Sunday, December 30, 2012

Death

Death has an uncanny way of bringing out the best in people.  And, sadly, it also has a way of bringing out the worst.  Fortunately, with my father, his goodness only shined through in his passing.  He became the light that we all needed.  In his last days, only love filled his heart.  Only love was passed on to us.  Only love presented itself in his last moments.  His last hours.  His last minutes.  Love is what he left us with and love is what we hold close to our hearts. 

I envisioned coming home this winter season as a terrible time for me, but it hasn't been as horrible as I imagined.  I think I needed to go away and come home again to fully understand that he never left me.  The physical remainders of him may lurk here, but in reality, the essence and being of him cannot be placed on what is left.  He lives in my heart.  He lives in all of us who loved him.  And, that is such a beautiful thing.

He is never more than a thought away.  Never more than a fleeting glimpse.  Never more than the headlights on a truck or tractor.  Never farther away than that silent touch on my shoulder. 

Always as close as that smile that sometimes greets me in the mirror.  Always as close as the laughter of my mother, my brothers, their children, and mine.  Always in his quips that have now become ours.

Always near.  Always ours.  And always theirs.  He never left and he never will.  He will always live on. 
 

Sunday, November 18, 2012

I Am a Farmer

I am a farmer,
But I am not the typical farmer of my youth.
I do not harvest crops of the earth.
The crops I tend are buried deep within my soul.
They are the water of life,
In which my future depends on.
I cultivate a crop that does not rely on the weather
Of this physical world.
I am a farmer of my future.
When the weeds of despair, anguish, and hurt sprout up,
It is my job to rid my soul of the pain and hurt,
Which will certainly take root if I don't act quickly.
Sometimes, I allow them to flourish.
I spend too much time in their company,
But, my time is not reciprocated.
In the end,
When I am eventually ready to cut myself away from the hurt,
Those crops have taken root,
And, sadly their roots are strong.
Fortunately, also grown deep within me are the means I need
To eradicate them.
I harvest the pain with love.
I harvest the hurt with family.
I banish the unbearable with faith.
The unseen victors that are stronger than any foul weed that comes my way.
Thankfully, the seeds of love have been planted deep within the confines of my being.
I just need a reminder of the machinery I need to overcome the disappointment that creeps my way.
Faith, family, and friends.
The founding fathers that my own father based his life upon have taken root within me,
And no matter how cold the winter,
How sparse the harvest,
And how dim the sun,
Those ideals that matter are bigger and stronger than any adversity that will come my way.

Friday, November 16, 2012

The Glove of Sadness

Sadness, which was once so foreign,
Now fits like a glove.
It has been oiled over the past few years.
It has been molded by disappointment,
Heartache, loss, and death.
My sadness follows me everywhere.
It leaves me naked,
Exposed.
I may wear my heart on my sleeve,
But it is sadness I greet the world with.
It is an unwelcome companion,
A friend thrust upon me without my consent.
The glove I wear has been oiled.
Oiled with the tears I have wiped away.
Oiled with hugs-
Given and received.
Oiled well the last day I held my father's hand.
And oiled every minute of everyday,
Since the news of my fates washed upon me.
I cannot shed this glove.
I cannot escape it.
My responsibility now is to learn to cope,
To live and understand this new journey.
Holding the hands of those who adorn my heart,
Who reach out to pick me up when I fall.
Those whose gloves are as newly formed as mine.
We forage along.
Fortunately, we do not have to walk this road alone.
I find the mate of my glove in those,
Who are also searching
For what I am trying to find.

Sunday, November 11, 2012

The Seeds of Life

The seeds of life,
Are planted upon fertile ground.
Within the fortunate,
They can be found.

The seeds of life,
Weather hail and rain.
In spite of the hardships,
They still remain.

The seeds of life,
Her beauty prevails.
Despite it all,
A deep love unveils.

The seeds of life,
I have seen unfold.
The birth of life,
In death, the untold.

The seeds of life,
Carry us on our way.
The cusp of understanding,
Still years away.

The seeds of life,
I see in my kin.
A love that only be found,
From deep within.

The seeds of life,
Are a bleesed gift.
From the depths of dispar,
In which only love can lift.

Friday, November 9, 2012

The Voice of the Heart

The voice of the heart is one of the first things we hear.  As a child, in our mother's womb, our hearts are one of the first things to develop and not so coincidentally, one of the first things we understand. 

Before we are born, we are lulled to sleep, and find such peace, in our mother's hearts.  The beating of her heart gives us life.  It sends us peace.  It gives us a place in this world. 

Once we are born, we lay on our mother's chest.  We suckle her breast.  We drink the sweet nectar of her bosom.  We hear her heart.  It is the first language we know. 

I remember being a child and snuggling down on my mother's chest.  A day of being bullied, a night of restless sleep, an hour of discomfort, was all laid to rest, on my mother's chest with the beat of her heart completely in sync with mine. 

After losing my dad and watching his last heartbeat, I comprehended that it was the last beat his heart would physically take, but spiritually, his heart had never been stronger.  I have never believed that he "left" us. 

The fact is, his heart beats on in me.  It beats on in my children.  It beats on in my mother.  It beats on in my brothers.  I feel his blood mixed with mine.  It pumps through me.  It sustains me.  We are wonderfully connected.  Before.  Now.  Always. 

Right now, I cannot rely on modern science.  I cannot call him.  I cannot hear him, but that does not mean he's not there.  In a very real way, he has never been closer.  I do not need the mediums this Earth has placed on me.  All I need is a thought.  A prayer.  A conversation that my heart has with his. 

Those are the things that sustain me.  Those are the things that root me.  Those are the things that keep us- he and I, coming home. 

The language of the heart.  The most beautiful and unique language there is. 

Friday, November 2, 2012

A Post Script: The Story of the Butterfly

“A God Wink is … a message of reassurance coming when you most need it: when you’re at a crossroads in your life, and when instability is all around. It might be said, in fact, that coincidences are the best way for God to establish a perpetual presence in your life”.  SQuire Rushnell

Looking back, my life has been full of God Winks.  A chance encounter here, a move there, staying home versus going out.  In thirty-six short years, I have seen how my life is beautifully intertwined with others here on this earth.  The latest God Wink I have experienced has been a decade and a year in the making. 

The prologue is my post, The Story of the Butterfly, the rest is what has happened since my father passed away, less than three months ago. 

The two weeks I was home after my dad passed away, I longed to see a Monarch. I searched for them, but I didn’t see one; that is, until the last day before I left for Arizona. The afternoon before I flew home, my mom and I drove out to the cemetery to visit my dad. 

We spent about an hour walking around, talking, and finding family and friends we love who were also buried there. We talked, laughed, and wondered about the fates of those we did not know. The time finally arrived when we had seen every grave and honored those whom we loved and those we did not.  We made our way back to the car, buckled up and set off on our new journey-as a family without our patriarch. 

I happened to glance down, probably to take off my shoes (those of you who know me understand that's the first thing I do when I get into a car), but I was alerted to look outside by my mom saying, as she drove the car out of the cemetery, “Look Sarah! There’s a butterfly!”
 
Sure enough, there was a Monarch butterfly that flew right past our front windshield. We drove home that afternoon, traveling the same path that we had traveled to lay my father to rest, albeit with a bit of peace in our hearts this time around.  I absolutely believe that God's angels sent that beautiful creature to us to remind us that He is watching over us during our times of joy, but also during our times of need.
 
Later that night, I sat in my dad’s chair a gazed at the garden of bird feeders he had erected.  I  watched a Monarch flutter back and forth past the picture window he loved to look out. I got the message loud and clear; my dad would never leave me.
 
The next morning, I flew home to Phoenix.  I honestly did not expect to see another butterfly this season, but as fate would have it, I have seen more this year than I ever had before. 

Since coming home, there have been a few times that I’ve seen a Monarch just when I needed it most. The first time it happened was a normal Sunday afternoon.  Tate and I were driving home from getting groceries in Doug's truck.  Normally, I would take my car, but on this occasion, we had just come home from church and it was easier to drive the vehicle we were in.  I turned the corner to my home when all of a sudden, a song struck a chord in my heart.  I was listening to E Street Radio, and although, I love Springsteen, there are a few songs I am not that familiar with.  I'm not sure at what point I realized the words of the song, but I looked down and saw that the title of the song was, My Father’s House. As tears filled my eyes, I glanced up, and right there, flying past the windshield of the car was a Monarch. 
 
A few weekends ago, our family went for an early morning walk.  As we turned the corner to the park, Doug said, "Sarah!  Look at this!"  When I glanced down, there it was, a Monarch.  Sitting.  Waiting.  Peaceful.  Just for me.  I was enthralled.  I placed my hand on the ground and it allowed me to cradle it in my palm.  It fluttered its wings, laid still, and repeated the entire scenario.  I was even fortunate enough to take pictures.  I realized that even on insignificant days, the most amazing things can happen. 
 

This past weekend, Doug and I were at a wedding and the reception was held outside. We were talking to the father-of-the-bride’s mother. She has lost her parents and husband. I was talking about my dad and how hard it is to lose someone you love so much. Almost instantly, after I finished talking about him, there it was, a Monarch. It fluttered right past us. It stayed just long enough to warm my soul and fill me with love. We did not see another one all afternoon.

