To Walk With The Angels

For he shall give his angels charge over you,

 to keep you in all your ways.

Psalm 91:11

We had the profound pleasure last weekend to walk on hallowed ground...

we walked in the footsteps of angels.

There were approximately 357
registered participants for the DFW walk.
There were 29 walks around the United States
and over a million dollars were raised!
I am not 100 % sure of these statistics,
but will correct them when I am.

(Scotty is in the very back on the right just to the left 

of the man in the red shirt who is standing by the tree)

A small portion of Team Scotty!

The rest of "his people" were walking with him in spirit.

Team Scotty raised $2000 which is astonishing.

What is even more incredible is that  25% of the

donations were from people that we have never even met.

People who in some way have been touched by his story...
People who have been touched by him.

We are overcome with gratitude.

♥And this guy was a ROCK STAR♥

He was happy, smiley and full of hugs.

 He even participated in the walk...

no bribery required!!

 This gorgeous, precious little angel
was the highlight of his day.

 They played and hugged and played and hugged...

such sweetness and innocence and pure joy.

It was breathtaking to watch.

Balloons were released in remembrance of
all the angels who have left us too soon.

This past year there have been so many...too many.

So we walk.

We walk with hope.

Hope for a lifetime free of seizures.
Hope that we will hear the sound of our angel's voices.

Hope that someday all our angels
will walk side by side with us.
Hope for a future that releases our children
 from the constraints of Angelman Syndrome.

There is hope in dreams, imagination,
and in the courage of those who wish 
to make those dreams a reality.
Jonas Salk

I couldn't help but notice all the young
families just starting their journey.
I don't envy them the years ahead.
The doctors that don't have answers, the medications that don't help, the endless round of therapies, the testing, the search for a school...a teacher...anyone who will understand their child and most importantly love their child, the constant battle to make sure your child is getting an appropriate education, the unanswered questions about the future, the frustration, the tears and the sleepless nights.

I don't envy them at all.
I guess if we look back there are a few things we would have done differently,
but that is no different than any other parent.
Suffice it to say that we are tired.
As my grandmother used to say, "We are plum wore out."

Though to us Scotty will always be our little guy, he was definitely one of the old folks at the walk.
Unlike the young families we met today, we are finally at a stage that we can look back and  say with confidence that we have done everything in our power to give Scotty the best life possible.  Our journey is far from over...it is just different now.  Sure we still have frustration and tears and sleepless nights, but we have settled onto the path that God has carved out for us. At this point all we can do is take one step at a time, walking in faith, walking in hope and walking in love.

"Walk by faith, and not by sight."
2Corinthians 5:7

If you would like to learn more about Angelman Syndrome click the link below.
ANGELMAN SYNDROME FACTS

Meant To Be

Face each day without expectation.

Experience to the fullest 

whatever adventure comes your way.

It is as God meant it to be.

These messages from God randomly appear on my Facebook page from time to time.  It is set up for a daily message, but mine appear sporadically and they are ALWAYS exactly what I need on a particular day....a day like today.

A day that started at 4am...with a wet bed...and a very wide awake Scotty. It happens...not often, but it happens and bless his heart he signs to us the rest of the day "sorry" and  "potty" and each time we hug him and tell him, "It's okay buddy, it happens."

Needless to say that by 5am we had accomplished more than most people do in an entire day. I sat sipping my first cup of coffee and contemplating how we were going to fill the next 17 hours. All I could seem to come up with was nap...nap...nap. One thing is for sure, a magnified case of the nasty, ugly "why me" syndrome was rapidly taking hold of this day.

Until I received my message.

Classic moment of God throwing a brick at my head once again to remind me to shift my focus and count my blessings.  In that same moment I glanced out my kitchen window just as the sun was peaking over my fence and beaming down on my freshly bloomed amaryllis.

It took my breath away.  I grabbed my camera and was shocked when I looked at the picture.  This is not what I saw... the camera lens must have filtered the light and replaced it with this beautiful rainbow aura.  Just think, if Scotty had not gotten up so early I would have missed this.  So with a few more cups of coffee under my belt I adjusted my outlook for the day and my attitude.

I am very fortunate that Scotty and I have the ability to meander through our days instead of rushing.  We have no deadlines, no pressing engagements no reason to hurry.  Today was definitely going to be a meandering day!

Today we had a wonderful spontaneous backyard adventure that involved a camera, a guinea pig, and lots of opportunities for him to practice focus, task completion, following directions and trying to increase his attention span from non-existent to a few seconds.

Ansel Adams in training!

Study in guinea pig by Scotty

We were able to wile away several hours on our little photo shoot where he took an astounding 397 pictures.  His favorite part is immediately transferring them to the computer so he can see them. Once the editing is complete we print out a little book to show dad. I have him sit on a big ball while we are editing so he is doing some impressive multitasking using his fine and gross motor skills and working on his strength and balance. 

So today, though long, was a wonderful day...just the way God meant it to be.

This is the day which the LORD has made;

 Let us rejoice and be glad.

Psalm 118:24

The rest of Scotty's photos from today are under the tab Through Scotty's Eyes  Scroll down  just a little to Backyard Adventures 5/7/2013.

♥6pm...Praise the Lord...DADDY'S HOME♥