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!

Faith is...

…the substance of things hoped for, the evidence of things unseen.  Hebrews 11:1

 Faith by its very definition is the acceptance of what we cannot see but feel deep within our hearts.

My faith is learned.  I practice, I pray, I read, I am a constant seeker of knowledge always striving for a stronger faith and a deeper understanding of all things unseen.

But not our Scotty…Oh no...his faith does not come from a book, a religious education class or a yearning for knowledge in hopes of explaining the unexplainable…

…It just is.

Since he was very young he has always been a very holy little fellow.  

Even as a very small child he would fold his hands before every meal, and even at school  we were told he would pray before lunch.

Often times as we were rushing to get a quick dinner so we wouldn’t be late for some evening activity that required us to be in the car ten minutes ago, we would find him sitting quietly at the table…hands folded…reminding us to slow down and take a moment in our hectic day to give thanks.

 He reminds us every single day to see holiness in our ordinary. 

He will sometimes kneel down in prayer for no reason that is apparent to us, but we are left with no other choice but to join him.

He blesses himself with water from the dog bowl, the fish bowl, a water fountain, a duck pond or his cup of water at dinner. To Scotty it is the blessing itself not the holiness of the water.

He has always loved to go to church.  Though he doesn’t often make it to the end of the hour long service, he finds the ritual of the mass both familiar and comforting.  In our faith we do a lot of standing, sitting and kneeling. Scotty is always five seconds ahead of everyone else in the church doing the Catholic calisthenics… including the priest.  Though most times it appears he is not listening...clearly he hears every single word. 

Learned behavior…possibly.

Habit…maybe. 

Sweet…most definitely.

 

Last week I wrote of my personal journey this past year through the bible and of God’s impeccable timing.  I was not the only one in this family who has been on a God driven quest.  It seems our Scotty has been on one of his very own.

During this past year and our unplanned visit to hell and back, Scotty’s “holiness” moved to a whole different level.  As my friend Becky and I started our bible pilgrimage she gave Scotty a bible too.  A children’s bible with cartoon pictures and not a lot to distinguish itself from the hundreds of other books he has access to… none of which he can read. 

Like all books, he studies his bible upside down, he has always done this and we have never been able to figure out why. This particular book, from his much loved friend, became his constant companion.   He took it everywhere…sometimes looking at it…sometimes just holding it tightly. 

Soon after the worldwide prayers began and a sense of calm began to settle once again in our world he began spending many hours listening to church hymns and rocking in his chair by the front window, sometimes strumming his guitar, sometimes clutching his bible to his chest.

He also became focused, and by focused I mean OBSESSED as only a child with any form of autism can be, with watching mass on TV.  EWTN became his favorite station and even the promise of The Crocodile Hunter or The Three Stooges could not entice him away.  Standing close to the television and mimicking perfectly the movements and actions of the priest was always his activity of choice.

His reverence is humbling.

His usual attention span is that of a gnat, but for church TV he was and is still captivated for hours at a time.  It is here that he seems able to shut out all the chaos and all the noise. 

I watched in awe as his tense and broken body began to soften and heal under the quilt of peace that seemed to wrap itself around him.

And it took my breath away.  

There is something so much bigger at work here and I am in awe. I am in awe of God’s constant presence in our life and in awe of this boy and his devotion.

Faith is…the pure and simple light of God that shines from my son's eyes and warms us all. 

And as I have mentioned before in the small handful of words he has been given he can say amen.

Amen…So be it.

                                                        

 

 O Lord my God, I cried to You for help, and You healed me. Psalm 30:2

Disclaimer:  To all my writer friends and editor friends, I know my writing is quite a mess, but I just decided to write from my heart and not worry about all the things that I am sure are driving you crazy.  They are driving me crazy too! Forgive me:)

A Mom and Her Bible

Last year at about this time our relatively manageable life with Scotty took a sharp turn of nightmarish proportions. It began with a seemingly innocuous facial twitch.  The twitch quickly turned into a constant source of pain.   The crying that followed was nonstop and we were incapable of easing his discomfort.  

He lost his appetite, he lost his personality, he lost his smile, and he lost his joy.  But the saddest loss of all was his laughter. 

And for almost a year we lost our Scotty to whatever was causing him so much pain and suffering. I have never been to hell, but I understand it to be a place of misery and anguish and it felt like we had taken up residence and were never going to be able to leave.