And, back home, "butterfly things" were happening, too.  Every year, my father's high school has a ceremony to pay tribute to those who have died.  Families have a chance to purchase a brick with their loved ones name engraved on it.  My mom heard about this and absolutely wanted to participate.  About a week before the ceremony, my mom found out that during the ceremony there would be a Monarch butterfly release.  She called me to share the news and my jaw literally dropped. I was speechless.  Certainly this was not a coincidence.

And then, one of the biggest God Winks of my life happened on Halloween.  That evening, I met Gail;it was a very chance encounter to say the least.  My sons had already trick-or-treated at her home, and I was a bit behind them, but I happened to see a sign that read, something like, "Monarch Butterfly Habitat".  Of course, I had to know more!
 
It turns out, Gail Morris, the owner of the home, is a conservationist.  Her passion is bringing back the Monarch population in the Southwest.  She does amazing work and I admire her.  Now, I'm sure she was a bit confused as I rang her doorbell and told her that I saw her sign and I needed to know more.  She was more than accommodating.  She answered my questions and gave me her name.  She told me to google a few key words when I got home because there was an article in the newspaper she wanted me to read.  I left with a feeling of enormous love in my heart and a desire to know more.
 
So, we came home, my family and I. One of the first things I did was get on the computer find the article Gail was referring to.  As fate has it, she is one of the most important Monarch butterfly conservationists in Phoenix.  I was so amazed I had trouble sleeping.  Little did she know that my friend, Jane, had sent me her article the day before.  I didn't put two and two together until I got home. I had already read about her work and, of course, I was intrigued! 
 
I called Gail the day after our meeting and she was just as wonderful as I remembered.  She invited Tate and I over to learn how to tag butterflies.  She is starting some milkweed plants for me to grow in my yard so I too can enjoy a backyard full of orange fluttering wings.

Gail emailed me today.  Attached to the email, she sent me a link to her latest blog entry.  She told me that the Mexican, Day of the Dead, coincides with the arrival of the Monarchs migration to Mexico.  In some Mexican cultures, the people believe that each butterfly holds the soul of someone who has passed away.  She also blogged about our chance meeting.  The following is the link to her blog: 
http://monarchsinthedesert.blogspot.com/2012/11/monarch-butterfly-migration-and-day-of.html
 
I believe that God winks in many ways.  Little did I know the significance of one thought, eleven years ago, on that fall night in Iowa, when my family became butterfly harvesters that something amazing would fill our lives for many, many years to come.  The night the butterflies came to town. 
 

  

Friday, October 12, 2012

God's Handiwork

I have done a lot of thinking, reading, and praying lately.  Much of what I have read in these past few months has had to do with God, healing, loss, and grief.  Today, I finished the book, To Heaven and Back, by Dr. Mary Neal.  Earlier this month, my mother-in-law handed me a Guidepost magazine with the story of her near death experience in it.  Of course, after just losing my father, I found her story fascinating, hopeful, and wonderful.  This week, I happened upon a post on Facebook mentioning her.  She appeared on an episode of Katie, which I happened to catch at "just the right time". 

Today, I finished Dr. Neal's book and no sooner had I put down my book, I read a blog by my sweet friend, Kathleen Quinn.  And, today, another piece of my puzzle seemed to fit together. 

This past week for me has been one of deep depression, sadness, and despair.  I have missed my father terribly, struggled with the fact that I am so far away from home, and tried to bandage up the wound that fragile X has left on my heart...just when I thought I had come to terms with living with everything.  Silly me. 

Today, everything came together for me.  That being said, tomorrow is another day, but today, for the first time in a week, I have felt a little sense of peace. 

Many times, even before my profound losses, I have contemplated the circumstances that have led me to where I am today.  I believe that God always knew my path in life.   He sculpted me and weaved me together with love, just as he does with all of his children.  Before I was even born, He placed a gene within me that is invisible to the naked eye, but would profoundly change my life, or perhaps, help me better live my life. 

Years ago, before knowing of my future, God pressed upon my heart the path of becoming a teacher.  He put into place every moment that led me on this journey.  That journey led me away from home and back and away and back once again.  And when I returned home the second time, I was content, happy, and at peace, but little did I know what I was missing.  Then, one summer night, Doug literally bumped back into me. 

The night Doug and I were "reintroduced" was nothing short of a God-Wink.  In a few short months' time, we fell in love, and I made the decision to move to Phoenix.  I had no second guesses, no regrets; as much as I knew I would miss my home, I couldn't move soon enough. 

Fast forward eight years, the birth of two beautiful children, and the diagnosis of fragile X.  Through the pain of that news, I was able to understand the remarkable and unmistakable handiwork of God's plan.  Doug had moved to Phoenix years before running into me.  When we met, he told me he'd move anywhere to be with me, but something (God) was pushing me to come here.  After Trek's diagnosis, so many things were clear to me.  We were in Phoenix for a reason.  We have an amazing pediatrician, who is not only a doctor to my boys, but a friend to both of us.  She listened and loved us every step of our way.  She was the second person I called after knowing, "the truth".  We have a community of fragile X families, right at our fingertips, who are there for us when we don't know where to turn.  We live in a school district which is amazing and I am a teacher in a school with some of the best in the business (how I got the job is another God-Wink).  And, twenty minutes away is a newly formed fragile X clinic that is in its infancy, which we are lucky enough to be a part of!  We have therapists who are like family to us, and neighbors I could not imagine being without.  Not to mention family and friends we have here, in Iowa, and all over the United States. 

And then, the unthinkable happened.  Another loss.  Another forever hurt.  I know that I could not survive without ALL of the wonderful people in my life.  My loves there, my loves here, and my loves in heaven. 

When I think about losing my dad, I also think about how fortunate I am to have had the parents I do.  They cared for me and guided me.  They let me fail and learn the lessons I needed to.  The loved me enough to let me go, knowing that I would always return home again. 

After the emotional turmoil of this week and the little ounce of healing this afternoon, I sat outside and watched the sun setting and told my dad how much I missed him.  At that moment, I felt him press upon my heart and speak to me in words that have no language, "I am here.  I am always here."  And, I didn't feel so alone.  Maybe, given enough time, I will be able to look back on this chapter and understand how beautifully and wonderfully written it is, just for me.  And, for that glimmer of understanding, however fleeting it may be, I am thankful. 

Sunday, September 30, 2012

A Family of Five

A family of five,
In the blink of an eye,
Became a family of four-
In our bittersweet goodbye.

A family of four,
Stood strong and stood tall.
Never leaving each other,
We were there through it all.

A family of four,
Saw our roots reach down deep.
Our love for one another,
A wonderful harvest to reap.

A family of four,
Bid our loved one farewell.
On the wings of an angel,
Entranced in death's unique spell.

A family of four,
Tries to deal with the loss.
To see you again,
A million miles we must cross. 

A family of four,
Left here on this earth.
Wait to see you again,
When we die in rebirth. 

Wednesday, September 26, 2012

Teachers

Our lives are full of teachers.  From the moment we are born, we are inundated with teaching.  We are taught how to behave, how to interact, how to read, how to write, how to figure equations, how to love.  Our teachers may be hard to follow and obscure at times, but they all have the end lesson in sight. 

If we are very fortunate and very lucky, we are surrounded by teachers at the time of death.  Those teachers take on many roles.  They may be the family members we look to for comfort; those who share an understanding that belong to only the few who loved so deeply. 

They may be those who are passing themselves.  Those who understand what we cannot, and offer a peace that only they can provide.  That peace may come in the form of forgiveness, a squeeze of the hand, a smile upon their face, words of comfort that pass any miles placed between, or simply an explanation that needs no clarification.

They may also come from those whose job it is to help us let go, move on, and seek peace and understanding.  Those who choose a profession which many of us shy away from.  Blessed are the souls who day in and day out provide love for the dying, but also for the living.

I have learned that death is not something we do alone.  It is a collaborative effort.  Dying involves those who live, those who die, and those who meet us on the other side.  We are all connected.  Intertwined.  Sewn together to heal, to love, to let go, to live. 

We all live on, here, there, or that somewhere in between. We are never truly gone, and the end is never a punctuation mark.  It's not a question.  It's not a statement.  It just is.  When the end greets me at the end of my sentence, I hope it's met with a smile.  A kiss. A hug.  A laugh. And a tear to remember all of the good times, and a tear to offer hope of all that is left to be.

I hope the beginning of my journey begins the day I say, "goodbye".

Monday, September 24, 2012

Our Loss

We all lost.
A son.
A husband.
A father.
A grandfather.
A brother.
An uncle.
A friend.
We all lost.
And at the same time,
We are trying to hold on.
Hold onto you,
While trying to let go of our pain.
It's an interesting paradox.
To smile through the tears.
Laugh in spite of the pain.
Trying to navigate our new world,
Without the map of you.
Some days, that compass is clear-
Like a sailor on a known voyage,
Stars lighting the way.
And other days, it's a dark, cloud filled sky.
Even when the sun does shine,
It doesn't seem as bright.
The hole in my world is too deep.
Thank God for the love that remains.
The love you left us with.
It burns an eternal flame,
And will shine upon us-
For the rest of our days.

