God, Me, and Angelman Syndrome

     "To live a life of uninterrupted happiness in God, 

looking on every circumstance as coming from God, 

and thanking Him for it-

that is Christian perfection."

Merlin Carothers

      What if I were to say that I am thankful for Angelman Syndrome? I am submitting to the all that read this post today that I, Joanne Baston can truly and honestly and without hesitation praise God for Angelman Syndrome. 

     I can certainly praise God for all the obstacles my beautiful boy has overcome.  He has effectively shattered the list of things we were told he would never be able to do. He can walk and he can run.  He can perform basic tasks like dressing and helping with chores.  He can feed himself and thankfully he is completely toilet trained. He has a "job" he loves and approaches most work related tasks with great purpose and commitment.  I can praise God that his days are filled with meaning and purpose. I can praise God that the seizures, that have taken too many of our angels lives and are common to the syndrome,  have been minimal and for the most part controlled for our boy.

     But believe it or not, in recent months I have starting praising God for all the chaos and even for all the sleepless nights. I can praise Him for the mind-numbing exhaustion and the long days that are filled with enough work to keep ten people busy. I can even praise Him for the rhythmic, torturous, constant slapping of his hand on the leather couch that could make the sanest of the sane seek a psych evaluation. (and yes, he is doing it right now) I can praise Him for the cataclysmic havoc that shakes our house that our little human tornado single handedly has the power to create.

     Although praising God for a smack to the face, a pinch that bruises, and the general spectacle he can make of himself in public proves to be more challenging, but I am working on it.

     Do I wish Scotty did not have Angelman Syndrome? Of course I do, but I wish it for him not for me. Will I support the organizations that are funding research to find a cure? Absolutely...until my dying breath. The hard reality is that no amount of wishing is going to change the fact that my son, at this moment in time, has Angelman Syndrome.

     So who am I to question the motives of our God who wonderfully and perfectly made this boy?

     I joyfully accept the presence of Angelman Syndrome.

     I believe with all my heart that Scotty is exactly the person he is supposed to be and we, through the grace of God, have been blessed beyond measure to be his parents.  His plan is clearly at work in our lives.

For because of our faith he has brought

us into this place of highest priviledge

where we now stand,

and we confidently and joyfully look forward

to actually becoming all that God

has had in mind for us to be.

Romans 5:2

     We all at some point in our lives face a challenge that knocks the wind out of us...a trial that we are sure we don't have the strength to make it through.  But we do, and what is on the other side of the seemingly unscalable mountain of pain is always something more wonderful than anything we could have imagined. After all if our lives were easy how would we ever know the absolute joy that comes when we see first hand God working in our lives?

     I recently read, Power in Praise by Merlin Carothers. In this book that was published in 1971 we are reminded that, "Praise releases the Power of God into our lives and circumstances, because praise is faith in action.  When we trust God fully, He is free to work, and he always brings victory.  By complaining and grumbling we are actually accusing God of mismanaging the details of our day."

     Praise is faith in action.
     Give it a try.  What do you have to lose?
    I can and will continue to praise God for Angelman Syndrome...and mean it.
 

 I will bless the Lord at all times:

his praise shall continually

be in my mouth.

Psalm 34:1

A Really Big Moment in the Sandbox

Guess What?

I am taking over my mom's blog this week to

 share some very cool news about my mommy.

She started this little blog about me over a year ago and,

trust me when I tell you that I give her plenty of material.

I don't mean to brag but,

 I think it is safe to say that my shenanigans are EPIC!

When she started this blog her goals were simple:

1. SPREAD AWARENESS FOR ANGELMAN SYNDROME.

2. Be an inspiration and a source of hope 

for others who are struggling

in this very confusing and chaotic life we are living.

3. Maybe, just maybe, someone would be

 interested in her ideas and storytelling 

and fulfill her lifelong desire to be a published author.

SO GUESS WHAT?

(.....humming Jeopardy music....)

If you guessed #3 you got it!

She sold one of her stories 

(she would add the word FINALLY to this sentence)

 about yours truly to 

GUIDEPOSTS online magazine.

