When an Angel Dies

There is not just one emotion you feel when you learn that you are about to be a Mom for the first time or even the second & third time.  There's a level of excitement paired with trepidation all wrapped up in a lovely package of love and fear.

Am I ready to become a Mom?  Am I going to be a good Mom?  Oh my gosh I am going to be a Mom!

  With every child there will be a new normal that enters in your life and somehow you adapt. Then the  newness wears off and it is just your normal.  But what happens when you become a mother to a child with exceptional needs and medical frailties?  What then?!  Well, you adapt and adjust to your new normal.

Is it easy?  Hell NO!  It is a journey like no other.  

Imagine a road of unthinkable twists and turns.  It is a road to the unknown.  There are times you feel  your feet are on solid ground and you actually feel confident that you can handle anything ahead.  However, most of the time you are on rocky ground and no matter where you step, nothing feels good and everything hurts.  Other times the ground is murky and you feel stuck and not sure how you will pull yourself out of the sludge.  There are moments that you don't have any footing at all and it is as if you are being sucked down by relentless quick sand and your fight although relentless is futile.  

But then there's a person who has traveled this road before you.  They are further along in their journey and they take great lengths to meet you where you are and give you their hand, wisdom, and hearts to pull you through, lift you up, and guide your every step.  For me, that was Karen Delafuenta.  She had a good 13 years ahead of me on this journey. 

My son Scotty has Angelman Syndrome and so does her Jonny.  She is my spirit sister, my guardian, and one of my best friends.  

No one talks about when the caring for your angel on earth ends.  The part of the journey when an Angel dies and earns his heavenly wings.   We all think about it every day.  The fear of the unknown when/if this time will happen.  

Jonny earned his wings this Mother's Day morn.  Momma and sister by his side.  This is where I step in to offer my hand, heart, and love while they navigate this uncharted territory. 

I don't always have the right words.  I clumsily share my deep sorrow and cry with them.  My heart actually aches. It physically hurts.  I don't like this part of the journey for any of us!  I hate it.  I can't see past my tears some days.  I want to scream at the heavens to stop having our Angels suffer.  In those moments of answered prayers, I curse God when he allows an Angel to die so they no longer suffer.  The pain is gone.  The suffering is no longer.

Jonny was loved and cared for by the best mother and sister any boy can ask for.  He was a beacon of love and joy. Every parent who is on this journey is grieving.

The world is forever changed when an Angel dies! 

Scotty, my purpose in life

 Scotty was almost 8 years old when he finally was accurately diagnosed with Angelman Syndrome (AS).  He was misdiagnosed with Cerebral Palsy on his first year well visit.  I am still in shock that we just celebrate his 17th year of life on April 8!

Life with AS is far from easy.  It is a life full of doctor’s visits, hospital stays, upper respiratory infections, chronic constipation, chronic reflux, incontinence, anxiety, feeding issues, sleeping disorder, sensitivity to the heat and sun, unsteady gait, developmental delays, lack of speech, walking and balance disorders, and worst of all seizures.  My son will require life-long care.

There is not a day that goes by that I am not overwhelmed with the thought of leaving my Scotty behind.  I fear for his care and overall well being after I take my last breath.  This is a cruel world filled with evil people who find pleasure in harming the innocent.  My son is the purest form of love and joy!!! These blessed characteristics are also a curse.  It leaves him vulnerable to the evil among us.  I do my best to protect him and keep him safe.  My purpose in life is to have him never doubt that he is loved!!!

This page was created originally to raise money and share a fundraising event for one of the agencies that funds research to find a cure for Angelman Syndrome.  Although there is talk of a cure, my hope is fading with each day I get older that it will happen in our life time.  I don’t know what a cure will look like?  What I do know is that I adore my son.  What is Angelman Syndrome?

His innocence is something I celebrate and yet fear.  His trusting nature is sweet and yet terrifying.  His unawareness of the evil in the world makes him pure and endearing but leaves him incredibly vulnerable.

In the quiet of the night tears just fall.  These tears are at times silent and slide down my aging face.  But when the fear overtakes my spirit those same tears are choreographed with guttural sobs that I dare not allow anyone to witness.  For I am the mother of an exceptional child and strength is what must be visible at all times. The moments you won’t see are in he still of the night when all walls are down.  As I embrace the calm silent night terror rises up in me and that is when the reality of our mortality punches me in my core.

Both realities that I ponder are incomprehensible to me.  If he goes before me, I cannot even fathom that.  Me without him?  My lifeforce will leave if he departs before me.  The thought of me taking my last breath knowing that I am leaving him to the unknown and no protection from the evil in this world is equally unfathomable.  The best I can do is allow the tears to fall until I fall asleep and wake up to face yet another day.  Give him my all.  Wrap him in my love and do my best.

This page will be updates on Scotty.  This page will be used to celebrate the small victories as well as sharing the struggles of a life with Angelman Syndrome.
Scotty Strong FB Page

This will be a glimpse of the SECRET LIFE OF AN ANGEL XOXO!