Friday, September 14, 2012

A Meeting Amongst the Stars

Tonight as I lay me down to sleep,
And I pray the Lord my soul to keep-
I hold tight the wish I wish with all of my might,
To see you in my dreams. 

As the twilight of sleep begins to grace my thoughts,
I want nothing more than to meet you amongst the stars.
And dance a dance,
Entwined in each other's open arms. 

No words need to be spoken.
To dance cheek to cheek-
And heart to heart,
Would fill me with enough happiness to make my world go 'round.

To just be near you once again.
To kiss you upon your head and hold your hand.
Shed one tear, or one hundred,
Would possibly give me just enough strength to get through tomorrow.

So, if I am lucky-
Tonight might be the night that God grants me the peace of forgetting,
That moments like this may not exist here on earth,
But, if I am fortunate, I will have my meeting amongst the stars. 

Saturday, September 8, 2012

My Father

My father taught me many lessons growing up.  He taught me the definition of hard work, by showing me an example of what that would look like.  He taught me what faith meant, by attending church every week, but even more importantly, by living what the Bible taught him.

My father taught me what loyalty meant by never forsaking those who sought solace in his friendship, despite the circumstances.  My father taught me honesty when he forced the truth out of me and my pain was not met with a punishment, but rather disappointment and sadness, and the desire to never feel make him or myself feel that way again. 

My father taught me character.  He rarely spoke ill of anyone he knew and taught me to try and do the same-no matter how hard that may be.  My father showed me how to view the world as one people, to not judge or discriminate.  The only thing that mattered to him was if you had a good heart and good intentions.

My father taught me how try and live the best life that has been laid out before me.  My father showed me how to hurt without complaining, how to believe without reservation, how to love without boundaries, and how to form friendships regardless of differences.

My father taught me many, many lessons in his life, but I know he taught me some of the most important things I will ever learn, in how he died.  My father died with grace.  My father died with courage.  My father died with honor.  My father died surrounded by love.  My father died knowing he lived his life to the fullest that was granted to him.  My father died by giving gifts until his last moments.  My father died comforted by those of us whom adored him, loved him, respected him, and hurt to see him go. 

But, go he did.  And, go he must.  My father made those choices on his own terms.  He gave me the gift of not being as scared to die.  I believe that it will all be okay and one day he will come to greet me with the same love that I had when I was lucky enough to be there to help send him home.

The Paradigm

Today I pondered an interesting paradigm.  What if I were given the choice of which one of my lives I would like to live?  All things being equal, up until the point, two and a half years ago when everything changed.  Which life would I choose?  Which one would I claim as my own?  Which path would I follow?

Would I choose the girl who knew a minimum amount of pain?  Who lived her life in a bubble she thought nothing bad could penetrate?  Not that she didn't worry, she just believed that things like: cancer, genetic mutations, tumors, and heartbreak didn't belong to her.  They didn't fit into the mold she had fitted for her life. 

Would I choose the girl who shied away from others' pain?  Too afraid she'd say the wrong thing and make things worse.  Or more terrible yet, say nothing at all.  The girl who was too naive to understand her actions then would impact her life for all time, with regret and sorrow inching its way into her soul. 

Or, would I choose the girl who suffers?  The girl who understands what heartache truly means.  The girl who fights the injustices in her life; trying to understand them, to live with them, to cope, and to ultimately try to make a difference. 

Would I choose the girl who has become closer to God despite of her hardships?  Would I choose the girl whom understands what it's like to lose big?  But, despite her losses, sees more sunshine than she saw in the thirty-three years before. 

Would I choose the girl who comprehends what love really is?  Because, so many times, love is not pretty.  It's not wrapped up in a perfect little box with impeccable paper you're too afraid to rip.  Could I understand the girl who innately knows that the wrapping paper of your life is meant to be torn, edgy, and impossible to tape up, because, perhaps, that is what makes you a better person? 

Could I know, deep down, that sometimes bad things do happen to good people?  And, that, perhaps, the concepts of bad and good have nothing to do with your path in life?  That this journey we are on is ultimately meant to teach us the things we really need to learn.  We have the choice to be bitter about what happens to us, or to embrace them, full-on with wide-open arms and a heart full of love, determination, and hope. 

So, which one would I pick?  I miss the former, but in honesty, I believe I would choose the latter.  She is the one I need to know.  The one I need to be.  She lives the life I need to follow.  For better or worse, we are in this together, neither of us walk this path alone.

Wednesday, September 5, 2012

There Is...

There is a knot in my throat
That makes it impossible to breathe.

There is a hole in my heart
Which makes it difficult to live.

There is a loss for words
That makes it hard to articulate.

There is a sorrow
That pools itself in my dreams.

There is a nagging doubt
Which I brush aside.

There is a desire to trudge on
That surpasses the pain.

There is a fortunate smile
Which passes my lips.

There is a sense of peace
That accompanies the hurt.

There is a need to carry on
Which nags at me.

There is a life that's waiting to be lived
That begs for my attention.


Letting Go

I have lived the last few years of my life afraid of the time I must begin to let go.  I have held on with every ounce of strength I had.  Unable or unwilling to face the day that it became clear; the time is now, and the point of no return has up and passed me by. 

Honestly, I fear the girl I will meet in this next life.  The person who will clothe me in my new beginnings.  The one who will comfort me in my new life.  What does she know about me?  Granted, we spent thirty-some very wonderful years with each other, but all things considered, we are strangers now. 

That girl of yesteryear knows nothing of the pain I have endured and continue to endure almost every moment I wake and breathe.  She was a child of fortune.  Death, misfortune, discomfort, disappointment, and heartbreak belonged to someone else.  Those demons did not come knocking at her doorstep. 

And now, those same demons need not knock at my door, because that door was broken down a long time ago.  That door became a moot point around the time things started going south.  The pain and the bad news seeped through the windows and created a mile-high barrier between this world and that which remained. 

But, I hope that girl that lurks beyond the disaster can still be a remnant of the person she once was.  Loving, caring, anxious, and afraid (you've got to take the good with the bad).  I hope that in this scope and sequence of life I do not lose myself too much.   Because, to me, that would be the ultimate tragedy.  To in one fell swoop cut off the head that rested assuredly upon my shoulders for many years.  To leave her gasping for air and searching for a piece of familiar to cling to. 

I do not want to let go of her.  I would love to introduce her to my new self.  The person of before and the person of now.  Maybe once we can do that we can begin to let go of who we think we should be and start becoming who we are meant to be.  And, perhaps, we can, together, meet the person of tomorrow, head-on; to welcome her into this life we are blessed to call, "ours." 

Thursday, August 30, 2012

Canvas

What if for a moment,
We could imagine our lives as a painting?
The canvas beautifully designed by
The Master Artist.
Each moment crafted,
Especially for us.
But, the canvas our lives are-
Painted upon,
Is continually changing.
Evolving.
One layer upon the next.
And, maybe when we die,
At one miraculous moment-
The layers of the canvas, 
Of our lives-
Begin to peel away,
And we are awash-
With the beauty of God's handiwork.
The paint takes life-
It surrounds us,
And at once-
We are able to see,
The entire picture.
It is enveloping-
The whole canvas,
Painted-
Just perfectly for us.
What a moment that will be.
When everything makes sense.
And our questions are answered,
And we can see-
The vision the Painter had in mind,
Our entire lives.
When every moment suddenly fits,
And a knowledge that surpasses-
All understanding
Is beautifully presented to us.

Tuesday, August 28, 2012

They Say

They say, time will make this easier. 
They say, time will heal my wounds.
But, I'm not so sure I believe them.
For me, life has only become harder-
The farther away from my father's passing I go.
The longer I travel this lonesome highway,
Is one minute, one hour, one day, one week-
I stray away from him.
From the moments he was alive.
Every mile I trek down this road,
Is another on the map of being distanced from-
His smile.
His voice.
His laughter.
His embrace.
His being
What I wouldn't give for a release from this pain.
But, if it hurting less-
Means forgetting him more,
I will pack up this pain-
And store it someplace safe. 
I will gladly carry it with me,
For the rest of my years-
Because to forget is incomprehensible.
But, I feel it happening-
Now, even this soon. 
I struggle to remember every ounce,
Of who he was-
While, at the same time,
I grapple with the pain that led me here.

Friday, August 24, 2012

Silver Linings

I wonder where the term, "silver linings" originated.  Maybe from a seamstress searching for a piece of thread to make things look nice.  Nowadays, the term is commonplace, and it makes me think about where I can find silver linings. 

I have been forced to find silver linings in the patchwork of life.  Each part of me is continually being stitched together by the Great Weaver, and I have no control.  Just when I think the thread is pulled tight, out come the scissors, but it's without the satisfaction of a clean break. 

It is more like a tear.  Life has torn my heart to shreds.  It has broken me down, built me up, and broken me down again.  And, sadly, I understand this is not the end of the construction work.

