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Fragile X will rearrange your life; the freedoms you once took for granted have now been replaced by therapies that used to belong to others.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


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


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,


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
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


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.


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


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


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


(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.



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.

The Harvest of a Wildflower

In the winter of 2010, when I was very (uncomfortably) pregnant with Trek, Tate and I planted a few seedlings in a pot in our backyard.  Over the years, we have watched them grow, flower, and become a wonderful plant despite the scorching Arizona heat and cold desert nights.  Recently, it has been brought to my attention how full of life our plant has become.  I cannot help but draw the parallels between those seedlings and my Trek.  Sometimes, you forget about what needs to be done to make your crop flourish; it just becomes second nature, and if you give them what's important, what they need, they will grow beyond your wildest expectations.  A green thumb is oftentimes honed in the most desolate of soil, but if you have the patience of a gardener's hand, you will be blessed with the most beautiful of harvests. 

Saturday, July 7, 2012

My Heart in My Hand

So this is what it's like to hold your heart in your hand. I imagine my entire world sitting perilously on the cusp of my fingertips. One false move and it will go tumbling down into the great unknown. I feel so ill-equipped. When did I become qualified for such an endeavor? The last I knew, I was a child, a wife, a new mother, the world within my grasp, and now, I am forever changed. How can I ever deal with such a thing? How do I go about redefining myself? I wish I had the answers, but sadly, I don't. I am on this journey, the same as everyone else..trying to find my way in the dark. Searching for answers the same as every soul out there. I just hope that one day, I can find my peace in all of this, in this wonder of living. I guess that's what we're all searching for, whether we know it or not, to find comfort in what surrounds us, in what we hold dear, in this thing called life.

Time Stands Still

When I see them,
Time stands still--
I am lost
Somewhere between my childhood and now.
So much has changed,
Many roads have been traveled
And apart.
I am thankful I am a witness
To all our lives have to hold.
The good outweighs the bad.
We are sewn from the same thread,
Woven from the same loom.
All of us-
Without each other we would unravel.
Forever searching for the needle to make us whole.
Connected by love,
Bonded by faith--
We are the simplest,
Yet the most complex thing there is.
We are family.


Happiness is as simple
As a squirt gun
On a Saturday afternoon.
Nothing is more
Precious than laughter
On a hot day,
Spent with family.
Smiling is a salve.
It heals all that
Ails you.
What more can you want?
Trust is knowing
They are there for you.
No matter how deep the water is.
The key remains
In knowing
You can forever touch
The depths.
Because, someone is always
There to catch you.
I will never fall.

Friday, July 6, 2012

Glass House

I live in a glass house-
One that I cannot escape.
How I would love to throw rocks
And shatter
Everything that encloses me. 
From the inside of my glass house-
I can see
Unfolding around me.
I press my hand to the glass
I feel their laughter resonate.
I see their happiness.
I long to be with them,
To be one of them.
My insides shatter every single day
As I watch this unfold around me.
With every step forward,
I wince in pain
As the shards of my broken heart
Pierce my feet.
But onward I must trek.
I have no choice. 
Someday, I will destroy this house
That traps me. 
And, I will have the cuts to prove it.
The battle scars of a wounded heart.


I gaze into the mirror
And I wonder,
Who is that person looking back at me?
When did she grow so tired?
When did her smile
Turn to anguish?
Life changes instantly.
I once skipped nonchalantly
Down my path.
Unconcerned with time--
Because it was casually on my side.
Now, I live a thousand years every day.
For once being so young in spirit,
I now feel old at heart.
And, I am sad.
I mourn my carefree self.
If I could meet her,
I would hold her tight
Squeeze her hand and wink.
I would tell her not to worry,
That she will have of time for that
Once the clock turns her page.

July 1, 2012