In a very short period of time we went to six different doctors and all they had to offer us were possible causes but nothing definitive and no real solutions.  The general consensus was the medication Risperdal that he had taken for fifteen years had caused a condition called Tardive Dyskinesia.   It manifested itself as involuntary muscle movements in his jaw.  These symptoms can appear after many years on this particular medication.

So we took him off the medication slowly as recommended, and with each decreased dose his behavior became more and more erratic.  He became violent and aggressive and as hard as it was on us my heart broke for poor Scotty.  In his moments of uncontrollable rage we saw panic and fear in his eyes…never anger.  

He was terrified and so were we.

For the first time we were confronted with the very real possibility that we were no longer going to be able to care for him and it paralyzed us with fear. 

Lying in bed one night I remembered something our priest said, “You will never truly know how much you need God until he is all you have.”  And that is exactly where we were with nowhere else to turn.

The burden was so heavy and we were stumbling under the crushing weight.  I reached out to everyone I knew and pleaded for prayers.  Scotty literally was on prayer chains all over the world.  Our burden immediately began to feel lighter.

The very next day we saw the briefest glimpse that our son was not lost to us forever.

And it started with a laugh…a sound that had been absent in our home for months…Scotty’s laugh so full of joy filled us with hope.  

Slowly and cautiously we watched in awe as he steadily, one tiny step at a time, regained his “Scottyness”.  There was nothing to account for this shift...nothing had changed…except the prayers that were being said for him.

Gradually our Scotty came back to us.

Reflecting back I now realize that God had started preparing me for what was just ahead even before we saw any sign of a problem.  It came in the form of a simple request from my friend Becky.  She decided she was going to read the bible…every word…and she wanted me to do it with her.  Never one to decline a challenge I accepted.   

So every day in the quiet of the early morning hours I sat and had coffee with God and read His word and I listened.  Very rarely did I miss a day and the desire to meet the challenge soon became so much more.  

I hungered for words of comfort and guidance and hope... and there they were.  The bible so full of hidden treasures just waiting to be found  fortified me and sustained me.

 My journey through the bible took a year… which is the exact amount of time it took Scotty to come back to us.  

Coincidence…I don’t think so.

I believe with my whole heart that God placed the desire to read His word on my dear friend’s heart.  And in his whisperings he encouraged her to invite me on the journey with her.  Without His words pouring into my heart each day I would not have had the strength I needed to bear the weight of watching our son suffer.

So here we are a year later in a better place than before. Thankfully, we are back to our relatively manageable life…stronger, wiser, definitely more grateful, and so very, very happy.

A little side note:

When I started this blog I really had no idea what direction it was going to take.  My intent was to share stories about Scotty so that we might be an inspiration and a comfort to other families who had children with Angelman’s Syndrome.

Clearly God has other plans for this blog.  Each week I sit down with my idea for the week and start writing and yet when I am finished it looks nothing like what I had envisioned.  I am still sharing our stories like I planned but, I am always surprised at the direction they take.  A year ago, they may have just been stories but now they seem like so much more. 

Coincidence…I don’t think so.

The mind of man plans his way,

The Lord directs his steps.

Proverbs 16:9

Happy Birthday Scotty

Scotty,

Well my little man today you turn 25...

            Twenty-five years ago you entered our world so effortlessly.

In an instant you transformed us into mom and dad.

You made us a family.

Every time I look at this picture I remember this young girl who had spent her whole life imagining you... dreaming of you.  In her face I see all her hopes and dreams for her baby that she will soon hold

 in her arms for the very first time.

 My heart aches for her as she balances on the precipice of something enormous... these last few minutes before her world changes into something unrecognizable.

And knowing now just how many times her heart will break as she watches her son struggle day after day to find his place in this world makes my heart hurt.

And all too soon it would became apparent that the plans that God made for you Little Guy, were much different than the ones she had imagined.

 

 

 

I used to lay awake at night and cry for all that might have been and all that would never be.   

And I wanted answers...

         ...I wanted to know why

                   ...I deserved to know why didn't I?

 Why did this have to happen to you?  What exactly was God’s purpose in burdening you with this rare genetic anomaly called Angelman’s Syndrome?  Why were you given such a heavy cross to bear?  

Or was I to blame?  Was this in actuality my cross to bear?  Was watching you struggle each day to eat, to walk, to communicate and to fit into this world really a punishment for my sins?  Believe me when I tell you that these would have been your questions too.

