P.S.

In the previous blog I told the story about our Scotty and how in the blink of an eye he changed from an ordinary boy into a Superhero. The story of our little hero didn't end there. 

I think we can all agree that what Scotty did that summer day was pretty amazing, but factor in his limitations and it was certainly nothing short of a miracle.  The recognition that was given to him was really a message to all of us...never ever discount someone because they have different abilities than what most people consider normal.  The gifts that children with special needs have to share with others are usually quite extraordinary.  Scotty was a shining example that day of the works of our God.

And so we get to the P.S. of this story that happened a few weeks later.

Scotty was scheduled to receive the Danger Ranger "Tiny But Tough" medal at North Park Mall in Dallas.  My husband was out of town so my friend Patty and her children and Sean's family came along as part of Scotty's entourage. 

During the ceremony I was so afraid that the crowd, the noise and the chaos would throw Scotty into a tailspin, but he handled it all like a champ.  Of course the promise of a hamburger and french fries certainly helped.  He graciously accepted his medal and off we went in search of a McDonalds.  He proudly held his medal up to anyone who happened to be looking in his direction.

Before I go any further with this story it is important to understand just how difficult it is for Scotty to communicate. Our life has been one long game of charades as he tries desperately to make us understand.   In his attempt to get our attention he is constantly tapping, grabbing, and pulling on us until we finally acknowledge him.

With that said it is not surprising that it is quite common for him to reach out to strangers in the only way he knows how...by touching them.

So as we waited in line a smiling Scotty reached up and grabbed the arm of a man who just happened to be standing within arms reach. In his other hand he was holding up his shiny, new medal to show this stranger.  Before I had a chance to offer an explanation....

...the little boy they had just called a Hero got his hand smacked.

It rendered me speechless.  I literally was unable to form words.  To say I was stunned would be an understatement.

The man's face showed the briefest moment of regret as he mumbled some sort of what I assumed was an apology and walked away.  An apology I am certain was issued only because he recognized  Scotty's disability.

Shame on him.

I was overcome with tears as I looked down at my son with his big, drooly smile...still holding up his medal...still waiting for this man to show the proper amount of admiration.  He never stopped smiling and he never stopped waiting.

This sweet little boy with the shiny new medal had never experienced such an unspeakable act of unkindness until this moment...

...And neither had I.

Unfortunately for both of us it wouldn't be the last.

While the tears poured down my face, this little boy who had just received a medal for heroism and a slap on the hand within minutes of each other was once again a shining example of the works of our God.

My son who is so innocent...so pure of heart...so forgiving... knows nothing of the evil in this world.  He holds no anger...no resentment...no animosity in his heart. 

Regrettably, I still need a lot of work.

 Be kind to one another, tender-hearted,

 forgiving each other just as 

God in Christ also has forgiven you.

 Ephesians 4:32

Channel 11 Broadcast

Ft. Worth Star Telegram

Scotty and Sean 1996

 
















Scotty and Sean 2012

Believe it or not I actually have a P.S.S. if there is such a thing.

As I started this blog last week I googled Scotty's name to see if I could pull up the newspaper articles or the Channel 11 news story. Instead I found his story included in a book called Real Miracles, Divine Interventions, and Feats of Incredible Survival by Brad and Sherry Steiger.  I contacted the authors and the following is the email response as well as a link to the book.  It actually takes you right to the story.  Very Cool!

Dear Joanne,

It was very nice to hear from you.  When we read a newspaper interview with you and reporter Ruth Watts and learned of Scott's heroism and noted that he had received the 1996 White Helmet award, we thought it was a remarkable and inspiring story and decided that he was most deserving of a brief entry in our book. You must be very proud of him.  It is great to see that you are starting a blog about your life with Scott.  It is certain to be very helpful to many families. Certainly you have permission to include our email response. Your blog is fantastic!  .

Many Blessings to Scott, to you, and your family,

Brad and Sherry

Here is a link to their book.
Real Miracles,Divine Interventions, and Feats of Incredible Survival

Hero of the Heart

Why?

As the parent of a child with special needs the question  WHY seems to come up a lot. On really difficult days, the word WHY pervades my prayers and my pleas to God  as I watch my son struggle to find a place in a world that constantly confuses and frustrates him.  Though I am exhausted after a day that has been filled with many challenges and the resulting bad behavior... the word WHY, always written in “shouty” capitals, blinks like a neon sign on the inside of my eyelids as I try futilely to sleep at night.

WHY SCOTTY?

I try to focus on these words.

 It was so that the works of 

God might be made visible through him.  John 9:3

 

I have to believe there is a purpose…I have to believe God has a plan.  I have to...

