♫ Could I have this Dance for the Rest of my Life...

The words to this song by Anne Murray have the ability to transport me back in time twenty-five years to the days and weeks after we brought Scotty home from the hospital.  Music has a way of pulling us into the past and flooding us with memories of a different time and a different place.

When we brought this beautiful baby boy home from the hospital he did very few things that I had imagined and very few things described in the books I had read.  He didn't eat...he didn't sleep and he cried...oh how he cried...endlessly...all day and all night this child cried.

Steve could calm him by laying him on his chest, rubbing his back, and transmitting his calm vibes into this tense and fretful baby, but when it was my turn I didn't have the same luck.  I am certain that Scotty most likely could sense my anxiety, my unease and my feeling of utter failure at my inability to comfort my own child.

So instead, with the radio playing softly in the background, I walked him and I rocked him hour after hour and night after night trying to quiet my screaming and inconsolable baby.

One night as I paced back and forth across the nursery this song started playing in the background and accompanied the din of infant cries that had become the soundtrack of our nights. I started to sing along with Anne and our impromptu duet unbelievably enough quieted this wailing baby.  When the song finished I continued to sing and dance over and over again...

I'll always remember the song they were playing

 The first time we danced and I knew
As we swayed to the music and held to each other
I fell in love with you

Could I have this dance for the rest of my life...

So night after night we danced around the nursery and I would look at his sweet face as his eyes finally closed and my heart would squeeze with love for my son.  Even though he was only a few weeks old I was already feeling melancholy as I anticipated a time in the future when this  little man of mine would forget the feeling of comfort and safety and love he felt in my arms as we swayed to the music

 
I used to think our time for dancing would last a few short years...years when I was his whole world.  I knew that all too soon he would outgrow me and move on to things far beyond the  reach of my empty, waiting arms.

But like most of the things that I thought I knew 

I couldn't have been more wrong.

For the last two weeks Steve's job has taken him away from home and Scotty and I have been managing the best we can without him.  I wake up each day and try to plan activities that I can handle by myself...activites that keep us both from going stir crazy.  Most mornings include swimming and it helps to pass the time and effectively exhausts my indefatigable son.

The love of water is something common to those with  Angelman Syndrome, so we spend our mornings floating on rafts and diving for squid and fish at the bottom of the pool or playing some silly game we make up. Sometimes, on a really good day I might even get a few pages read in a really great book that has no literary value whatsoever.

Today as we were having horse races on noodles this familiar song started playing and it immediately snapped me back in time.  It brought me back twenty-five years to a night that was filled with sounds of my screaming baby boy...

I'll always remember that magic moment
When I held you close to me
As we moved together, I knew forever
You're all I'll ever need.

Could I have this dance for the rest of my life...

With tears in my eyes I said, "Hey Buddy do you remember when you were a baby and we danced to this song?"  Immediately this sweet boy of mine ditched the noodle and the squid he was holding and put his arms around my neck and his head on my shoulder and...

We Danced

I used to think our time for dancing 

would last a few short years.

Who knew?

  You changed my sorrow into dancing.

       You took away my clothes of sadness,

       and clothed me in happiness. 

Psalm 30:11

 

Some video of Scotty's mad swimming skills and since 50%

 ( I really hope it isn't 90%)

of my readers most likely have no idea who my

 duet partner Anne Murray is 

you can hear her singing in the background♥

In keeping with the theme this week I am highlighting 

my blog post titled Happy Birthday Scotty.

If you would like to read it

 CLICK HERE.

Below is a link to a beautifully written song by Julie Durden called More Like You. 

 Julie wrote this song for her niece Chandler who has Angelman Syndrome like our Scotty.

 It is BEAUTIFUL and brings me to tears every time
I listen to it. 

Scotty, Stevi and Sarah are all in it along with

 many other beautiful faces of Angelman Syndrome.

 Please feel free to share it. 

 CLICK HERE FOR MORE LIKE YOU

For Stevi- Happy 24th Birthday baby girl.
♥I love you to the moon and back♥

Return to Neverland

     How can an ordinary afternoon turn into something magical?  It's easy when you live with the boy who will never grow up. Saturday we had the profound pleasure to travel to the second star on the right and straight on 'til morning and into Never Never Land with our Peter Pan.  Usually our adventures to this magical place are limited to the parameters of our imaginations as we try to imagine this place where Scotty lives...a  place we will never really be able to see.

     So for two and a half hours we joined our boy in his happy place as he watched a much loved movie come to life...a movie he has watched hundreds of times.

      His face lit up as Peter Pan flew onto the stage showering everyone with pixie dust.  Indians and pirates filled the music hall and Scotty sat on the edge of his seat anxiously anticipating the arrival of each new character. He knew all the parts and he acted out what he could right along with the characters. 

