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 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 

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)

31 for 21 Challenge: Day Fifteen. Unending Losses

I woke up this morning to read about another loss in the DS community.  A beautiful little girl, with a beautiful extra chromosome, was born in Idaho in May.  She, like so many, was born with a heart defect.  For four months, she lived a happy, healthy life.  In September, she began going into heart failure.  They performed surgery but she was unable to recover.  She passed away on Saturday, on Josiah's second birthday.

I wonder why some live, and some die.

My heart aches for the families who have said eternal goodbyes.

Today, like always, I am forever thankful for the lives of my children.  I am thankful for great doctors, good friends, and the best family a person could ask for.  I am thankful for this life I have been blessed to call my own.

RIP sweet angels.  Know that you are never forgotten.