 

In taking this journey with Scotty we are blessed to have witnessed hundreds of small miracles every single day... things that make us shake our heads in wonder and in awe.   With this boy, who has exceeded all expectations, everything he does is a small miracle.

 

However, there was one miracle that changed the course of the lives of two families forever.  It happened  fifteen years ago when Scotty was just nine years old.

We had our neighbors over for a swim and it was one of those perfect summer days. As the afternoon was winding down, my friend Danielle got her two boys out of the pool, took off their arm floaties and was getting ready to leave.

 

My three children stayed in the pool and continued to swim. Sarah, who was four at the time, had just learned to swim so I kept my eyes trained on her because I wasn’t yet comfortable with her new found swimming abilities. We had all, Scotty included, spent the last two months standing in the pool while Sarah swam between us.  She would swim to Scotty and he would pick her up, turn her around and send her back to me...over and over again.

While Danielle was packing up her bag her two boys were busy playing in our playhouse that was about fifty feet from our pool…

 

Or so we thought.

 

Little Sean,  just two years old had slipped silently into the pool…we were standing right there...we didn’t see it…we didn’t hear it.  My daughter’s scream brought our attention to Scotty who held Sean, who was coughing and spitting out water, firmly in his grasp.  

 

The next few minutes were a blur of activity…but the bottom line is little Sean was fine, shaken up and frightened, but thank God he was okay.  Finally he rested quietly on his mother's lap while she rubbed his back to get the rest of the water up that he had swallowed.  We sat in stunned silence ...contemplating just how differently this afternoon could have turned out.

 

My neighbor was so grateful and wanted to draw attention to the fact that drowning is silent and can happen to even the most careful and attentive parent. She called the newspaper with her story and a media firestorm ensued.  Scotty’s fifteen minutes of fame lasted for several weeks. 

 

The story made the evening news, the radio, two local newspapers, Steve's newsletter at work and was the front page story on the Angelman Syndrome newsletter.**  All very awesome and completely overwhelming, but to Scotty it was just a lot of people taking his picture, clapping for him and giving him really cool stuff.  He was awarded the “Tiny But Tuff” medal of courage by the Danger Ranger Child Safety Program. The Grapevine Fire Department presented him with The White Helmet Award for his act of heroism. 

He was only the fifth recipient in the award's history.

 

 

 

 

 

 

Scotty will never know the impact he made that day and how very differently it could have turned out.  It is possible to offer some explanation for his actions that day.  Perhaps he was just doing what I had taught him to do with his sister…perhaps.

 

And we find ourselves back to the question of WHY?  Does this answer the question…Why Scotty?  Could his whole life’s purpose have been wrapped up in this one moment in time...perhaps. 

 

Like the bible verse says, “…so the works of God might be made visible through him.”

 

We will never know for sure but here is what I do know...

 

We have had the extreme blessing to watch Sean grow into a wonderful young man who will soon be graduating from high school and starting the rest of his life.  He never, ever fails to say hello to Scotty and is quick with a hug or a kind word, just like the rest of his family.

 

It could all have been very different if not for this little boy they called a hero.

 

Truly though, no one person can be a hero alone and without a doubt God’s fingerprints are all over this event.  But for Scotty, the little boy of whom not much was expected, with God's help did something very extraordinary that day.  

In my book he is a ♥SUPERHERO♥

♫ You're everything, everything I wish I could be... ♫

 

 

There will be a P.S. to this story next week...there is always a P.S. to all great stories isn't there?

   

**Follow this link to a copy of the Angelman Syndrome Newsletter for the story. 

https://docs.google.com/open?id=0B8cbKLAaVZuTQ01IQmpGWV9sbzQ 

 

 

I added 2 new videos and some new photos under the Through Scotty's Eyes tab.  

I have been in contact with so many Angleman families and of  course they have many questions so I added a new tab titled Just the Facts.  It is a list of milestones and  what his capabilities are at this time. This is a work in progress.

Never Never Land

... a place that can be found only in the minds of children… a place where time is frozen…a place of eternal childhood.

“All children, except one, grow up.”

…Make that two.

Scotty lives in his own version of Never Never Land too, and we are lucky enough to still be able to see glimpses of this magical place through his eyes. Though his body is that of a man he will always stay a little boy.  Like Peter Pan he will never grow up.

This weekend as he anxiously awaited the arrival of a large white bunny who would fill our backyard with colored eggs I realized how lucky we are to share our days with our Peter Pan.  His excitement is contagious and he swoops us up and carries us with him on adventures that most twenty-five year olds have long ago left behind.

Scotty still travels to places that most of us have forgotten.   

