Until My Last Breath

A few months ago this photo made its way through the Facebook news feed with the following caption:

A mother (97 years old) in China,

feeding and taking care of her paralyzed son 

(60 years old) everyday.

A reminder of the amazing human spirit of 

human compassion 

and more importantly, motherly love.

I can't stop looking at it.
An image of love.

A giving love. A selfless love. A sacrificial love.
And it is all in the details...
The simplicity of the surroundings,
the curve of her back,
and the grey in her son's hair.
I can only imagine what it must have
taken to prepare
this simple meal for her son,
and knowing that she will continue to
care for him day after day...
Until her last breath.

 I understand it,
because I too am a mother.

The moment my children were born my heart was
 transformed into something brand new.
Their very existence takes my breath away.
My heart whose capacity for such deep,
abiding love seems improbable,
but a mother's heart is capable of many things.
Love, unconditional and never-ending.
Agape love...
a love that demands nothing in return.

It is a love that will endure...
 Until my last breath.

I am privileged to be counted among
an elite group of mothers
who are raising a child/adult with special needs.
I am continually humbled by
 these phenomenal women.

The unforeseen circumstances of
our child's birth unites us all together.
We have been given the extraordinary assignment
of caring for someone who literally cannot live without us.

Every single day affords us the opportunity
to be an example of agape love.
In the midst of the chaos, the unpredictability,
and the mind-numbing exhaustion,
we are given the opportunity to handle each crisis
with an attitude of
 love, patience, kindness, goodness, faithfulness,
compassion, gentleness, and self-control.

I am currently reading the book,
Having a Mary Heart in a Martha World 
by Joanna Weaver.
In it she reminds us that,
"We are God's love letter to the world...
whether we like it or not, we're the only Jesus
some people will ever see."

She challenges us to become examples worth imitating.

I realize that I have been given a unique
opportunity to serve our God,
and it is all in the details.

I have been called.
I can continually strive to be an example worth imitating.
In taking care of this boy
I can be God's love letter to the world...
Until my last breath. 

By this everyone will know 
that you are my disciples,
if you love one another.
John 13:35

Update:  As many of you know, Scotty and I have started a little pet care "business" and it has been amazing, but that is fodder for another blog, but I had to share this.

We were leaving our friend Jack the boxer's house the other day and Scotty spotted a wall hanging by the back door.  Scotty called my name to show me and proceeded to kiss the wall hanging and then knelt down in front of it to pray...

It was The Prayer of Jabez and it had no markings on it whatsoever that would lead him to drop to his knees and pray...no crosses...no pictures...just writing and some design around the edges???

Jabez is an interesting guy, his name literally means born of pain and grief.  He was a hero of the faith in a generation of mostly unfaithful people, including his own family.  He called upon God and God answered his prayer.

Hmmm...

Last week someone posed the question on Facebook, 

"I believe in miracles, do you?"

How could I not?

“Each one of us, in our own lives,

 every day, can give witness to Christ,

 with the power of God, the power of faith.”

Pope Francis

All Dogs Go to Heaven

   

    And God made the beasts of the earth

according to their kinds...

 And God saw that it was good.

Genesis 1:25

 

 

So good.

Fourteen years ago Santa brought

us this little red-headed beauty.

We named her Lucy.

 And she loved us.

Two years later she blessed us with a whole pile of puppies!!

 

 

 

It was so hard to let them go,

but each little fluffy ball of love found a home with a friend.

Maggie, Copper, Nicky, Mac, Ace,

Baron, Beau, Colby and Peanut.

Looking back as a family, I am certain we would all

agree, that this was one of our happiest memories.

 

 

 

 

We kept this little beauty...our little Gracie Girl.

And she loved us.

Sadly,the sweetest dog that there ever was left us

today to join her mama in heaven.
 

 

 

Our hearts are broken.

 

 

 

When Scotty got up this morning we

 told him that Gracie was in heaven.

To Scotty heaven is up.

So today as he points towards heaven we will add our

 sweet Gracie Girl to his litany
of those we love that now live in heaven.

