Thursday, November 6, 2014

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


Monday, November 3, 2014

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:



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....