 I desperately wanted an explanation.

 Twenty-five years later I still don’t have any concrete answers. 

 Not really.

 But that's okay, because I finally realized that instead of wasting so much time questioning God and his motives I should have been looking at you. 

 All the answers I would ever need were right in front of me all along. 

 The answers could be found in the hundreds of 

tiny miracles that  punctuate our days.

Over the years we have watched you

shatter all expectations. 

  

 You have taught me to always expect a miracle.   

Because with you...

...everything is a miracle.

So many lessons I wanted to teach you and instead you have been the teacher and I have been the student. Being your mother has been a continuous lesson in humility, acceptance, compassion, strength, grace, gratitude, hope, persistence, joyfulness, patience and faith. 

 

You're happy.   You're content.  You're loved.

 You care nothing for the things of this world.

  Love is your gift.

You, my son, are love in its purest form.

You love with a deep, 

 indescribable, unconditional love.

It is the way God loves us and the way

 He wants us to love others.

 

 I am humbled that God chose me to be your mother. 

So Happy Birthday my Sweet Boy….  

You may not be the son I dreamed of long ago…

 ...You are so much better.

You are so much more than I deserve.  

Love, Mommy

 So we have come to know and to believe the love that God has for us. God is love, 

and whoever abides in love abides in God, 

and God abides in him.

1  John 4:16

Moments of Impact

I love quotes, all kinds, they lodge in my brain until I can find a way to make sense of them and apply them to my world. I have black and white composition books filled with random quotes and scripture just waiting for any opportunity to share them.

Last week at the movies with a friend the narrator stated that,  “Life’s all about moments of impact and how they change our lives forever.” It's true... each day is filled with moments of small impacts that steer our day in different directions...a flat tire, a sick child, a stubbed toe...all minor inconveniences that punctuate our day, but still have the ability to alter our course.

Then there are the moments of impact that are so powerful that they take your breath away with the force of the blow...it is the moment of collision between a  life you thought you were going to live and the life that in a instant turns into one you no longer recognize.

You find yourself being thrown into a world..  a life you are completely unprepared to live.

Immediately my thoughts go to Scotty and I wondered when was the actual moment of impact.  Was it when we first realized that something was terribly wrong?  When the geneticist called to say that his DNA was positive for Angelmans Syndrome?  When the realization hit that nothing in our world was ever going to be the same again? 

 Or was it when we realized that this sweet boy that we had set so many of our hopes and dreams on was never going to play t-ball, enter the science fair, go on a first date, drive a car, go to college, get married or have a family…was that the thing that brought us to our knees?  Was that the moment everything changed?

Looking back I can’t seem to remember the exact moment... I think it occurred to us gradually over time.  I think if the awareness had happened suddenly the impact would have been too much to bear.

We slowly, over time realized God had a different scenario than the picture we had imagined. And so our journey took a sharp detour into the unknown and sucked us into a vortex of unfamiliar people, places and things....and we were  faced with a reality that was almost to overwhelming to grasp.  

One thing I know for sure, Steve and I were not the only ones who felt the ripple effect of this impact.  The force of the impact on our daughters began before they were even born.  Stevi and Sarah were born into a life completely different than everyone they knew…a life that for them was filled with so much compromise and so much disappointment.  It was a world where they never came first.    We will never know completely the effect of the impact on our daughters, but I do know this about these girls, about all of us...

...Scotty changed us.

He has made us kinder, gentler, more patient, more loving people.  He has brought out the best in all of us.

 Our beautiful, beautiful girls have been able to absorb the impact with grace and love and compassion.  Their laughter has filled our home and  lightened our burden. In the place of the little girls we still hold in our hearts, we see caring and confident young women full of love and compassion and who will both make this world a better place.They are strong and brave and we are so very proud of them. 

They are without a doubt the best part of us.

Sudden moments of impact are life altering... shattering normalcy... crushing dreams...taking your breath away.  Leonard Cohen said, "There is a crack in everything, that’s how the light gets in..."

... And so our challenge is to pick up the the shattered pieces  and fit them together the best we can...and  the light that seeps through the cracks warms us and sustains us and reassures us that...

 It was His plan all along...

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a Future."  Jeremiah 29:11










***P.S.....Rest in Peace Davy Jones, you were my first true love