Jesus was a master carpenter.  He took pieces of scrap and built them into something beautiful.  Maybe something wonderful will eventually be built from this ugliness.  I am willing to stick it out.  I am a loyal apprentice. 

I try not to question life.  I try to be happy with the joy that is given to me and I try to make peace with the sorrow.  But, I am only human, and sometimes, that's very hard.  I wonder, and I ponder, and I over think the simplest of things. 

But, in the meantime, I try to love more than hate, smile more than cry, rejoice more than grieve, and live more than die. 

All I can do is try. 

Etchings

There are certain dates that define you; I have written about them before.  The date that you are born, becomes your birthday.  The date you are married becomes your wedding date.  There is also the date you were baptized, confirmed, met your soul mate, moved away from home, and if you're lucky, had your children.  There are also those dates that etch themselves into your heart; the date you find out, "the truth", and the day your parent passes away. 

This August 6th isn't the first one I have lived.  I've done it thirty-five times before.  But, this one is profound.  This date that's passed, and every week-long milestone I've had since then means something to me.  That date on my calendar will never be mistaken for just another day on the clock for me.  August 6th, is the day I lost my father. 

Never again will I see the passing of summer as just another season in my book of life.  Never again will I envision it as the starting of a school year, new beginnings, and pictures on the front steps.  I will never see August again without seeing my dad.

I was thinking recently about the hundreds of people who paid their respects to my father.  And I mean, hundreds.  When I thought about it, I was so proud.  Proud of the man he was and the legacy he built for us.  To think that that many people spent hours in line to hug us, see him, and be a part of his lasting love touches me deeply.  And, to fully understand how lucky I am to have had him as my father, makes me weep tears of pride and pain. 

No matter how hard we try, I don't think those of us here on earth ever find our last goodbyes.  We will always long for one more minute, one more hour, one more day, one more, "I love you", one more chance.  They are hidden and built deep within this lifetime and the next. 

When I think of my dad, my first reaction is to smile.  I truly believe that he is spending eternity in heaven.  But, when I think of me and those of us left here to grieve, my first reaction is to stifle the tears, the pain, the longing, the hurt, because this is the kind of hurt that drives people to their knees. 

And, then, on my knees, I find myself...praying.  Praying for God to help me be a better person, mother, teacher, friend, daughter, sister, wife, and all of the other titles I hold.  I just want to be the kind of person who lives her life in a lovely way. 

And, when my bell tolls, I hope it rings loud and clear upon heaven's gates.  For the place I want to go is the place my father saw when he passed.  A place that is awesome and miraculous and full of life.  One day, I hope to go home.

Friday, August 17, 2012

Heels Dug In

I envision those old-time movies, with the woman on the farmstead, dragging her heels in and refusing to leave, and I feel like her.  There have been many times this past year where I have planted my heels firmly in the ground and the world just drug me on with it; permission or not.

The first time I felt like this was after finding out about Trek.  Fragile X made me stick my cowgirl boots, spears and all, into that Arizona ground and not want to go on, but the funny thing about life is, you just have no choice, rocky desert, desolate ground, and all.  You just have to do it.  You have to live, "this life."

So, I did it.  I gave in.  I read.  I researched.  I learned all about genetics and how I "did this" to him.  I didn't want to, but I did.  And, somewhere along my path, I embraced it.  I embraced Fragile X and everything it had to offer; the love, the companionship, my husband, my sons, and all who were on this journey with me.  I did it reluctantly, but I am so happy I did, because they gave me hope. 

I feel the same way about cancer.  A friend of mine wrote recently that she wants to punch "cancer in the face."  Yep, me, too. But, then what?  Once I get my anger out, where can I possibly go from there?  Sink deeper into this hole, or find the tools to dig my way out?

 I choose digging.  I choose crawling.  I choose making a new road with tools I had no clue existed and ones I may need to invent along the way.  Because, the other option I have, is simply not an option. 

I could let the heaviness of my new heart weigh me down, but for how long?  A minute?  An hour?  Days?  Weeks? Years?  A lifetime?  Nope, not for me. Cancer had its time.  It had two years of my life and my family's life and my father's life.  I will NOT let it write our future. I will not let it taint my father's legacy.  Because, cancer wasn't all he was.  He was love.  He was laughter.  He was hope, and pride, and honesty, and fairness, and faith.  That was him. 

So, tomorrow I must go.  I must face this new world without the comfort of my mother, this farm, his clothes, and sleeping in his bed.  I must go.  I am scared as all-get-out to do this.  I don't know how that little plane can carry my grief, but I guess I must give it a try.  It's a big ol' bag to carry.  It's the weight of the world resting on my little shoulders.  And, it is too heavy. 

People say it gets easier.  I'd like to know when, because everyday to me is harder.  Harder to imagine.  Harder to smile.  Harder to laugh and do the mudane things of life.  Life is hard, I understand this; I just wish it would get a little bit easier.  In time, I'm sure it will. 

Maybe a new perspective is all I need.  One from above.  Close to him. And the next time I set my eyes upon this fertile land, it will be with a different point of view.  One that has time on its side and a little distance from the hurt.

And, So I Write

And, so I write.
I let the pen and the paper,
And the swift strokes of the keyboard
Take away some of the hurt.

That's why I write.
To let it go.
To free the anguish
From my soul.

And, so I write.
To ease what's been bottled up.
In places,
I don't care to go.

But, it's easier,
Than saying those words
Out loud.

I hurt.
We all do.
But, some hurts
Are forever.

And, to my
"Forever Hurts"
This is a place for you
To live.
Because I cannot keep you.
You'll crush me if I do.
But, live you must.
And, live with you
I have no choice.

So, here it is.
A window into my heart,
My hurt.
To peer into my new world.

Pen to paper.
Fingers to keys.
A sweet release,
To go help me go on.

And, so I write.

You

You were there.
Across miles.
Only a phone call away.

You were there.
In that emptiness of home.
I felt you.

You were there.
Your blood running
Thick with mine.

You were there.
Soaring in the heavens.
With me on my way home.

You were there.
Whispering in his ear.
Reminding him I was coming.

You were there.
When I couldn't be.
My beacon of hope.

You were there.
Welcoming me home.
I will never forget.

You were there.
I owe you my last goodbye.

I loved you before,
But that could never compare
To how I love you now.

You were there.
You.
Thank you.

In Time

Another day rises,
And another sun sets.
Summer in the plains,
Tips her bonnet and bids
Farewell.

She takes with her,
The life and memories-
Of everything I knew.
And she leaves me with-
The death of fall.

From now,
And for always-
My life will not be measured
By seasons.

It will be measured-
In time.
The time before,
And the time after.

Time before holds everything
That was familiar.
Holidays, phone calls.
Just because.

Time after is just beginning.
Time after is something-
I cannot quite wrap my head around.
The ticking of my clock starts now.

At times she is slow.
And others she is swift.
But, she cannot do the one
Thing I wish she could.

She cannot rewind.
She cannot start over.
There's only now.
There's only tomorrow.

So, strap those boots on tight.
Double-knot them,
And get out into the murky water-
That is your now.

Trudge on.
Follow your heart,
You'll find your way.

Don your hat of fall,
But,
Don't tuck it down so far,
That you cannot see the sun.
It's there.

Have the faith to feel him on your shoulder.
To warm your face.
Touch your heart.
Soothe your soul.

You'll get to where you're going.
In time.

Tuesday, August 14, 2012

The Story of the Butterfly

My grandfather passed away in the fall of 2001, ten days before September 11th rocked our nation.  September in Iowa marks the birth of fall, of  harvest, and the end of summer days.  It is also the season of the Monarch butterfly. 

This particular fall my grandfather passed away was, I'm sure, like so many before; the only difference was this fall was tainted with sadness.  The night of my grandfather's visitation, our family decided to gather up Monarch butterflies to release at his funeral.  We were harvesters on a mission, and when all was said and done, we had two plastic bins full of those amazing creatures.

The next morning, we released them at the end of my grandfather's funeral.  It was nothing short of breathtaking.  To see them fly away, to whatever home they were going to, was very poignant for all of us. 

The Monarch butterfly has become a symbol of love in my family.  At my wedding, instead of throwing birdseed or blowing bubbles, we released Monarch butterflies and it was incredible.  My cousin recently did the same.  For the last eleven years every time we see a Monarch, we remember our papa, smile, and quip that he was coming for a visit. 

This particular summer, my family hasn't seen many Monarchs in Iowa, and living in Arizona, my sightings are even more rare.  But, in the hours leading up to the time my father's soul left this earth, there was a Monarch butterfly who would flutter outside of his window at the Hospice House.  Each time my family would see it, they would share with my dad that his father was checking on him to see how he was doing.

The last Monarch my family saw that morning flew away just as I was arriving to be at my father's side.  It was almost as if it was waiting for the last piece of our family puzzle to be put in place. 

After my dad passed away, I was trying to explain to my niece, Reese, the significance of the Monarch to us.  For the rest of her life, I will remind her to keep looking for the butterflies, they will find her when she least expects it.  They will find all of us, just when we need it most.

