Showing posts with label Life with our Adult son with ANgelman Syndrome. Show all posts
Showing posts with label Life with our Adult son with ANgelman Syndrome. Show all posts

Wednesday, March 20, 2013

Random Moments and Everyday Miracles

Miracle:
A surprising and welcome event that is not explicable by natural or scientific laws and is considered to be divine. A highly improbable or extraordinary event, development, or accomplishment.
 


Wayne Dyer said, "Miracles come in moments. Be ready and willing."  For us miracles happen every single day.  I know this because at 26 our Scotty, who has defied so many odds, is still learning, still growing and still maturing.  He is by definition a miracle.

Random moments that to the ordinary person are just that...ordinary, but to us they are occurrences that are surprising, inexplicable, highly improbable and extraordinary.  I have compiled some random moments from the last few weeks...small flashes in time that are absolute proof that miracles happen.
 
 
There are two ways to live your life.
One is as though nothing is a miracle. 
The other is as though everything
is a miracle.
Albert Einstein
 
 
1.  Scotty's has taken to "reading" the paper while eating his cereal.  So cute!  And yes it is still very dark out...a much too early morning.  You know it is bad when you have had two cups of coffee by 6am.
 
 
2.  As we sat watching  morning mass together on EWTN he held up his bowl of cereal as an offering when the Priest held up the sacred host.  Together we watched the first televised  appearance of our new Pope, and at Scotty's urging we stood united with Catholics around the world, hands clasped and joined Pope Francis in praying the Our Father, Hail Mary and Glory Be.  Priceless...priceless...priceless.
 
3.  I truly believe our little Houdini has some heavenly assistance with breaking into all the locked doors.  He is still getting in...but when we check the doors they are still locked?  Grandma and Grandpas...not funny!
 
 
4. A few months ago Scotty was a holy terror and made it his mission on a daily basis to dump, destroy, and terrorize the villagers.
 
Exhausted from the ransacking!
 
 
 
 
 This was yesterday, but it was from playing...
 PLAYING with his toys and he cleaned up every single thing!
 
 
 5. Every single time he gets a boo boo or thinks he has a boo boo (which is daily for our little hypochondriac)  he hands us the phone to call the doctor.
 
6. During a little tantrum he picked up the remote control and instead of winging at my head he gently tossed it on the bed and walked away :)
 
7.  Last night at dinner he picked up his dishes and took them to the sink without us reminding him, but the astounding part was he came back and got mine!!!!!!  That has NEVER happened before.
 
 
 
 
8.  Each morning we have to clear all the "snakes" from the bathroom before he can get a shower.  He does this all during the day too.  He comes and lets me know that there is something scary under the fridge or in the bathroom.  Lucky for us our finger guns are always at the ready.  Such an imagination!
 

 9.  For the past few weeks he has been taking a shower and dressing himself without tantrums...a little whining...but no full blown nuclear explosions.  He is capable, but usually unwilling to participate. This is from today.
 
 
 
 
10.  His ability to multi-task seems to increase every single day.  Amazing focus in his otherwise very unfocused world.
 
 





 So many miracles for one little guy.  One of the sweetest things he does is run to the picture wall in the living room whenever something wonderful or exciting happens and puts his little hand up to his mouth, and babbles the bit of news to his sisters and it is so sweet.  It makes me cry every single time, because he misses them just as much as I do♥
 
 
Lastly, Scotty's friend Abby was leaving, after giving us some much needed respite, and he stopped her and gave her the "wait a minute" sign.  He very slowly and patiently searched his Ipad for his TapToTalk program for what he wanted to tell her.
 
The important thing he wanted to tell her was "I love you."
He left us all speechless and needless to
say there was not a dry eye in the house♥
 
 
Sometimes we will never know
the true value of a moment
until it becomes a memory.
~Unknown~
 
 
 
So funny, so cute and so sweet!
 



Tuesday, January 8, 2013

God Bless Us Everyone


Under our tree this year were 
many brightly wrapped packages...
most of which in a years time 
we will not even remember.

But there is one gift that that Santa brought 
that we will not likely forget.
Santa brought the flu...

Fever...check
Sneezing...check
Coughing...check
Aches...check
Exhaustion...check
Headache...check

Chicken soup replaced our Christmas ham.
Dry toast replaced our Christmas cookies.
Ah-choos replaced our Christmas music.
Emergen-C packets were our Christmas candy.
And hot tea with honey and lemon 
was used to toast the holiday.
Certainly not the festive holiday season we all anticipated,
but at least we were all together
 united in our misery.

Needless to say it was IMPOSSIBLE
 to get one single "Christmas Card" worthy photo.
So in between my wracking coughs 
I made an executive decision
to skip cards this year...honestly it was a relief.

But then the calls started coming...
Relatives and friends worried and wondering if all was well.

Well alrighty then...


































