Friday, January 29, 2016


Sometimes people call me strong, and I don't always agree with that.
I don't perceive myself as strong.
In fact, I see myself as a weak person
Who was thrust into situations I didn't want.

To me, strength means being ready for hardships and being capable of dealing with them.
I am neither.
I fall down. Sometimes I stay down for days, weeks, months at a time.
To rise back up to normal takes an inane amount of will.
It's very difficult.
But, I do it.
I still do it.
And, it feels right.

I sometimes wish life were easier.
I wish I didn't have to fall and dig my way out of my dad's passing.
My son's disability.
My daughter's death.
And every unspoken loss we've faced.

It's taxing and it will take a toll on you.
I believe I am a much better person now.
More understanding.
More compassionate.
More loving,
But it's come at a cost.
And, for better or worse, I will never be the same person I was 4 years ago.
It's just not possible.

I just hope in being different, I'm better.
I don't think that's too much to ask.

Wednesday, December 30, 2015

The Pain of LIfe

I hate the bruises,
But I look at them.
I own them.
They are mine.

I watched the nurse
Take my blood.
I told her where it was best
To drain me of a little life.
I was trying to be helpful
Because I don't bleed easily.

I sat there
And answered the mundane questions of:
Why are you here?
My baby died.
Do you feel safe?
I suppose, but life scares the hell out of me.
Do you drink?
Well, I didn't. I was pregnant, but I might start now.
How many children do you have?

Three. Two sons and a daughter.
She had a name.
A beautiful, perfect name.
But, she's gone now.
Please give me something for the pain.
Can I have my husband now?
I need him. Desperately.

And then it was over.
The life drained from me.
And I don't even recall the pain.
Thank God.

And now, I  watch my children study my bruises,
And wonder why Mommy is hurting
But I can't explain why the physical
Will never hurt as much as the mental.  
So, I hold them close.
And at night, when the softness of dreams is the only sound,
I touch them.
Ever so gently
And I am so thankful I have my precious children here on earth
To heal my broken heart.

Monday, December 28, 2015

As She Mourned Herself to Sleep

As she mourned herself to sleep,
She allowed the memories, the hopes, the dreams, the promises, the defeat, the heartache, the death,
To tumble out of her eyes.
And create the ocean-
On which she rocked herself to sleep.
Comforted only by herself-
As even those close to her,
Could not enter this space.
This place of grief
Was hers alone.
Not to be shared with others, like she tries to do
During the hours the sun tries to blind her-
Because she's not quite ready for the brilliance and the hope that star represents.
Not just yet.
The darkness inside is just too deep.
And to let the light shine in too soon,
May ruin everything.
There are times you need to live in the depths of the hell that was thrust upon you-
To eventually rejoice in the heavens you know are waiting...
Sadly, there's no timeline for grief.
For healing.
And she's been here enough.
Not this exact space-
Because this darkness belongs only to a mother who has lost her child-
To know that time is what she needs,
But time is what she dreads.
This territory is unfamiliar.
And scary.
And unfair-
To any who've suffered it
Her heart not only breaks for herself,
But for those she loves and for those she does not know.
The weight feels like it's crushing her from within,
And chokes her with grief.
It is horrible, and for now,
There's no escaping it.
Rest softly, sweet girl.
Let the angels of dreams take care of you for now-
Tomorrow will be upon you soon enough,
And I pray that you will grieve for one minute less than you did today.

Tuesday, December 22, 2015

How Could I Have Thought?

Aren't I arrogant enough to believe it couldn't happen to me.
Wasn't I foolish enough to think I could escape this heartbreak.
How could I believe I was immune to this hurt.
This devastation.
This death.

We played our cards,
And fate interceded.
We lost.
Our hearts broke.
How do we recover.

Again. Again. AGAIN!

I am tired. I am hurt. I am shocked.

But, I am also more compassionate.
More understanding.
More than I was earlier this day.

My angel is spending her Christmas in heaven,
Wrapped in my daddy's loving arms.
I will meet her-

But now, I miss her tremendously.
The vision of her.
The thought of her.
The longing for her.

Sometimes, life is just too hard.
I miss her already...

Thursday, November 19, 2015

The Journey to Her

She came to me in a dream, that world where the lines between fantasy and reality are blurred, and your deepest longings are right at your fingertips, and you truly believe that miracles can happen. I longed for her; she was one of my deepest desires, but in my waking world, I didn't think she would ever belong to me.

I have always wanted three children. I came from three, Doug came from three, and three just seemed to fit perfectly. But once fragile X showed its face, I tried to resolve myself to the fact that perhaps three did not belong to me.  And the realization of that broke my heart; not once, but a million times over.

In the past three years, some little part of me still lived in that dream world, and I prayed. A lot. I prayed that God would help her find us, however that may be. That was my prayer, as simple as that, "God, please help our little girl find us." I had no idea how it would look, but somewhere inside me I knew she would find us somehow. However, I never imagined it would be this way.

Last spring, almost out of nowhere, my heart was ready and together, Doug and I made that giant leap into the world of pursuing IVF. We'd tossed around the idea three years ago, less than a year post FX diagnosis, but we just weren't ready. But, last spring I was, and I believe that was God at work answering my prayers in a way I didn't think I'd even consider. Funny how that works.

No one tells you about the emotional toll fertility treatments can take on you. The constant worry coupled with cautious optimism is not for the faint of heart.