    I watched  his beautiful face...a face that looks very little like that of a twenty-five year old man and much more like that of a young boy and was in awe as I witnessed just how easy it is for him to still believe in magic.  This man/boy clapped his hands furiously, fully believing that his claps had the power to bring Tinkerbell back to life.

    I was once again struck by the reality that this boy of ours will NEVER grow up. As Peter Pan says, never is an awfully long time, but like Peter this beautiful boy of ours will always need a mother.  He will always need someone to read him stories and tuck him in at night and of course he will need someone to make him pockets.

     So on a Saturday afternoon we rode along with Scotty on a grand adventure as we clapped our hands and for a little while we believed in fairies too.  Our adventure took us to the place where Scotty lives...the place where Scotty can fly.

“For to have faith, is to have wings"

 J.M. Barrie

     My friend Margie has a saying, "It's so cool to be me!"  She proclaims it anytime a tiny slice of wonderful appears in her world and it could be something as simple as holding a friends baby, having her children under her roof or simply watching a movie with her husband...it is all the same.  She finds small moments every day to celebrate.

     That is exactly what Scotty brings to us...a million small moments each day to celebrate. So on an ordinary Saturday afternoon as we visited Never Never Land with our very own Peter Pan, it was pretty cool to be us!

     Even now as I finish this up, Scotty is sitting next to me playing a game on his IPAD with his little hand resting on my leg and patiently awaiting any opportunity for me to stop typing so he can hold my hand.  As I sit here a bit teary-eyed I realize once again just how very, very cool it is to me♥

                   
                                                        

P.S. I am highlighting an old blog each week because I so many new readers.  This week I chose Never Never Land.  If you would like to read it CLICK HERE.

P.S.S.  In an upcoming blog I want to discuss sleeping issues.  Please email me any questions you might have and any ideas for getting these angels to sleep.  Hopefully we can compile a blog full of useful tips for those searching for answers.  I would also like to add some pictures of our angels when they are sleeping. 
Please email me at sandboxmoments@gmail.com

Sandlot Days

I have spoken previously about our villagers.  They are the people in our life who surround us with love and support and without them Scotty's world would be so very, very small and without them Steve and I would live a very isolated and very lonely life.

Tonight, once again our villagers unselfishly jumped in and helped us to avert a major crisis.  A crisis that most definitely would have rivaled any pyrotechnic display that occurred last night on the 4th of July.  I can pretty much guarantee, it would have drawn a huge crowd and it would have been louder and more explosive than the fireworks that exploded over our lake last night.

Let me preface this by saying that Scotty has been asking about fireworks since Easter.  Every day...all day in his relentless, determined, inexhaustible way.  Most years we spend the 4th at the lake with our villagers.  Every year at the same time and at the same place.  He expects it. 

Last night at the last minute we found ourselves without a place to go.  Our usual spot far away from the crowds and the chaos was closed. Knowing what a devastating blow this would be to Scotty, our villagers quickly jumped into action.  Our friends Dave and Karen, who live near the lake asked one of their neighbors...a stranger...if we could watch fireworks on the grass near their lakeside home.  Certainly they were told and pointed them towards an area with a picnic table on the side of a cliff overlooking the lake.  Perfect.

So Karen packed us a cooler and Dave shuttled us down to the lake in his golf cart.  It was a spectacular night with a soft breeze, a full moon, good friends and not a mosquito in sight.  It was  perfect...almost.

In a perfect world, every year all of our villagers would be there sharing in Scotty's excitement.   There would be the laughter of dozens of children running around with sparklers and baseball games played under the lights of the exploding fireworks.  There would be the warm feeling of being surrounded by family that would envelop us all.

Those were our "Sandlot" days...and they were magical.

Unfortunately, as the years have gone by and our children and the children of our villagers have gotten older they have moved on to other places and other things hold importance for them now.  They are not children anymore, and sadly they have lost their childlike wonder of the sparkling display that lights the night sky.

They have long since left Never Never Land and left behind is the little boy who will always wish they were all there. Scotty will never be able to understand the passage of time or the growing up and moving on of the only friends he has ever had.  He will  forever occupy this place and time with the same excitement, the same innocence, and the same wonder that he did twenty years ago.

And it makes me sad for him and a little sad for me too.

As we watched the fireworks last night I found myself very teary-eyed and nostalgic...wishing once again for the "Sandlot" days of the past...and missing dearly all those sweet faces of long ago.

"We all lived in the neighborhood for a couple of more years-mostly through junior high school-and every summer was great. But none of them ever came close to that first one. When one guy would move away, we never replaced him on the team with anyone else. We just kept the game going like he was still there."

The Sandlot

Karen and Dave we really can't thank you enough...this could have been a very different picture♥

The previous blog I am highlighting this week is Welcome to our Village.  If you would like to read it CLICK HERE