♥The Baston Family Christmas in a nutshell♥



Before Christmas I found a website  
 to make a personalized DVD from Santa to Scotty. 
I wrote the dialog and a very convincing Santa talked directly
to Scotty with the help of an 
Elf named Sarah signing in the background.

Here is a link to our Santa Story 

We were sure his reaction would have 
been one of screaming, jumping up and down
and general over excitement.

Instead he was very contemplative 
and for once he was actually "speechless."
His face in the following videos is priceless.
I love the "uh-oh" look on his face.
So sweet and needless to say he 
continues to watch it daily.

Part 1

 Part 2

He still looks in the dryer for the
coveted "one more" present.
Santa will most definitely make a few
surprise visits to the dryer this year
when someone needs to be reminded to
do everything his mom and dad tell him
and to use a quiet voice and nice hands.

Thanks Santa♥


And God bless us everyone...
Because the flu is a gift that just keeps on giving!

Wednesday, December 19, 2012

Dear Santa,


It's me Scotty...
Can we talk?


I know there is a very good chance my name 
is not going to appear on the "Nice" list this year.

I realize in your omnipresence that
you have most likely seen some stuff
that shot me right into the number one
position on the "Naughty" list.

I tried really, really hard to be good but,
I broke some stuff...not limited to...
but including parts of our house.
I wasn't always nice to my mom and dad,
and I pulled my sister's hair and hit the 
people that love me and take care of me.
And I yelled...oh how I yelled...

 But I am really, really, really sorry.
I know you get this a lot,
but it really was out of my control,
and as devastating as it was to everyone else
it was terrifying for me.

 But I am better now.
Whatever was making me hurt inside 
doesn't hurt so much anymore.
I still struggle everyday and I probably
always will, but I know one thing for sure...
No matter how "naughty" I am my mom and dad
will never, ever, ever give up on me,
and even when my devilish alter ego makes an unwanted
appearance they will never stop loving me.

So dear Santa my list this year will be very short
since I really have everything I will ever need.
If I absolutely had to come up with a list it would be
 pretty much identical to my list from last year...
and the year before that...and the year before that...

A guitar, a baby, a snake, and a slinky.
But what I really, really, really want this year
Santa, is for my sisters to come home.
I miss them every single day, and
nothing makes my mom happier than when
we are all sleeping under one roof.
Merry Christmas Santa.
And I hope you can forgive me.
Hugs and wet slobbery Angel kisses,
Love, Scotty
P.S.  I am not making any promises but I am really, really,
gonna try to make the "Nice" list this year.






 

Tuesday, December 11, 2012

♥It's A Wonderful Life♥

Halleluiah
Praise the Lord
It's finally here..
 Parade Day!


All year long any route that takes us in the vicinity of our Main Street (which is usually daily) causes Scotty to ask about the parade.  As soon as the first Christmas decorations hit the stores his parade frenzy kicks into high gear and brings about an onslaught of near constant frantic signing.  His litany of questions includes, but is not limited to the following: Can we go to the parade?  Can we sit at Debbie's office to watch the parade?  Will she have cookies? Mom will you come too?  Dad will you come too?  Then he will list the cast of characters he wants to see there... and it is a very looooooong list.

And repeat ad nauseam...
for hours...
for days...
and for months.

Personally, I usually can't wait for the parade
TO BE OVER.
So we can finally get a brief reprieve 
from the daily line of questioning. 
 His persistence and tenacity are
 to be applauded I suppose. 

However, this year something changed.
As I looked around at the faces that
surrounded this boy of ours,
 most of whom have long ago
grown out of their "Parade Years,"
I realized once again just how blessed we are.
The adults no longer come to watch
 their children in the parade,
and the children, now adults, have long 
outgrown the magic of Santa Claus. 
Yet every single year those that are 
available come to the parade.

They come for Scotty.

I realized that this yearly tradition quite possibly
would have fizzled out by now
if not for this sweet boy of ours.
This boy who still believes in Santa.
This boy who reminds us how important it is
to always keep the joy and mystery of
Christmas in our hearts.




 As we wait for the parade to begin,
Scotty anticipates the arrival of every one on "his list."
 As each new person arrives and he tells them where to sit,
his JOY grows almost to immense for his body to contain.
He nearly vibrates with ecstasy.
I believe now that his parade attendance
check list is a also a place for
counting his blessings. 

I see my son cocooned in unconditional love by friends 
who would move heaven and earth to make him happy.
It leaves me nearly breathless with gratitude.
No longer will I dread the upcoming 
parade and the onslaught of questions.
Instead I will anticipate it with 
as much enthusiasm as Scotty
as a time to count our blessings.
IT REALLY IS 
A WONDERFUL LIFE!

"Remember, no man is a failure 
who has friends." 









Parade Memories
From Christmases long, long ago... 























Now the serious
 countdown begins...