They sent her a contract and paid her and everything!

It is the real deal!

So please follow the link below and leave a comment

and share it on Google Plus, and Facebook.

Don't forget to mention the blog too if it will let you.

 SHARE, SHARE, SHARE!

Her hope is to make a big splash on the website

so Guideposts will want to print more of her stories

about living with

ANGELMAN SYNDROME!

Can you imagine the impact?

LINK:

Guideposts Mysterious Ways The Longest Prayer

Disclaimer on the actual coolness factor:  I sent them the story...actually I have probably sent them 50 and entered several contests with book ideas.  I got my first taste of editing.  Wow!  Most of my ideas are there and many of my words but....

A New Year Experiment

A few weeks ago this popped up on the Facebook feed:

In my ongoing quest to be more organized and less scattered I decided to give it a shot! I thought this looked simple enough even for someone of my advanced age and athletic ability.

Monday

1.De-clutter

2. Dishes

3. Make Bed

4.Clean 2 & 1/2 baths 

Seems reasonable...

Unless of course your Monday begins at 3:45 am.
That my friends makes this a little more challenging.
I spent the first two and a half hours
of my day
 repeating some version of the following phrase:

"Lay down and close your eyes...No, we can't have a banana
(go bye-bye, get a surprise, watch a parade,
order pizza, go to work, get a donut...)
until the sun comes up."

7:30- 9:30 Drink coffee, get breakfast, feed the dogs, empty the dishwasher and try to have a semi-coherent conversation with my husband before he leaves for work.
Goal #2 Dishes accomplished!
I am off to a promising start.

Finally ready to begin and I estimated that even
with interruptions I could do all three bathrooms,
 including cleaning Millie's cage, in one hour.

I went looking for my much too quiet helper.

NOW he sleeps!

Hmm...I could tackle a bathroom, but instead decide to jump on the treadmill for a few minutes and try to accomplish my other resolution...walk 10,000 steps. Of course that was all sleeping beauty needed to get off the floor. He pulled me off the treadmill and insisted on a 15 minute dance party and then I had to  I listen to him "play"  the
 theme from Titanic on the piano.
And it went on and on...

10:00- Now we are ready.
Bathroom #1 which is rarely used but,
 it is the one where smelly Millie lives.
Although he loves to hold Millie we still had
 to endure the usual 15 minutes of yelling,
banging and throwing things on the floor in response
to the question,
"Scotty will you hold Millie for me?"

10:15- Okay now we are ready.
Bathroom #1 took me 48 minutes to clean because...
I had to sit with Scotty so he could show me how cute Millie is
and then take some pictures to show dad.

Oh she is cute alright and, but oh so smelly.
She is currently in the running for the
 worlds oldest living guinea pig.
Yea?

OF COURSE as soon as I finished Scotty
desperately needed to use the bathroom...
the clean one.
Not the one 15 feet down the hall that was next on the list.
Oh no, it had to be the sparkling clean one. Sigh!

In the end I decided Millie's cage didn't smell that bad
 after all and could last another day or two.

11:03 Ready to begin bathroom #2.
I decided to stick him in the tub
and kill two birds with one stone,
because at 11:03 we were still not dressed.
Again he had to go through his usual shenanigans
in response to the quietly and cautiously spoken statement,
"Scotty time to get dressed."
20 minutes later...

I would have posted a video of his ridiculous shenanigans,
but I hadn't accomplished goal #3 ...
Make Bed.

Finally, smiley boy is submerged in his now lukewarm
Epsom salt/Monsters University bubble bath...
Which he loves, but still finds the need
 to say no to everything
including those things he loves.

 Including shenanigans it took 50 minutes to clean
the entire bathroom.
 It took an additional 22 minutes
for Scotty to get dressed.

 It went something like this...
Me: Put your socks on please.
Scotty: Points to the TV
Me: We will watch a movie later.
Put your socks on buddy.
Scotty: Points to his sister's picture and signs airplane.
Me:  Next time Stevi comes home
you can pick her up at the airport.
Please put your socks on.
Scotty: Points at Sarah's picture and signs dog.
Me:  Her dog is downstairs and you can see him when you
put your socks on.
Scotty:  I want a treat.
Me: As soon as you PUT YOUR SOCKS ON.
Etc, etc, etc.

