It Is What It Is

As I was looking over my previous blogs and trying to decide what to write about this week, I realized that it sounds a bit like we float through our days on the wings of angels with a faith so strong and a burden so light.

Not even close! Nothing could be farther from the truth.

Most days look very little like the relaxed and happy  face in the photo above,

 And more like this!

There is not a single day that goes by that my husband and I do not sigh in relief for any brief moment of respite…a moment to take a breath and relax.

The very word relax to anyone who is a caregiver, whether it be a special needs child, a spouse or an elderly parent takes on a whole new meaning. 

The definition of relax that seems to fit the best is:  To attain equilibrium following the abrupt removal of some influence such as light, high temperature, or stress. 

Stress it is…

Stress in our day comes in many forms. 

First and foremost it comes in the form of the mind numbing effect of sleep deprivation.  Scotty has never been a sleeper and this is something common to Angelman's Syndrome.  It dulls our senses and transforms every minor incident into a mega disaster that can rival a catastrophic event like the sinking of the Titanic. 

In order for us to obtain that much strived for equilibrium we must minimize the constant activity, constant demands, and the ever present din of noise. 

In trying to maintain our own version of Utopia I must constantly remind myself to have reasonable expectations of Scotty’s capabilities and his limited ability to understand and process his world. 

Scotty wakes up each morning and in his sleepy, barely awake state begins his litany of requests.  The list, in no particular order, consists of requests/demands to go bye-bye ANYWHERE, but usually he wants to go to church, a parade, a circus, a rodeo, out to eat, to buy a new shirt, go to Grandmas, pick his sister up from the airport, stay at a hotel, fly in an airplane or have a party… all day everyday…sun up to sundown. 

The response he is usually okay with is,           

”Maybe later.”  

Usually. 

I must carefully measure every word that comes out of my mouth and try to find answers to the constant barrage of demands that in no way seems like I am saying NO.  If the dreaded word slips from my lips I brace myself because the word NO turns him into a yelly, bangy, breaky, angry mess whose main mission is to bring down the house!

Even our very good days are at best exhausting. It is a bit like walking through sand…your legs get tired and your progress is slow but you are still moving forward.  At their worst, our days can feel a lot like walking in quicksand. With each step we get sucked down farther and no amount of struggling will release us from the muck that is our day.

A good day or a bad day can’t be predicted or altered once it has begun.

My wise and calm husband’s litany contains one declaration...

It is what it is.

And he’s right. 

Thank God for Steve...

Thank God, Thank God, Thank God!            
                              

He never wavers and his patience, kindness, steadfastness, and devotion anchor us and hold us all together.

 Scotty and Steve have their litanies and I have mine…

Live quietly, Speak softly

Move slowly, Breathe deeply,

Listen carefully, Anger slowly,

Show compassion, Pray unceasingly,

Love unconditionally,

Have courage, Have faith,

Be happy, Be content,

Count my blessings gratefully,

And trust God.

I make a conscious effort everyday to find God…I look for him in the laughter and in the tears because he is always there. 

 I choose God…and He always chooses me.

This is the day which the LORD has made;

 Let us rejoice and be glad in it. 

Psalm 118:24

Because…

… It Is What It Is!

 Every afternoon we sit outside and wait for Steve.  If  I tell Bonnie to get in the house she jumps up on Scotty's lap.  

Every other second of the day she avoids him like the plague!