Lessons Learned

I never realized before enduring my father's death, that it's okay to laugh, it's okay to smile, and it's okay to crack a joke, even as you are embracing a heartache.  Before the unspeakable happened to my family, I imagined those who walked in my shoes before me as being sullen and sad every single second of their lives-until they reached that point where they could learn to live again. 

Not every moment since my dad's passing has been full of sorrow, but when those moments hit, they are like a series of mini-earthquakes in the core of my being.  They rock what is already soggy ground and cause me to rebuild again, from the ground up.  Sometimes this happens innumerable times a day.

And how do I rebuild?  I remind myself of how much I am loved and how many I have to love.  And I smile.  And I laugh.  And I make corny, semi-witty jokes.  Because that is what my father would have wanted us to do; keep our noses to the ground, push on, and live our lives in such a way that one day we will meet again; with the assurance and knowledge that those hands we loved so much will welcome us into heaven.  When I imagine that moment, it makes me so happy. 

Monday, August 13, 2012

Grief

I am wrapped in a blanket of grief.
It is suffocating me,
And dragging me down-
With its intensity.

This is what I was afraid of.
And, my instincts were right-
I had a reason to be terrified,
Being swaddled in this grief is horrible.

My soul feels haunted,
To cry out in anguish is just not good enough-
To chase this beast away.

I run from my invisible demons,
But, eventually they catch me-
And sweep my feet out from under me,
Causing me to crash to the ground-
While they pour salt in my wounds. 

Little by little I am sure I am-
Unraveling pieces of this blanket of grief.
But, it will never be soon enough-
I want this blanket to be threadbare.
And, even then, it will not be enough to satisfy me.

Sunday, August 12, 2012

When Thank You Isn't Enough

When thank you isn't enough,
What do you give?
You try to say with words,
Just what your heart feels,
But, it isn't the same.

When thank you isn't enough,
Where do you search-
For the love that you are feeling,
There are no words.

When thank you isn't enough,
You try to show-
Just how much they mean to you,
When there is no where else to go.

When thank you isn't enough,
You depend on God to find-
Just the right path for you,
To show them they are the
Ties that bind.

When thank you isn't enough,
You pray that they will know-
Just how much they mean to you,
They are the place that you must go.

Friendships

Friendhips are not built in a day.
They are watered, tended to, and cultivated-
Over years.
True friendships,
Span miles,
And phone calls-
And recognition,
With a simple touch of the heart-
Or a song in their voice.
Friendships make you who you are,
And carry you when the going gets tough.
True friendships,
Hold strong.
They urge you to believe,
Just how loved you are.
When you cannot see it with-
Your own eyes. 
They will never let you forget-
True friendships,
Will love you through-
The thick and the thin,
Laughter and tears.
Hope and heartache.
They will love you today,
They loved you yesterday,
And they will love you tomorrow.
They will love you,
Always.

Friday, August 10, 2012

I Hurt

I hurt.
I am sad.
Will this pain ever
Go away?

I sleep in his bed,
I wear his clothes-
Just to smell him.

I ask if it's okay,
To remember him.
And, it is-
With time.

I wear his watch,
Batteries gone-
Time does not matter to me,
It's only him I want.

I miss him,
I miss our life.
How will this emptiness
Ever be replaced?

It does not seem fair,
Cancer tagged out the fighter
But he didn't see it coming. 

The tears I shed,
Just will never be enough-
To fill an empty well.

I prayed for minutes,
And hours I was given,

But time is still all I want.

Dana

Dana, how could I ever express what you mean to us?  For this love, there are no words.  You are my brother's wife, my parents' daughter, my sister. 

Because Josh loved you, we were enamored with you; before you set foot inside of our home-you had a place there, etched out by someone up above.  I love to think God had a home for you, and we welcomed you with wide-open arms.

I love you.  I hope I have told you a million times how wonderful you are.  And, if I forget one time, I hope it's the last. 

Take care of his heart, as you have done mine.  I have no doubt you will.  You held my hand and my heart in one fell-swoop. I am so sorry it had to be this way, but at the same time, I couldn't imagine you not being there. 

We will love you forever.  My sweet sister by choice.  I adore you.

xoxo,

S

Sisters By Choice

I always prayed for a sister.  I remember being a child and longing for someone to have the same genetic make-up as me.  I was missing that huge X chromosome from my life.  I begged my parents to adopt a girl so I wasn't alone.  That plea fell on deaf ears; for a reason. 

The day Kati came into my life, I rejoiced.  I loved her from the get-go.  Fast car driving, hell-on-wheels, and all.  We all did.  She was such a spark in our life, she was what we were missing.  My mother embraced her, my father said, "Hello, Kati."  And that, was that.  She did not need our approval, but she had it.

She has been with us through hurt and healing.  Smiles and pain.  She's been there through all of that.  The days leading up to the point when I lost my dad, Kati was a light.  She comforted me across miles and then again across a simple touch of the hand.  Kati was there and I would not want it any other way. 

She was one of the ones I seeked out during my father's last days, and if I'm honest, his last breaths.  She never forsake me. She was always there. 

And, now, more than ever, I leave her in the care of my brother's heart.   She's the one who will comfort him, hold him, love him, and carry him on-when miles separate us from each other.

God sent us her.  My sweet, Kati-Mae...He knew what he was doing when he forgot to bless me with a sister by blood.  He gave me a sister that is so much deeper than that, my sister by choice, my sister forever, my sister whom I love-I couldn't imagine it any other way. 

I love you, Kate. 

xoxo,

S

Goodbye

Goodbye,
Farewell-
Until we meet again.

Adios,
Arrivederci-
See you later.

So long,
After a while-
Go in peace.

Goodbye,
Ten-Four, Good Buddy-
Over and out.

We're gone.

xoxo

Thursday, August 9, 2012

I Fell In Love

I fell in love tonight,
A hundred times-
Plus one.

I fell in love with my father,
My mother,
And their sons.

I fell in love with strangers,
Each one of them became-
Those I have a kindredship with,
My father still remains.

I fell in love tonight,
Hugs, tears, and kisses, too.
I carry the sweet perfume of those,
Who bid farewell to you.

I fell in love tonight,
In the darkest of my days.
They will help me through,
My forever hurt-
You wouldn't want it any other way.

I fell in love tonight,
You paved this path with care.
Your legacy lives on with us-
You will forever be there.

The Gift

Cancer is a fickle gift.  It is an invisible monster that lurks in places you cannot see; its tentacles are far reaching, and once they take hold it is nearly impossible to stop.

Cancer will rip your heart out and leave you dropped on your knees begging for mercy.  And, this is coming from someone who loved the fighter in the battle, not the warrior himself.  But, cancer does not always have to win; even in death we can beat it.

When I have the courage, I can see cancer as a gift.  It allowed me to say goodbye to my dad for two years.  In those two years, I grew more in love with my father.  I saw how strong he really was, from the inside out.  He may have not always been strong physically, but he was immensely strong in spirit, in soul, in character, in love and in life. 

Cancer gave him permission to express how much he loved us, and us the gift of showing him exactly how much we loved him.  It became okay to hug more, linger longer, hold hands, and kiss on foreheads...cancer gave that to us. 

Cancer will humble you.  It will force you to look beyond what you see with your eyes.  It forces you to seek what's in your heart and to say those words that sometimes get stuck on the tip of your tongue.

What I witnessed tonight at my father's visitation was nothing less than the purest form of love.  Those who loved him, my mother, my brothers, my family, and I, waited for hours just to help bid him farewell.  He deserved nothing less than that, but he also earned that love; without even trying to. 

So, goodbye, Dad...I hope that you are dancing in the heavens and looking down on what transpired tonight.  You are so loved by so many. 

Until we meet again...thank you for the memories and thank you for the gift of having the honor to love you. 

Are You Angry?

When my father's cancer became serious, people asked him, "Are you angry?"  "Angry about what," my father asked.  "Angry that this has happened to you!  How could such a bad thing happen to such a good person?" they implored.  The answer my father gave them has stuck with me since I heard he'd uttered these words, "Why?  Why would I be angry? (He was so confused) God has given me a good life.  I have a wonderful wife and three beautiful children.  He has blessed me with grandchildren I adore. I have had good parents, a brother and sister, nieces and nephews.  What more could I want?"  Even though he died too young, he lived every day to the fullest.  Only in death could my father comfort those of us who remain.  I admire him.  I adore him.  I love him so much.  Some of his last words speak volumes.  Those of us who are left, would be blessed to listen to that sweet, sweet man.  God broke the mold when he made my father.  I miss him already and this is only the beginning of my journey.

Wednesday, August 8, 2012

In The Quiet Moments

In the quiet moments,
I remember you.
I glance over my shoulder,
Expecting to see you.

In the quiet moments,
I imagine you here.
Laughing, loving...
I search for you-
In the quiet moments.

In the quiet moments,
I hurt and wonder how I will go on.
I long for you,
In the quiet moments.

In the quiet moments,
You are the loudest.
When darkness blankets this prairie,
I feel alone,
Waiting for the sun to rise again,
For loudness to wake me from my reprieve.
In the quiet moments.

One day, I will wish for the quiet moments,
When the noise of you being gone is just too much.
Because being with you was never quiet,
It was filled with so much life.