 

 

 

We will never understand how his brain processes such a loss.

I do know this though...it is not with sadness.

This boy of ours whose whole body vibrates with joy

over the simplest of things...does not seem to feel the

weight of sadness the rest of us are destined to experience.
 

He will cry if there is sad music or a sad part in a movie,

and he will cry if he is hurt,

so he does have the capacity to feel sad...

just not about such a loss.

At times having Angelman Sydrome is truly a blessing.
 

Or...perhaps, as I have often times suspected,

he knows all the secrets of the universe and just understands

things that us mere mortals in our limited

minds will never be able to comprehend
and he realizes there is nothing to be sad about.

 

 

I envy him.

 ♥Oh how she loved (tolerated) him♥
 

Today as Scotty points towards heaven and signs dog,

I will wipe the tears from my eyes and

be grateful beyond words

that for this boy of ours,

today is just a day like any other,

a day full of surprises
and a day full of joy.

 

 

I will also feel blessed that each time

the sadness overwhelms me,

he will be waiting to wrap me in

a bear hug, pat me gently on the back,
and kiss my forehead.

♥Rest in Peace Gracie Girl♥
You had the sweetest face and the softest ears.
You were a good and faithful friend.

Thank you for loving us.

 

By the edge of a woods, at the foot of a hill,

Is a lush, green meadow where time stands still...

...For here, between this world and the next,

Is a place where each beloved creature finds rest.

From The Rainbow Bridge 

Ch-ch-ch-ch Changes...

For everything there is a season,

And a time for every purpose under heaven.  
Ecclesiastes 3:1

Fall is a season of change, the leaves change, the temperatures change, and even we change into creatures who want nothing more than to curl up and hibernate for a few months. Fall is also a time for waiting.  We wait for the first snow...we wait for all our children to be under our roof again...and we wait for the old year to end and the new one to begin. 

 "The only thing constant in life is change."  True in an ironic/idiotic sort of way and both of my girls will confirm that I am not a fan of change, especially when it comes to the two of them.  As children they were always pushing forward  as they reached out with both hands towards all of their "growing up" milestones.  I on the other hand  always seemed to be pulling backwards and our days were often spent in an awkward game of tug of war.  Each new milestone was a turning point that took them one step farther away from me.  I do not like change.

"Certain things, 

they should stay the way they are.

You ought to be able to stick them in one of

those big glass cases and just leave them alone."

J.D. Salinger, The Catcher in the Rye   

Recently I came across an email that one of my oldest and dearest friends from college forwarded to me when I started my blog. The following is part of a "catching up" email that I  sent to her in 2001, and it describes our life with Scotty...and email that could have been written today...an email that even if written today would use the exact same words.  I am profoundly struck by the fact that very little has changed since 2001...very little.  Below is a small part of the original email. 

1988

 2011

---------- Forwarded message ----------
From:  Lynnae
Date: Tue, May 1, 2012 at 2:28 PM
Subject: Scotty...memories

Jo, Okay...So...I never throw important things away and that includes emails from dear friends that maybe some day will remind me of my past which is necessary more and more these days.  Take a look at the date, it was just yesterday.  I think you need to buy a zoo.  Miss you, Lynnae

October 7, 2001
Lynnae,

.......Scotty is like having a a 125 pound toddler, and all that goes with it...the tantrums, the stubbornness, and the exhausting, endless energy....add in the teenage hormones and look out baby....talk about the worst of both worlds.  

However, hopefully this will pass, but right now is really challenging, but we also get a snuggler, an endless supply of hugs and kisses, someone who still wants to sit on our laps..someone who still needs us to "watch" him do everything and clap. He will always get excited about Santa and Halloween and lots of other things that most kids grow out of.  

And hopefully he will keep us young.

He can't read or write or even draw a square for that matter.  He still loves Barney
and the Three Stooges and the Crocodile Hunter is his hero!
 