In a rare magical moment of cooperation
my little helper loaded the washing machine.


12:35 Need more coffee
Scotty was contentedly watching a DVD so I
jumped back on the treadmill.
Current step count1246

12:36  Scotty wants lunch...and he wants it now.
Current step count 1256
This is a good hour long process because he has to help
 prepare and clean up his meal.

1:36 Time to walk the dogs...
30 minutes of complaining...
20 minutes of walking.

2:40 I decide to jump back on the treadmill
before I tackle bathroom #3.
Current step count 3342.

2:41 Scotty gets in the pantry and steals a banana and
two peppermint patties.
Chased him around the house.
Current step count 3398.

3:00 I need a nap.
I put in his favorite movie, Little Miss Sunshine,
because certainly he is exhausted
and will sit still for 90 minutes.

3:00-4:30 I read 11 pages of The Book Thief for book club...
At which time I start asking my
scoochie son to please sit still
and end up pleading, begging and bribing
him to sit still until the movie is over.


4:33 I turn off the movie and try to muster up some energy and patience.
I notice Mr. Noisy pants is unusually quiet.
Really?
NOW he sleeps!

I don't think so.
I roused the sleeping bear off the couch
so he could help me try to accomplish
goal #1 De-clutter.

5:18  Steve calls to say he is on his way home.
Crap.

1. Downstairs bathroom is still not done.
2.Towels are still in the washer.
3. I have only walked 5002 steps.
4.I still haven't taken a shower (no towels anyway)
 and am really questioning if I have even brushed my teeth.
5.The Easy Chicken Corn Chowder I was going to make
has a prep time of 25 minutes...
obviously I need to triple that
plus a cook time of 30 minutes.
Sandwiches it is then.

 I  realize a few things from my little experiment.

1. I am pretty sure I can classify
this resolution as an epic fail.
2.This is way more cleaning than
I can manage to do in one day
and I didn't even finish my assigned tasks.
As I write this a day later...
those towels are still sitting in the dryer
and the downstairs bathroom isn't clean.
3. I am never going to make it to 10,000 steps.
4. I really need to get a shower before noon.
This should probably be #1.
5. Lastly, I am very aware of where all my time goes.
It doesn't go into my messy house obviously,

but into this beautiful, brown-eyed

bundle of energy instead who

even prays when he sleeps♥

 I will never be able to measure my
accomplishments by how many tasks I complete,
but it is abundantly clear to me that
every moment spent caring for Scotty
will always be more important  than
chasing dust bunnies.

Whatever you do, work heartily, 
as for the Lord and not for men
Colossians 3:23

A Walk in the Park

You shall walk in all the way that the  
Lord your God has commanded you...
Deuteronomy 5:33

Our life obviously has never been "a walk in the park," but some days a walk in the park is all we need to turn a really lousy day around.  Especially if said park includes dad and food!  Scotty took his camera on our last trip to have lunch with dad, so today's post will be a photo essay by Scotty.

 On our way!  He always takes this same picture :)

DUCKS!

Duck poop...there were 53 photos of duck poop...

Daddy

Mommy

Poor Bonnie, it was so windy.

A few action shots

Some "Selfies"

A prescription for a relaxed Scotty:  A time for an all out sprint and a time to run freely without us reminding him to stop...And by reminding I mean yelling at the top of our lungs as we run after him in hot pursuit as we try to keep him from any and all dangers that are in his path. A little time to wander freely without us saying don't touch,you can't hug strangers, or don't touch that food it's not yours...and some bonus time with daddy is all he needs to release whatever demons he was battling on that particular day.

A prescription for a relaxed mommy:  A break from the routine and the monotony of our days, even though the routine, the monotony and the predictability are the things that keep our Scotty happy and content. A little exercise, a little  sunshine, and a time away from the constant noise and activity are all I need to get my head back in the game.