They are places we have let slip from our memories.  As we grow older we lose our ability to see Never Never Land.  And we miss out on all the adventures that used to fill us with so much joy and so much happiness.

Why can't you fly now, mother?
           Because I am grown up, dearest.              

 When people grow up they forget the way.

The moment you doubt whether you can fly,

 you cease for ever to be able to do it.

 

  

With childlike enthusiasm Scotty wakes up every single morning fully expecting to be surprised…confident that something wonderful will happen. There is a determined certainty in his expectations.  He has no frame of reference for expecting disappointment.  Why should he? For him everyday is a new adventure full of possibilities…full of reasons to celebrate.

  
Scotty can find genuine happiness in the simplest of moments.  Moments the rest of us miss because we are so busy rushing through our day. Our Scotty misses no opportunity to grab a moment of laughter…a moment of pure fun. 

Everyday surprises can come in the form of  a picnic in the living room, escaping out the front door and running with wild abandon down the street with me in hot pursuit, having pizza for lunch,  a game of hide and seek, a cup of carrots with jelly beans hidden at the bottom, a tablecloth and candle on the table just to eat a PBJ, the music of the ice cream truck… the list could go on forever.  For him every moment is an adventure waiting to be embraced.

Each instance is an occasion to be celebrated.   The thing that I find most striking is that the level of intensity of his personal celebration for any particular surprise is exactly the same.  Whether it is a hamburger or trip to Disney World the reaction is the same…he literally jumps for joy!

Pure joy radiates from this boy and we can’t help but be enveloped in its glow and celebrate with him.

So all day long he anticipates a moment…an event that will transport him to his happy place…and we are blessed each day to be able to join him in Never Never Land.  Thanks Buddy♥

 “So come with me, where dreams are born,

and time is never planned.

Just think of happy things, and your heart

will fly on wings, forever, in Never Never Land!

All you need is trust and a little bit of pixie dust!”

 ― J.M. Barrie, Peter Pan

Check out the new tab titled Through Scotty's Eyes to see

 some original photos from our budding photographer♥

Carrying the Cross

And as they led him away, 
They seized one Simon of Cyrene, 
Who was coming in from the country, 
And laid on him the cross, 
To carry it behind Jesus.

 Luke 23:26

In my purse I carry a small scrap of paper that 

has the following words written on it:

 Carrying the cross was not what Simon of Cyrene 

had planned that day. 

 He was on his way to do something else.

I can’t remember where I read it, but it brings me great comfort. It reminds me that twenty-five years ago Steve and I were on our way to do something else…we had other plans too.

I feel a certain kinship with Simon.

I am fascinated by this obscure man who is mentioned by name in three of the four gospels as well as the subject of the fifth Station of the Cross. 

I picture him walking behind Jesus carrying his cross for a little while…easing the burden and lightening the load of the One who was suffering such incomprehensible agony…a stranger…and it leaves me breathless.

We all carry around our own cross at one time or another.  They are heavy and cumbersome…they slow our steps, but even as we bow under the tremendous weight we still continue moving forward. Our crosses are never ones we would choose for ourselves and most likely we would not wish our particular burdens on anyone else. If we are fortunate enough we will find someone to help us when we stagger under the heaviness.


The most important thing we could ever do is to carry a cross for someone as they stumble under the weight until they are able to pick it up once again  and continue their journey.


Angelman Syndrome is Scotty’s cross to bear, not ours. However, he will never be able to carry his cross alone …Ever.  

Over the years we have had so many well-meaning people express their concerns about the toll caring for Scotty will take on us. They suggest that perhaps it would be better for us if Scotty lived somewhere else. How would it be better? We have never felt like that is the path in which we were being lead.  Their intentions, though thoughtful, are not ours.  There comes a time when anyone raising a child with special needs must make that decision for themselves. Either decision comes at a huge emotional price.

Make no mistake, being a caregiver 24/7 is agonizingly hard, but having a syndrome that robs you of your speech and your independence and forces you to live in a world that is confusing at best and then be expected to conform to its rules and expectations…

… Is much, much harder. 

Scotty’s cross to bear will never change, he will always have Angelman Syndrome…Always. From now until forever he will always need someone to help him bear the weight of his cross.  And so for as long as we are able, Steve and I will stand side by side with this sweet boy and share his burden no matter how Herculean the task might seem.

Like Simon of Cyrene we were called upon by name.
Like Simon of Cyrene we were not given a choice.
Like Simon of Cyrene, we were on our way to do something else…

...Something much less important.  

But how could
we have done
anything else? 

Carry each other's burdens,
and in the way

you will fulfill the law of Christ.

Galatians 6:2 

Have a Blessed Easter