Hopefully he will be able to hold some type of job.  His passion is animals. Our golden retriever is getting ready to have puppies so he will be in dog heaven!  Steve and I have even thought of getting some property and opening a kennel and he could care for the animals.
Who knows.  We really just want him to have a reason to get up in the morning after he is done with school...Love, Jo

Hmmm...There is something in every single sentence of this that makes me cry.  Twelve years later we are still here...standing still...not moving...not changing...and waiting...and I can't seem to put my finger on what we are waiting for.  

Perhaps it is our season to stand still.

Perhaps it is our season to wait.

Perhaps, for now, this is our purpose under heaven. 

Our time for change will come,

In God's time.

Only then will it be our season to move forward.

Maybe Lynnae is right...Maybe we do need to buy a zoo.

May 2001

October 2012

You know, sometimes all you need is 
twenty seconds of insane courage. 

Just literally twenty seconds 
of just embarrassing bravery. 

And I promise you, 
 something great will come of it. 

Benjamin Mee

We Bought A Zoo

It's All About Me

As a mom those are words that very rarely, if ever, are true.  As Scotty's mom that statement is well... take your pick...at no time, don't hold your breath, forget it, nevermore, no way, not at all, not ever, not in any way, not in the least, not on your life, not under any condition a true statement.

Except for one week every October when my brother and I run away from home to a little cabin in the woods in the mountains of Pennsylvania.

For one week I get to nap.

I linger over my coffee.

I sleep when I want, 
eat when I want, 

and read when I want. 

 I get to do absolutely nothing.

I take deep breaths...long, healing breaths.

 I listen to a silence so quiet 
that it feels heavy in my ears. 

 I see rainbows.

 I see beauty. 

 I see God.

We spend our days reading, laughing, reading, driving around, reading, sitting on the porch, reading, drinking wine, reading and debating whose turn it is to lay on the couch to read.

My brother says he reads my blog...doubtful...he probably skims it at best so.................

Every year we pick one card game to play for the Championship of the Universe.  This year we played Monopoly, the card game, and kept a running tally for the week and well you guessed it....

 Once again the Universe is mine to champion!

 Poor guy has never won...not once...EVER!

So for one whole week it really is all about me and I am so very grateful for the time away.  I am so unbelievably appreciative of my incredible husband and this gift he gives to me once a year.  Even in his exhausted and frustrated state he never complains or whines or tells me how hard it is to manage all alone. 

I get to come home to a squeaky clean house...well except for dusting, because he doesn't dust...or toilets, because he thinks that for the last 29 years they have magically cleaned themselves...or freshly mopped floors, because he vacuumed so why do you need to mop??? 

Basically, he vacuums and puts clean sheets on the bed...both a HUGE deal in my book.

I get to come home to a husband, who already participates 150% in caring for Scotty telling me he needs to help me more.

I get to come home to my own little whirling dervish who loves with the same intensity that he exhausts.

I get to come home...to a place filled with memories and filled with people who love me. No matter how many times I go away, home is the only place I really want to be.

So for one week every year I have time to step back and take a good look at my life that often times seems overwhelming.  When I step back I can see past the noise and the chaos and see a family that is committed and loving.  I see a family who is willing to sacrifice all that they have and all that they are for each other.  

I also know that the same God that sent that beautiful rainbow in the mountains is the very same God who is in my living room every single moment of every single day performing acts of great beauty and great love.

I gained some much needed perspective 

and my spirit is refreshed and renewed.  

I am so very, very blessed.

"I love people. I love my family, my children . . . 

but inside myself is a place where I live all alone 

and that's where you renew your springs that never dry up."  

~Pearl S. Buck

 

Perks of Living with an Angel

And even if somebody else has it much worse, 

that doesn't really change the fact 

that you have what you have. 

Good and bad.

Perks of Being a Wallflower

Stephen Chbosky

This post has absolutely nothing to do with the book/movie Perks of Being a Wallflower, but the title lends itself to reflection.  I suppose that every situation, good or bad, comes with some perks...we just need to acknowledge them and give value to them.

Living with an angel is much like being a wallflower...it has forced us to live on the sidelines of life.  Certainly we participate in all the ways that we can, but it is always around the perimeter...up against a wall and close to an exit. Close enough to delude ourselves into believing that we are a part of the frenetic flow of the rest of the world.

