't wait to stand with my Dad, and watch the Illuminations fireworks/laser lights show at 9pm.

Unfortunately, Dad had overdone it the day before.  His foot was sore.  He made the difficult decision to stay home.  He hoped to join us for the Magic Kingdom, on Wednesday.

We were out the door by 11am....it would be a late night.  We were prepared, and excited! 

Epcot was as I remembered it.  We started out in the Epcot ball.... the adventure into space.  From there, we headed to the Dinosaur ride.  I wasn't concerned about the many reminders that "This will be a 37 minute ride, so if you feel like it may be too much for any member of your party, please exit now."  Piece of cake....so I thought.

About 7 minutes into the ride, Josiah had begun to fuss.  The bag of Nilla wafers would have helped.....but I had mistakingly left them in the bottom of the stroller, outside.  Pat-a-cake and hugs weren't working.  We were about 15 minutes into this dark ride; Josiah was now screaming.  He had crocodile tears!

C was frantically pawing through the diaper bag looking for any hidden treats.  Josiah took one sip of his water, then promptly threw it.  The Dorito was even less of a hit.  As I frantically tried to quiet Josiah, I looked around at Epcot's guests wondering how badly we'd be hated when the ride ended.....another 20 (or so) minutes away.

I'll tell you....when your child is screaming & disrupting other people (at a very expensive location), and you can neither exit nor stop them, tension starts to rise.

Due to a plastic spoon & a jar of baby food, I was able to feed Josiah (in the dark).  Though I missed most of the sights and sounds, I knew the glares would be minimal, at the end!  Lol.  I was never so grateful for a ride to end...

We went to lunch hoping to put Josiah in a 'good place'.  It was 3pm and Illuminations was 6 hours away.....it was the thing I looked forward to the most.  Josiah went into complete melt-down mode, during lunch.  I couldn't eat....too stressed out.  It was 4pm.  I announced, "It's time to go.  I can't deal with this!"

I was sad.  We made our way out of the "World Showcase."  We had eaten lunch in the USA so we were at the furthest point from the exit.  As we were crossing from the World Showcase into the 'front' part of the park, a kiosk caught the eye of our 7 year old.  Josiah was quiet (finally) so we agreed to stop.

The two older boys were given a play cell phone & asked to help save the world.  They were promoted to "secret agent" status and agreed to complete their assignment.  Josiah was still quiet and I remained cautiously optimistic about seeing the later show.  So.....we headed back into the World Showcase.

The boys had a great time traveling to the different countries, completing tasks (dictated by cell phone) along the way.  They had a blast!!!  We were so glad things had taken a turn for the better.

By 8pm, we staked out a good viewing location.  We hit the gift shop & returned the cell phone.  The big boys passed time playing with a third child.

At 9pm, Illuminations began.  It was everything I remembered & everything I hoped it would be.  Josiah was being an angel.  I was watching the show I had been anxious to see.  Yes, I was blessed.

By 9:30, we were heading for the car.  It had been a long day.  Everyone was tired but happy :)

Here are a few pics....

Disney Day Seven

Monday morning ushered in pure, and unadulterated, sunshine!  It was our originally-scheduled-travel-home-day.  I couldn't be happier that we were there to stay.  We were headed to the Animal Kingdom & Mom and Dad were joining us!

Upon arrival, we successfully procured Dad an electric scooter.  He was delighted!!!

We enjoyed great rides, fantastic atmosphere, and superb shows!  By 2pm, we were hungry.  Josiah was starving!  So, we headed for the gates.  The 4 year old had been asking for days; now it was happening.....Rainforest Cafe for lunch.  This would be the second, and final, time.

We enjoyed a leisurely lunch and browsed the gift shift.  Despite the early hour of 4pm, the thoughts of home (and the pool) proved too tempting.  We bid adieu to the Animal Kingdom, and headed home.

Tuesday, we were going to Epcot!

Here's a few pictures from our day....

Disney Day Six

We were up at 7:30am.  It was very foggy but free from rain!  We were headed to Hollywood Studios!  It would be just the five of us, again.  Mom & Dad were staying in.

We were out the door around 11am.  We headed to the New Balance outlet store - Mama needs new shoes!!!  Lol.  Fifteen minutes in the store, and Mama had new sneaks!  Off to Hollywood Studios!

The park was a lot of fun!  The big boys rode a Star Wars themed ride with Daddy.  The highlight for the four year old was his encounter with Woody & Buzz Lightyear.  I enjoyed seeing the Wicked Witch of the West appear & disappear in a ball of fire and smoke!!!  Fun times :)

We shopped, ate, walked, and rode.  We stayed right up until closing.  At home, the boys swam in the pool & we all relaxed!

I was so glad we weren't leaving yet...

Disney Day Five

We woke Saturday morning to raindrops falling on the pool cover.  Luckily, the forecast wasn't calling for a washout.  It would clear by noon.  Mom and Dad were planning on staying in, to nurse Dad's foot back to health.  We were headed to Universal Studios!

We arrived there around noon.  The lines were long, and slow.  It rained intermittently.  It took over an hour (and more money than I care to admit), but we were finally passing through the gates.

I had last visited Universal about 20 years ago.  Back then, there was one park.  Now there are two: Islands of Adventure & Universal Studios.  Not sure of the difference, we headed to Islands of Adventure. 

We visited the worlds of Harry Potter, Jurassic Park, Dr. Seuss, and various super heroes.  We ate at a comics cafe and dodged raindrops.  It was 5:30pm by the time we headed to the 'other side.'  Yes, that was the Universal I remembered.  With only an hour until closing, we rode ET (twice) & drank milkshakes, before seeing the 7pm fireworks show.  A real rainbow even appeared in the sky before being swallowed by darkness. 

By 7:15pm, we were headed to the car.  It had been a long, expensive, day.  We had fun!  We would hit Hollywood Studios (formerly known as MGM) on Sunday.  I was so glad we extended our vacation.

Here are a few pics of our day.