Just a closer walk with Thee
Grant it, Jesus, is my plea
Daily walking close to Thee
Let it be, dear Lord, let it be
Patsy Cline

 Last week was the anniversary of my father's passing and
I can hardly believe he has been gone for six years.
Patsy was his all time favorite singer and every single time
I am outside walking my feet seem to
automatically move to the rhythm of this song
as the lyrics fill my heart.

I've Had the Time of My Life

Today is one of those days that I want to remember.

To many just another ordinary Wednesday

in the middle of August, 

but to me it will forever be a treasured memory

that I will tuck away for a rainy day.

A day we almost missed  because our day began at 4am...
and I was soooooo tired...too tired to wrestle the beast,
but a 10 minute nap and a ridiculous amount of coffee,
and I was ready to go!

Our movie theater offered a
few classic movies this summer...

Ghostbusters, Grease, and Back to the Future,
 but today's offering was Dirty Dancing... 
one of my all time favorites and a movie Scotty

has seen hundreds of times.
So for a few hours this afternoon 

we traveled to Kellermans and lost ourselves

 in the familiar surroundings of the Catskill Mountains.

My children grew up on Dirty Dancing.
I am certain they know all the words

to the songs and most definitely
remember a few these sweet dance moves.

As we walked in this afternoon the movie had just begun,
 and as soon as Scotty heard the music

he literally jumped for joy.  

He immediately broke out some of his dance moves

and started laughing...hysterically...
the doubled over belly laughing kind of laugh. 

We go to lots of movies, but this is the first time he has 

ever gone to see one of his favorites.

HE..WAS...SO...EXCITED.

(And so was I)

It was contagious.

I didn't stop smiling through the whole movie. 

Oddly, or maybe not so much if you know me at all,

but I had tears rolling down my face at the same time for most of the show.

Partly because Patrick Swayze is

SO..DARN...HANDSOME,

but mostly because I was once again
reminded by my young son how to be joyful.

The kind of joy that bubbles up out of you until it explodes.

Thank you Scotty for reminding me just how lucky
I am to be able to spend my days with you.

Sure it's true that every day isn't like today,
but without all the 

terrible, horrible, no good, very bad days
that we sometimes have

a day like today wouldn't be half as wonderful...

It would have just been an ordinary
Wednesday afternoon in the middle of August.

Thank you for reminding me that is
perfectly okay to clap along 

really loudly (in perfect rhythm I might add)
to the music,and to sing very loudly
in a language only you can understand.

Thank you for reminding me
 that is perfectly acceptable 

to stand up in the middle of a
crowded movie theater
and dance, wiggle, and shake your booty
while you raise
your arms in the air and try to
get everyone in the theater to join you.

Thank you for helping me remember
what it feels like to have so much joy

bubble up inside you that it
makes you laugh and cry at the same time.

Scotty boy, today

I had the time of my life...

and I owe it all to you.

There is a time for everything,
    and a season for every 
activity under the heavens...

 a time to weep and a time to laugh,
    a time to mourn and a time to dance... 

Ecclesiastes 3

Holy, Holy, Holy is He

Truly I say to you,

unless you turn and

become like children, 

you will never enter the

kingdom of heaven.

Matthew 18:3

From the time Scotty was a very young child he loved to go to church.  In the last few years our church going little guy has turned his love of church into a full time occupation/obsession.  If this child got paid a dollar each time he asked to go to church, listened to the church playlist on his Ipad, watched mass on television, looked at his church books, or actually went to church he would be a billionaire.

His sweet Aunt Jo made him his
very own vestments for his birthday,
and when he wears them
he is reverent...he is holy...he is saintly.

 Alleluia

As soon as we open his door in the morning (or the middle of the night) his first communication of the day is always to ask if we are going bye-bye? The second...is it a church day?  More often than not he is still half asleep and if he doesn't get the answer he is looking for he slams his door and dramatically flops back down on his bed.