In reality we are not participants. 

We are merely observers.  

We never get to sit at the cool kids table.

We are the outsiders.

So I decided to compile a list of 

the perks that come from living with our angel.

**Leave a comment below to add to the list!

1. Scotty has always been my get out of jail free card.  Spaghetti dinners, car washes, bake sales, cleaning up trash along the highway....Hmmmm, Gee I would really like to help, but I need to be home with Scotty. (My secret is out!)

2.  He has slowed us down and kept us from rushing through our life.

3.  His level of enthusiasm in any given situation is exactly the same.  A hamburger or a trip to Disneyland causes  him to jump for joy in celebration!

4.  He still believes in Santa Claus.

5.  He has shown us what it feels like to be really and truly unconditionally loved.

6.  His  smiles and belly laughs emanate pure joy.

7.  He has taught us to believe in miracles.

8. He has taught us to run our best race even though we can't see the finish line

9. He has shown us that life is not about waiting for the storm to pass...It's about learning to dance in the rain. ( I don't know who wrote this, but I love it♥)

 10.  I have been waiting to use this next one for awhile.  It was a comment on one of my posts.  It is from a young man named Scott whose brother Daniel (age 36) has Angelman Syndrome.  I thought it was so beautiful and so well said...

 " I think that, along with the "not growing up" part of AS, 

comes a feeling that a memory of something that

 happened years ago could have happened yesterday. 

 Our grandfather passed away about 20 years ago, 

but when my brother
Daniel sees him in photos or old videotapes, 

he most certainly recognizes who Grandpa is. 

 Living a "Groundhog Day" kind of life doesn't only mean 

that today is always the same, 

but the past is never more than a day away either."  

 10.  And last but not least our Scotty has taught us to appreciate the hilarity of a whoopie cushion...

Update:  Scotty is still doing well off his medication.  He still has the same behaviors he has always had...hitting, pinching, banging, throwing and hair pulling...but they are SO MUCH less intense and he is easily redirected.  For example, if he pulls my hair I say, "Oh is mommy's hair soft?  Does it smell good I just washed it?"  He will giggle, smell my hair and go about his business.  Today he stood in front of a basket of toys and put his hand out like he was going to push it off.  I gave him the tiniest head nod to say no and he smiled at me and walked away. He also picked up a DVD with the intention to throw it but instead he laid it gently on the floor instead...what a character!

♥Keep the prayers coming♥

 

This App is called Touch & Say.

Scotty loves it.

 It repeats back sounds and words in a silly voice.

Scotty loves it...AND IT IS FREE!

Expecting/Demanding Miracles

"So I say to you, ask, and it will be given to you; 

seek, and you will find; knock, and it will be opened to you.

Luke 11:9

...So I am asking...I am seeking...and I am knocking! We are going to need all the prayers we can get as we have made the very scary decision to take Scotty off all his behavior medications and see what happens. He has been on a long list of medications over the last 14 years, many of which have had side effects that are much worse than the behaviors themselves.  Currently he was experiencing seven of the severe side effects listed for his current medication Serequel XR: aggressiveness, agitation, exaggerated happiness, restlessness, tremor, trouble walking, uncontrollable arm and leg movement and twitching of face and tongue.

It is said that a picture is worth a thousand words and I am too exhausted and too befuddled to string together enough words to constitute a coherent blog post this week.  Instead I will let the following pictures and videos speak for themselves.

14 Days Ago

Began the process of weaning Scotty off medication.

His reign of terror begins...

Yes that is a giant hole in my wall...

He was so exhausted that he covered himself up with his weighted
blanket and promptly fell asleep.
(This is no easy task because it weighs at least 25 pounds)

9 Days Ago

Medication decreased by half

This lasted about 2 hours.

What I didn't capture was him Incredible "Hulking"
the furniture onto the lawn...
Heavy wrought iron furniture hurled
through the air with super human strength.
Notice how he looks right at me each time...stinker!
Quite the spectacle.