From now until forever,
My life will be too quiet.
I will miss you,
Always-
In every moment.
Especially the quiet ones.

Tuesday, August 7, 2012

I Hear Him

I hear him.

I hear his laughter,
I hear his song.
I hear his, "I love you,"
Even though he's gone.

I hear him.

I hear his footsteps,
I hear his voice.
I hear his teachings,
I have no choice.

I hear him.

I hear him in the creek,
Across the floor.
Even as,
He will not walk those steps-
Like before.

I hear him.

I hear him in an opening
Of the kitchen door.
I hear him as a tractor
In the distance,
Reaches out for more.

I hear him.

I hear him in the stream,
That runs outside our home.
I hear him in the pasture,
Where his cattle used to roam.

I hear him.

I hear him-
As he so patiently waits,
To greet us at
Heaven's Pearly Gates.

I hear him.

I See Him

I see him everywhere,
Even though he's gone.
Eyes wide open,
And eyes closed shut-
I see him.
In this haze of grief,
I see him-
He lives.
I see him at every turn I make.
I see him in the
Knickknacks that surrounded him,
The "things" he loved.
I see him in his shoes,
Waiting to be worn-
Missing him and the work,
That they required.
They long to feel the dirt beneath,
Their soles.
I see him in a signature,
The ink barely dry.
I see him.
On this land-
The land he lived with,
Loved.
Lived for.
Raised his family,
And himself upon.
I see him in stories shared.
I see him in his friends.
I see him in my mother's gestures.
I see him in the faces of my brothers,
His grandchildren,
And me.
I see him.
Not with my eyes,
But with my heart, my soul, my memories-
In every step of my life,
I see him.
And, that is what matters.
He taught me that you cannot always envision,
What is truly there.
Sometimes you have to have faith.
And understand that,
You cannot fathom what riches-
There are to be behold,
If only you can believe.
Because of that,
And because of him-
I know that one day,
I will see him again.
I have no doubt.
With eyes that can actually witness,
What God has intended all along.
The first time I will see Him.

Saturday, August 4, 2012

Our Walk to Remember

We went for a stroll one morning,
Just my father and I.
As the sun awakened and rose in the east,
I took my father's hand-
And we walked along the country road that was our home.
As we walked, we reminisced-
We remembered.
We laughed.
We cried.
Days passed, years even-
Seasons changed as we walked,
My father and I.
We shared memories of our life spent together-
Memories that healed and memories that hurt.
We walked past green pastures,
And I saw through his eyes-
All of the moments,
That had sculpted his life.
I saw his love and dedication to my mother.
I saw the awe in his heart-
The day his children were born.
I saw his grandchildren,
Sons, daughters, family, and friends-
He had gathered along the way.
On our journey down our country road,
We rarely spoke aloud.
The conversations we had existed,
Between his heart and mine.
As the dusk began to fall,
And the sun was put to sleep-
My father gently squeezed my hand,
And I knew our time together was drawing to a close.
As I gazed out beyond our path,
I noticed that my road was coming to an ending-
While his was just beginning.
And even through my heartache,
I was happy for him.
This was the road that would lead him home-
Others waiting to guide him on his way.
To grasp his hand-
As mine slipped free.
Even through my anguish,
I understood-
He had been preparing me my entire life for this moment-
The time I would need to walk,
Alone.
Without his hand to hold.

The Last Season of a Farmer

The last season of a farmer,
It doesn't quite seem fair.
He'll never see the progress,
Of what he planted there.

The last season of a farmer,
He's toiled this earth with love.
The next harvest he will see,
Will be witnessed from up above.

The last season of a farmer,
The legacy he leaves behind.
Is one of riches far more great,
Than many ever hope to find. 

The last season of a farmer,
Was spent watching his family thrive.
Because no other crop ever measured up,
We are the memories that keep him alive.

Friday, August 3, 2012

The Heart of a Warrior

I come from Viking stock.  Thick warrior blood courses through my body.  My ancestors faced unknown challenges in that icy tundra with perseverance and determination. 

My warrior blood comes from my father.  For centuries the fighter spirit of our kin has been passed down through generations, and now, finds life within us...my father, my father's children, and my father's grandchildren.  It is a gift that's been honed for years.  Thank God for that, because now we're cashing in.

My father has a heart of a warrior.  He is quite simply, the strongest man I've ever met; even if you cannot see it from the outside.  He is facing his own icy tundra, but those of us who love him, would never know the pain he must feel. 

Even in his own hour of need, he is not thinking of himself.  Rather, the depths of his love for us shines on us and warms us.  He is wrapping us in a blanket of comfort, love, courage, faith, and family.  To understand how loved we are is enough to cause me to fall apart.  There are no words to describe what it feels like to know he is head-over-heels in love with everyone of us.  He will always protect us. 

My father carries on the tradition of those who have come and left before him.  Their spirit is very much alive in this modern day Viking.  But, unlike his forefathers, he comes in peace; he always has.  This Viking I know has the most gentle spirit.  He is honest.  He is fair.  He is loyal.  He is extremely witty and wildly funny.  He has never met a stranger. 

I hope when his warrior ship reaches its final destination, it is met with a quiet breeze, that will usher in all of those who have helped to make the Viking-who is giving us the warrior strength we will need to go on.

Thursday, August 2, 2012

Suitcase For Heaven

If I could pack you a suitcase for heaven,
What would I include?
I would fold you up a summer day,
With the flowers in full bloom.

I would fill your pockets with
Love letters,
Written from me to you.
One for each day
I will live my life without you.

I would bid you safe travels,
With the rich soil from your home.
I would tie it in a knapsack,
For with you it must go.

And just for you,
I would tuck away-
Little pieces of my heart.
Because home is where the heart is,
And my heart will go with you.

I would decorate your suitcase,
With pictures from your past.
In hopes that when you see them,
You know your memory will forever last.

I would blow in a thousand kisses,
With a wish that you would plant-
One upon your face,
If you happen to feel sad.

If I could pack you a suitcase for heaven,
The one thing I would like to send-
Is all the love I have for you,
Until we meet again. 




Please Don't Judge My Child

Please don't judge my child,
I can see it in your eyes. 
If you only knew his story,
You just might sympathize.

Please don't judge my child,
He hasn't yet found his voice.
When you hear those screams,
Sometimes they are his only choice.

Please don't judge my child,
He's as sweet as sweet can be.
He is my gift from God,
I urge you to try and see.

Please don't judge my child,
If you only knew-
How hard he had to work,
For what came naturally to you.

Please don't judge my child,
Because if you take the chance-
You just might gain a friend.
If you take a second glance.

Wednesday, August 1, 2012

The Ending of a Story

The ending of a story,
The last turning of a page.
The author's quill falls silent,
No more memories to be made.

The ending of a story,
An epic one at best.
Full of love and pride and laughter,
Of gentle smiles that never rest.

The ending of a story,
A life lived with strength and grace-
With faith that never wavered,
And understanding that rarely swayed.

The ending of a story,
I was blessed to have the chance-
To be a character in the making,
Of a life that too soon passed.

Thirsty

How will I manage to face the tomorrows that are about to come?  At what point will I be able to handle nothing more and collapse into myself?  Where will I go then?  What well of strength am I supposed to draw from?  I feel like I have been drained.  Empty.  There's nothing tangible for me to hold on to anymore.  A mirage is all that's there.  I am tired and thirsty.  Thirsty for a reprieve from the hurt.  Thirsty for a break from the pain.  Thirsty for a remembrance of what life was like before this drought.  I wonder if I would even recognize myself?  I pray for the day the rains will come.  But, I am terrified that when those torrential showers of emotions are finally set free, and my thirst is eventually quenched, it will be the day the last little piece of my heart breaks.  The day the dam of my soul succumbs to the grief.

Thursday, July 26, 2012

The "R" Word

The "r" word has been taboo to me for decades.  Not because of altruistic motives, just because once I was wise enough to understand it wasn't OK, I stopped using it.  Now, when I hear the "r" word, I cringe, even more so than before. 

For those of you who still utter that word, I implore you to find a new one.  There's plenty of them out there, but for me, my "go to" word is, "silly."  I know it may not drive the punch you're trying to get home, but try it.  I will thank you.  My son will thank you.  And millions of others will thank you, too.  (For those of you with other words, please post them on my wall, apparently it's needed.)

I actually had a conversation recently where someone said "that word".  I finally had the nerve to speak up and say that it wasn't okay.  Their rebuttal?  "Well, it's just a term.  Everyone uses it.  It's not about your son. It's just what you say."  This coming from a person who just spent an hour loving and doting on my child.  My response, "But, it is.  It is my son.  It's his technical diagnosis."  It was like talking to a brick wall. 

I finally decided not to argue anymore (because I knew I was right), but to speak to them from my heart (an angry heart, but mine nonetheless)  I just asked, simply, "It would be a gift to me and Trek, and all of us, if would remove it from your vocabulary.  It's not that hard."  It was only then that I saw a touch of sympathy. 

So, this one is for all of you who think it's OK to demean another person with your callous choice of words.  Just remember, those whom you degrade are some one and a part of some one's family.   And if you still choose to use "that word", I guess you're "lucky" enough to not have someone close to you have a medical term like that attached to them. 