The last few years have been challenging and there have been many weekends that Scotty's behavior was so unstable we weren't able to go to church.  Slowly, as he has become calmer and more predictable we have worked our way back.  The last year was spent in a glassed in section behind the church... the room they have designated for all the fussy babies...the cry room, but we were there and that was a huge step.

In the past few months we have made our way through the glass doors to the back of the sanctuary.  Progress!

In the past two weeks we have crossed the final barrier towards "normal" for us. For the first time in several years Scotty was able to receive communion.  The three of us sitting together at mass and receiving communion together is something I was certain was out of our reach forever.

This boy of ours is fully present in every part of the mass. He sits, stands and kneels before everyone else, he follows along in his church book that he holds upside down and will never be able to read, he sings the Amens and Alleluias and his face radiates sheer joy.

I watched him in awe last week as he sat so peacefully and so quietly during the mass.  His face literally glowing with joy in anticipation of receiving the blessed sacrament. I saw that same glow of joy on his face when we celebrated his First Holy Communion so long ago.

Our beloved Father B was the kindest 

and gentlest man I have ever met.

To be in his presence was to be in the presence of God.

 Scotty's faith is simple and pure...it is perfect.
 I envy him.

We had the pleasure last week of celebrating the mass with a newly ordained priest who was on fire for God.  He led us through his journey to finding his vocation, but he told us that being a priest is not his vocation. He reminded us that our vocation is not to be a pilot or teacher, a son or  daughter, or a mother or father.  Our vocation is to be a disciple of Christ.

 

This boy of simple and childlike faith, without realizing it, is a perfect example of what it means to be a disciple of Christ.  Without even trying he is the most Christ-like person I will ever know.

He is joy.  He is light. He is  love.

And he is a blessing to everyone he meets.

For it is written,

"Be Holy for I am Holy"

1Peter 1:16

Can Everyday Be A Beach Day?

I found this photo on Scotty's camera. 

 It was taken over the edge of the deck.  

Initially I couldn't figure out what 

the black spots in the sand were, 

and then I realized it was a single set of footprints.

Looking at this I am profoundly reminded,

once again, of all the times that God has 

carried us all on this journey we are on with Scotty.  

The Lord replied, "My precious, precious child. 

I love you, and I would never, never leave you 

during your times of trial and suffering. 

When you saw only one set of footprints,

It was then that I carried you." 

Footprints in the Sand

On about day three of our recent vacation we all were comfortably settled into our "beach" routine.  Steve and I were beginning to experience the usually elusive phenomenon called relaxation...the state of being free from tension and anxiety. 

We were sitting on the deck enjoying a few moments of peace and quiet before our little noise machine woke up and I asked him how can we make every day a beach day?  Is that even possible?

Doubtful, but surely we can do some things each day that remind us to relax and to breath and seek a place of calmness and peace. 

 We can wake up early to see the sunrise.

We can close our eyes and remember the 

hypnotic, rhythmic, soothing sound 

of the ocean outside our window.

We can put away all things electronic 

and lose ourselves inside the pages of a book.

We can remember to laugh.

We can remember to play.

We can nap.

We can wander aimlessly seeking only

exquisite examples of God's handiwork

that surrounds us.

( I see three perfect examples right there♥)

We can take off our shoes 

and stick our toes in the sand, 

or the grass and ground ourselves 

in the feel of the earth beneath us.

We can remember to count our 

blessings and for 
the gift of our family .

We can seek rainbows 

and the promises they hold.

We can remember that no matter 

how big our storm is on any given day...

we can always choose to dance in the rain.

No doubt that God will continue to carry us on his shoulders in the days to come, but for a few weeks we were able to stand on our own...five sets of footprints walking alongside God for a brief time in His peace and in His love.

All of our footprints in the sand have long since washed away, but the memories we made and the peace we found will remain.

Now as Steve and I try desperately to hold fast
to our "beachy" state of mind our 

young son seems to do so effortlessly.

Of course that relaxed state of mind is always on his terms, 

but when he is at peace he is the King of relaxation.

And Jesus said, 
"Come to me all who are weary 
and burdened and I will give you rest."
Matthew 11:28