As I sat in my front yard holding ice on my bruised nose and watched horrified as Scotty lost complete control of his senses for all the world to see... I realized I was completely helpless to stop this without getting injured again.  It was in that moment my prayers changed from the usually wimpy ones that always start out with, " Dear God, If you're not too busy... or... Dear God, I know my problems are smaller than most but if it is not too much trouble...or my personal favorite...I know in the big picture my problems are insignificant but..." changed to the following very bossy litany of demands.

Dear God,

Take away ALL Scotty's
aggressive and  angry behavior....forever.

Make him compliant and happy and easily satisfied.
Enable him to communicate his needs and wants appropriately.
Enable him to take care of his own basic needs.
Put a smile on his face and joy in his heart.
Grant him sleep.
Grant him contentment.
Grant him speech.

Let him embrace and welcome everyone who wants to

help him and take care of him.
I want a miracle

TODAY!

In Your name I pray

Amen

♥

Yes, I spoke to God in SHOUTY capitals and I am not proud of that, but I was a desperate mom demanding a miracle for my son...he needed it...we all needed it.

5 Days Ago

Medication stopped

Uneaten lunch...never a good sign.

Followed by 24 hours of throwing up. 

And insomnia that resulted in three consecutive all-nighters.
We don't know if this was withdrawl or a virus.

Now

No medication

His he is calm and compliant and he is
happy...so, so, so happy!

An almost eerie Twilight Zonesque sense of 

peace has settled over  the Baston household.

We would appreciate all prayers
(bossy or otherwise) directed towards this boy
as his body and spirit heal from all
he has been through.
Pray that happy Scotty is here to stay.

God sends me a message everyday. 
 Here was my message for today!

On this day of your life, Joanne, we believe God wants you to know ... that you only need to Ask.

God is waiting for your Asking, waiting to reach out to you.

...And ask I will!

Philippians 4:6-7
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Read more at Buzzle: http://www.buzzle.com/articles/good-bible-verses.html

Philippians 4:6-7
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Read more at Buzzle: http://www.buzzle.com/articles/good-bible-verses.html

The Dot Dot Dot...

Grammatically speaking, dot dot dot, is called an ellipsis and it is defined as an intentional omission of a word or a sentence, and it can also be used to indicate an unfinished thought or, at the end of a sentence, a trailing off into silence...

My lovely daughters, who so lovingly call attention to my many flaws both the obvious and the not so obvious, are quick to point out my misuse and overuse of the ellipsis in my blog posts.

Accurate...but I have my reasons.

My brain has become programmed to function, to think and to speak the language of the dot dot dot.

My days are full of interrupted sentences, uncompleted tasks, and unfinished thoughts that trail off into realm of the dot dot dot.  The obstacle that obstructs my ability to complete a sentence, a task, or a thought is this sweet face.

Every sentence I speak is interrupted by a yell, every task I begin comes to a grinding halt, and every thought I have is erased as I...

I know there is a world where people are able to have conversations with one another without the sound of screaming in the background and speak in complete sentences.  It is a place where dishwashers can be emptied in five minutes and two loads of laundry take two hours instead of two days.

It is a wondrous and enchanting place where people can finish an entire meal without getting up from the table and bathroom doors actually provide the user with privacy. (Personally I think this one is a little far-fetched to be believed)

I have read about this magical place in books...I even know a few people who live there.  Sadly, it is a place I will most likely never get to live, but will merely be an occasional visitor.

But that is okay...

Because this is my life...the life God has chosen just for me and I have been blessed to realize that all the good stuff is in the dot dot dots.  There is stillness, there is prayer and with prayer comes clarity.  It is an opportunity to practice hundreds of times a day all the things that God teaches us.

In the dot dot dots, whatever I was doing ceases to be important and all the little tasks I thought I needed to get done seem insignificant and meaningless compared to the calling I have been given by God to take care of this boy.

For we are God’s handiwork, 

created in Christ Jesus to do good works, 

which God prepared in advance for us to do.

Ephesians 2:10

So my blogs, much like my life are filled with endless pauses 

and endless opportunities to do God's work.

It is filled with the dot dot dots.