Please have enough respect to spread the word to end the word.  Not that it matters, but WE will judge YOU for anything less.

Wednesday, July 25, 2012

Fragile X

Fragile X will devastate you, there's no doubt about that.

Fragile X will force you to cope with and understand even the most mundane of situations-never mind the really difficult ones.

Fragile X will make you research and learn a lexicon you had no clue existed.

Fragile X will rearrange your life; the freedoms you once took for granted have now been replaced by therapies that used to belong to others.

Fragile X will teach you a new language-one you speak not with your mouth, but with your hands, because that is what your child needs to navigate this world.

Fragile X will break your heart once and then again a hundred times over.

But...

Fragile X will also bring you joy.

Fragile X will make you smile and laugh until you cry.

Fragile X will make you proud of your children, possibly more prideful than you would have been without it.

Fragile X will show you compassion.

Fragile X will make you look beyond yourself, and once you do, it will bring you closer to those you love, and introduce you to a family you have been waiting your entire life to meet, even if you didn't realize it.

Fragile X will make you shine with every accomplishment-no matter how far behind schedule.

Fragile X will rewrite your story, but don't forget, you are ultimately the author of this book. 

Fragile X cannot determine the ending, only the beginning, because it's up to you to choose happiness, advocacy, education, and learning.

The opposite of this is frankly not an option. 

So, open up your hearts, your minds, and join me on this journey.  The ride may not always be calm, but I assure you, it will be rewarding.  Take it from me, I know, even if only the first few pages of my story have been written, you will love the view from here.  I promise.

Monday, July 23, 2012

Life is humbling.  There are experiences that make you grab it by the reins and beg for you to hold on.

Very recently, my family has been expected to raise that fabled bar and hang on for dear life.  In the wake of this unwanted turmoil, I have struggled to find peace.  Some days are much better than others.

I am more thankful today than I was yesterday, or to be honest, a week ago, or months ago, or even years ago.  Somehow, finding out "what was wrong" has freed me.  And it has forced me to search beyond my shallow self and put my soul out there.  To actually speak about what was wrong (or right) with my child and myself was not something I could have imagined doing. 

I was not always this way.  The night I found out about Trek, I was a mess.  A hot, blubbering mess. I felt hurt, disregarded, and unbelievably sad.  And, I was angry; really, really, really ANGRY!  How could this happen to me?  Didn't I already have enough to deal with?  My father had cancer, my brother's family was going through so much, and now this unforeseen blip on a gene had blindsided me. 

So, for a day, or two, or several, I walked in a haze of self-pity.  It honestly took everything I had to get out of bed, shower, go to work, and try and have a semblance of a life.  I was physically ill.  It hurt that bad

I thought if I repeated my mantra of, "I don't want to do this.  I don't want to do this. I don't want to do this," it would somehow go away.  I literally pinched myself just to be certain this nightmare was real.

But, I had support.  I distinctly recall, that first night, my husband, Doug, saying to me, "We cannot forget.  We cannot forget how bad this hurts.  Somewhere down the road, we will need to remember this to help someone else when they hurt like we do."  He was a man with a vision.  He knew what we had to do when all of the strength I could muster up was to stifle my cries in the dead of the night so I didn't wake him or our children. 

The first parts of that week are a blur.  I didn't eat.  I barely slept.  All I wanted to do was hold my family close.  I think I probably smothered them with enough hugs, kisses, and love to last a lifetime.  I trudged on, barely keeping pace with the world around me. 

The day we found out was Monday, March 26th.  The following Wednesday I was ready to share our news.  At the beginning of every staff meeting at my school, there is a time to share-celebrations and a-ha moments.  I waited until the end of that time, and feeling a little bit guilty for being a downer, I shared our news with those who had been on the journey with us.  I shared the news that my sweet, beautiful son, the one whom I had celebrated with pride when he hit his gross motor skills at "the end of the benchmark" and was elated when he began to babble at 20 months old, had fragile X.  It was one of the hardest moments of my life.  I barely had the wherewithal to get through it.  To utter the words out loud and to explain it was beyond heart wrenching.  I sat through that meeting without a clue as to what they were talking about.  The only place I wanted to be was home.  Home with my family, to shelter them from the whirlwind that our life was about to become. 

At the end of that week, I found a beacon.  I finally had enough courage to visit the fragile X sites.  God knows when I first googled this "monster" there was not a lot of hope out there for us.  Then I happened upon the National Fragile X site, and it was there I found Ashley.  A mother of a kiddo in Phoenix who knew exactly where I was coming from.  She gave me peace.  After talking to her, I slept for the first time in months.  I trusted her and what she was saying...that it was going to be okay.  It may not have been the life I envisioned, but it still had wonderful things in store for me and my family. 

Not long after that, I found Kathleen.  That beautiful soul I mentioned yesterday.  I think it was fate I happened to stumble (and stumble I did) upon her blog.  She put into words every single thing I felt.  She KNEW how wrenching it was to hear "those words" for the first time.  She KNEW how angry I was.  She KNEW that I felt broken, ashamed, and sorrowful.  She just KNEW. 

When I decided to reach out to these women, my life changed.  And unbeknowst to them, my family's life changed, too.  I became happier, more understanding, and loving.  I became a better mother, wife, friend, daughter, sister, and teacher.  THEY did that for me.  And, at the time, I had not even met them.

I have many families.  Those who share the same experiences of my childhood, those who were with me growing up, and all of those I've met along the way.  I also have a family of souls I only know because I am a carrier of fragile X and my son is affected by this gene I passed on.   They are my family who help us get through everyday life...speech therapists, physical therapists, occupational therapists, and play therapists.  They are doctors, specialists, geneticists, and pediatricians.  They are those fx families who bare their souls to help those of us who need a hand to hold and guide us on this very scary journey.  They are the children affected, like my son, and the brothers, sisters, fathers, grandparents, aunts, uncles, and cousins we love. 

To those who have not been on this journey, or one like ours, I'm sure it sounds surreal to say that I could not and would not imagine my life any other way.  That repeat of "threes" has given me love, and friendship, and support that just keeps repeating itself-day, after day, after day. 

The Strength of a Person

The strength of a person is rarely seen on the outside.  The true strength of  a person rests in places we cannot imagine.

The strongest people I know are those who are lost and forlorn.  Those who have the courage to face the most dreadful of days.  The days they feel weak, and helpless, and searching for a safe place to land...a cushion to rest their weariness.

If we can all stop for a moment and look beyond ourselves we will feel the true strength of those who share this world with us.  And if we are brave enough, we just may learn something about ourselves, in the strength of another person.

A Home Within My Heart

God has niched out a place within my heart that is a home for those I love.  It is a place I carry with me everywhere I go. 

They accompany me on the roads of pain and carry me on when I grasp to find the ground to put one foot in front of the other. 

They bring me peace as the new dawn rises and as the angels appear to sing me to sleep at the end of the hard days.  They are the sweet lullaby that knows the song I have inside of my heart. 

They may not know they walk this path with me, but they are there.  Gently nudging me forward and guiding me on my way.

I take from each of them the parts I need to survive and it is my prayer, as I carry them on my way, that I can fill their hearts just as they have filled mine.

The Inspirational Women I Know

The inspirational women I know have changed my life.

The inspirational women I know face obstacles in their midst with grace and courage.

The inspirational women I know fight cancer-cancers within themselves, their spouses, their siblings, and their children.

The inspirational women I know face diagnoses that are foreign and obscure to them-some with names they cannot pronounce.

The inspirational women I know have lived unimaginable losses.

The inspirational women I know go on despite the loss of their children, and they fight hard to keep their memory alive.

The inspirational women I know are single mothers who alone raise their children in this unfamiliar world.

The inspirational women I know are grandmothers, mothers, sisters, and daughters.

The inspirational women I know find hope and strength in the deepest recesses of their soul.

The inspirational women I know are tough.  They are strong.  The shine their light for all of us to see.

The inspirational women I know inspire me-they let me know I can pick up the pieces of my life and go on.  Because if they can do it, then it shouldn't be that hard for me.

The inspirational women I know are some of the most precious souls on earth. 

Let it be a lesson to all of us...Love them, treasure them, and never let them forget just how awe inspiring they are.

Saturday, July 21, 2012

Doug

My Doug,

I am writing this to you on my birthday because you are the most precious present I have ever received.  You are such a rock to me in this very uncertain world.  You sew the pieces of me together.  You make me want to do better, you make me strive to make our ends meet. 

I am sending this to you on my birthday, because if I did not have you, nothing would matter.  You are the beacon that brings me home, you are my solitude, you are a gift that I feel I did not deserve.  It may sound silly, but I cannot imagine my life without you. 

YOU,  are amazing.  YOU hold my hand when I reach for a soul to hold dear.  I cannot, could not imagine my life without YOU.  YOU, help make me whole.  YOU, hold my world in your hand.  YOU, are such a gift.  I love, YOU.  Thank you for always trusting in me, and us.  Thank you, for being the strongest man I know. 

YOU are "Tougher Than the Rest"

I love you,

Sarah
http://www.youtube.com/watch?v=_91hNV6vuBY

A Heart That Hurts

A heart that hurts,
Is not always seen by the naked eye.
A heart that hurts
Lives deep inside a soul.
A heart that hurts,
Is hidden behind a smile,
A laugh,
A nod.
A heart that hurts
Finds a way to go on.
A heart that hurts,
Never heals,
Regardless of the hours
It puts into going forward.
A heart that hurts
Changes a person. 
A heart that hurts,
Sheds an ocean of tears,
Some that are seen,
Others that are not.
A heart that hurts,
Belongs to us, but welcomes
Those who are strong enough
To journey with us. 
A heart that hurts
Knows no answers, no cure, no way
To stop the tears.
But, a heart that hurts,
Will love a knowing smile,
A touch of the hand,
A squeeze that says all will be
Okay.
A heart that hurts,
Cannot bear to be left alone.
Are you strong enough to accompany me on this journey?
I cannot face it alone.

A New World

An entire new world has been opened up to me, one I never knew existed.  A world of friendships and knowing souls who happen to be on the same path as me.  A world of hope and altered dreams.  I do not know where my other path would have led me.  I have ideas, I have visions, but now it is my destiny to make those new dreams come true.  How do I do this?  I don't know.  Maybe my path is paved in part by those who have been there before me. Those who have laid the ground for me to follow.  One step at a time, trudging onward, making my way.

Thursday, July 19, 2012

Lucky

Once upon a time, before I was born, I imagine God placing his hand on me and deciding my fate.  When I think about this, I am overcome with emotion.  Why was I chosen to be so blessed?  So lucky?  What did He see in me that would warrant such love?  I pray that even in my times of turmoil, when I lose my way, I can always see the silver lining God has had in place for me.  And in those times that I do forget, I pray that He will continue to surround me with beacons of hope that will guide me.  One day, when this journey here on Earth is through, and I meet  my Maker, I pray I remember to thank Him.  Thank Him for the good and even more so for the bad, because had I not been tested in my faith, in the times that left me sullen and searching for a reason to go on, I do not think I would have found what He indended for me to find.  It's easy to see all of the beautiful things that surround you when the seas are calm, but even harder when the waves come crashing in.  But it's in those times that your character is built, and it's built on a very solid foundation.  Those are the moments that your journey leads you home.  I am lucky, indeed.

Medicine

The medicine I need doesn't come in a bottle; it cannot be prescribed by a doctor.  The medicine I need is found in laughter with friends.  It rests in the knowing smiles and touches from my husband.  It's the witty quips and nonsense from my son.  The cures that ail me are bone-crushing hugs from my family and a shared understanding that belongs to only us.  It's the simplicity of a smile found in the seconds we are fortunate enough to be in each other's company.  My heart is full, my smile large, and my entire world complete, surrounded by those I love.  I carry the medicine I need in my heart, it's with me always.

Different Kinds of Tears

I have cried many different kinds of tears; each one shed a little like a snowflake, no two are the same.  I have cried tears of sorrow, tears of loss.  Tears of joy and happiness.  I have cried tears for the past and sobbed for a future lost.  I have cried tears of pain, of anguish, hurt and longing.  I have cried tears for those I miss and tears for sweet souls who are still with me.  Today I cried tears because of the kindness of friends.  A well of emotion sprung free inside of me.  Even when I am at my lowest, I feel so loved.  For every tear cried over what I have lost, I have cried a thousand in thanks for what I have gained.  Some people live a lifetime searching for what has been given so freely to me.  Even in the midst of the most unfortunate of situations, I am exceptionally lucky. 

Tuesday, July 17, 2012

Culture

From the time we are born, we are welcomed into one culture or another.  We adapt and learn the language of that which we are a part of.  We belong to a culture of family and gender, school and fraternities, and for some of us parenthood.  At some point in life, we all have to learn the culture of loss.  Many of us have the burden of losing children, parents, family and friends we hold dear.  For others, we lose part of our dreams for the future to diagnosis we never imagined could happen to us or someone we loved.  When we become ingrained in this unfamiliar culture of loss, we must learn a new way of surviving, because the old way of doing things suddenly makes no sense.  We become very versed in grief, and sadly, the grief we know isn't on a continuum.  It is unpredictable and changes on a whim, one small misstep and we begin the process of healing all over again.  By the sweet grace of God, eventually we begin to cope with our new life.  The culture we now belong to requires that we face most days with strength and courage we never knew existed within us.  At that moment we decide to keep living, we become part of a culture of survivors.

Sunday, July 15, 2012

Country

I grew up in the country--a farmer's daughter to the core.  My playground was not confined to a room in our house, but rather the great outdoors that was my backyard.  The creek beyond the mulberry bushes and next to the lazy Susans was my swimming pool, and there I was in heaven. 

I am a product of gravel roads and fields of green as far as the horizon.  Lush trees in the summer, yellow tassels in the fall, snowdrifts in the dead of winter, and new beginnings every spring.  Every day, I was free to roam as I saw fit.  I know these parts like the back of my hand--they are like a glove that will always fit--I do not need a GPS to bring me where I need to go. 

When my sons and I arrived home a few nights ago, the grumble of the gravel beneath our wheels was a sound that defines familiarity, it was a sound calling us home.  The dust that collected all around  us had done so thousands of times before, sometimes with me at the wheel and other times I was allowed to sit back and enjoy the view. 

Today, I took a trip down memory lane with my son, Tate.  As a child, my landmarks were never street names, they were gravel roads.  The directions I knew were: Turn left after so-and-so's farm, right a mile down the road, all until I reached my destination. 

This afternoon, very dear family friends had a reunion for all of us with that shared connection.  I was able to find my way "home" to them via country roads and fields my family toils.  My memory served as my guide. 

When I eventually turned down that long country lane to that home imprinted in my youth, I was welcomed by smiles and hugs from many souls who mean so much to me.  For many of them, it had been decades since we had seen each other, but none of that mattered.  We have a shared history that defies the ticking of the clock.  For me the country, my country, will always be home.

Tuesday, July 10, 2012

Tate

(A Very Open Love Letter to My Son)
Dear Tate,

I was just laying in bed, thinking about you, and this blog, which was originally started as a way of dealing with my pain of finding out about how fragile x has affected our family, and I realized the only thing that was missing from this page was you.  So, my sweet, amazing son, this one's for you.

I think every parent out there says they cannot imagine their life without their children, but, T, this holds so true for you.  Your daddy and I so often say that you are our miracle.  When you're old enough to realize just how special you are and how genetics work, I hope that you will realize what a blessing from God we think you are. 

You are so smart, loving, and caring.  You need only be taught something once and it holds firm in your mind.  I find so much pleasure in watching you learn and grow.  I also find joy beyond my wildest expectations in conversations with you.  You are wise beyond your years.  I hope that never changes.

I'm sure you are realizing that our family is not the "norm", and Mommy and Daddy spend a lot of time trying to figure out the most basic things.  I hope you know that it's because we love you and your brother so much.  We only want what's best for both of you.

I see in you so many traits that I wish I had, Tate.  Your capacity for love is unparalleled.  You accept everyone who you meet without question.  You have a heart of gold.  You are kind, sincere, and thoughtful.  You are such a good person.  I hope that I can continue to nurture that innateness within you.  You were born with a beautiful soul.
 
So, my son, my wonderful son, my wish for you is to always know how much I love you and that you never feel left behind.  I think you are beyond amazing.  I'm proud to be your mother in even your weakest moments, because those are the times that will build your character. 

I will never let you fall.  I will always have a hand there to help you up.  No matter what life has in store for all of us, you are a part of me that I hold dear.  I love you.  You mean everything to me.

Love,

Mommy 

Monday, July 9, 2012

Where Do We Go From Here?

Where do we go from here? 
What To Expect The First Year,
Left us behind around seven months. 
There is no map into my child's mind. 
However, we do have guidebooks. 
We have tour guides who have traveled this road
Before us. 
Even with them,
This is a road
Less traveled.
There is no smooth sailing.
Rough terrain
Awaits us
With every step.
Life jackets are there,
Strapping us into place,
But, they don't always fit.
We struggle,
My son
And, I.
To make our ends meet.
To connect. 
To make peace
With what connects us.
Together, I guess,
We cannot sink.
We are a buoy
Keeping the other afloat. 
Bobbing on the water's edge.
Always one step from the shore.

Park Benches

I sit on a park bench, open only to those who suffer.  Many days, I am passed by unnoticed. Families, singletons, young and old shuffling onward without a trace of knowing they are making footprints in the tears that I have shed.  Other days, all eyes seem to peer into my soul.  Seconds, minutes, days, months, and even years appear to blend in with the rising and setting of the sun.  It all depends on the moment.  Sometimes, I am able to pry my eyes away from my own suffering and smile and revel in their joy and other days, I find comfort in my own pain. On those days when it becomes too much, if I have the courage to let it, that simple little park bench that I've been perched upon, opens up to fit a gaggle of companions.  All of us, birds of the same feather, part of the same wounded flock, if ready and willing, can lift each other up and fly away from what seems to keep us standing still.  We heal each other's broken wings.