Last summer, as everything started falling into place, of course, so did the God Winks. Incredible, amazing, surreal reminders that we were not alone and if we ever slipped and thought we were, we were reminded very quickly that we were not.

The day we found out how many of our little babies made it was the third anniversary of my dad's passing. Three years before, my heart was breaking as I said goodbye, and now, the tears were flowing at the very real possibility of being able to say hello again.

A few weeks later, on the day we found out the date we were going to transfer our little girl, my monarch caterpillars showed up. The first ones I'd ever had at my house. Another thing I'd longed for since my dad had passed. Nothing more in nature reminds me of my dad than the monarch. I was over the moon and God's been winking at me long enough for me to realize this was not a coincidence.

One of my winks from God.

As the weeks passed, I not so patiently waited for the blood work that would confirm what I'd already suspected; the procedure had worked and I was pregnant.

During that time, I'd enjoyed watching my caterpillars grow and on the day the first one made its chrysalis, I jokingly said to Doug, "Watch, it'll eclose the day we find out if she stuck."

The morning of the blood draw, I woke up and checked on my babies and I was astonished at what I saw. Two black chrysalides. I knew what that meant; they were going to eclose that day...the very day I'd kiddingly predicted them to. I was awash with emotion. I bawled. I talked to God and my dad. I thanked them for being with me. I hugged Doug and I sobbed. The beauty of it all was overwhelming. I think part of what struck me as being so amazing is that based on what I know about how long it takes for a butterfly to form, there was really no explanation as to why they were eclosing that day. Quite simply, they hadn't been in their chrysalises long enough.

That night, as I drove home, God winked again. The entire drive, I was fortunate to see the most beautiful double rainbow. All I could think of was that God puts rainbows at the end of every storm. The peace I felt was indescribable.

The next day, I let my God Wink go. I set her free on four wings and a prayer. What was truly incredible was the fact that she stayed with me for at least ten minutes, which, from my experience is unusual. She just sat there with me and I enjoyed every single moment with that beautiful, heaven sent, amazing, miraculous little girl.

And now, I wait for our angel; and very few moments go by without me deeply understanding how incredibly blessed we are.

And, that, is my journey to her...

Sunday, January 11, 2015

God Winks: An Incredible Story of Family, Time, Butterflies and Angel Trumpets

It's truly incredible to witness and understand exactly how specific God Winks fold out over time.  Once my eyes were opened and my spirit attuned to the beautiful synchronized world God has created for us, it is marvelous.  I believe that in life there are not coincidences, but rather, winks from God, coming at just the right moment; letting us know that we are never alone and his plan for us is a magnificent one.

Picture the scene: 1959, rural Iowa, a boy and his little sister in a flower patch at dusk.  But, not just an ordinary flower patch, this one was special, this one was the angel trumpet patch in their grandparents' yard.  The children you see here, are my father and his little sister.  The first two characters to come into play in this God Wink.  More will be added later, but without these two and this picture, the rest of the story may have gone unnoticed.

Pam and LeRoy in the angel trumpet patch, September 1959.
Fast forward to forty-two years to another September day in Iowa.  September 1, 2001, the day those children lost their father. On the night of my Papa Dale's visitation, an idea formed--an idea that soon flourished and added the next chapter in our decades long God Wink.  My aunt happened to live on a farm that was in the direct migration route of the monarch butterflies.  As we gathered up our grief, my aunt, cousins, brothers, and I tiptoed into the night and gently gathered up hundreds of those winged beauties.  We placed them in huge plastic containers and waited for the dusk to turn to dawn and the breath of a fall day to kiss our cheek, because that would be the time. 

As we neared the end of my grandpa's graveside service, the butterflies were let go and with a flourish, our prayers were sent up to heaven on the wings of those angels.  It was moving.  It was poignant.  It was a moment that changed our lives. From that moment on, I don't think any of us looked at a monarch butterfly the same way.  Each time we saw one, we always remarked that Papa Dale was coming for a visit.

And from there, life happened.  For a time, each of us was focused on our own lives and where we were headed: college. career, marriage, children. That is, until, it was time to send another one home. 
Fall again, not September this time, but close enough, August 6, 2012, the day my father got his wings. Having lost three grandparents and many friends, I thought I had a handle on grief.  I thought I understood the kind of emotions that were about to happen.  As that monarch butterfly that had been visiting my dad the day he passed, flew by one last time, I realized with a shock that I had absolutely no idea the kinds of emotions that were about to be thrust upon me.  To lose people you love is difficult; to lose a parent is devastating. 
Those two weeks spent in Iowa were healing.  I tried desperately to absorb every moment there; chronicling much of it on this blog.  As I released a little bit of the pain with every blog post, I had my eyes open for the slightest movement.  I was on the lookout; I needed a monarch.  
And, that last day there I got two.  The first flew right in front our my mother's windshield at the cemetery we buried my father in.  The other flew back and forth, back and forth, outside of the picture window my dad loved to look out.  I was comforted.  I felt an embrace of love from beyond.  I was rewarded a vision of what I desperately needed to see.

That's when things got interesting!  That fall, the butterfly winks began to rain down from heaven.  A welcome reprieve from the happiness drought I was in. I met my neighbor, Gail, and my life changed. I love our story, if you'd like, you can read it here.

And then more time passed.  A little over two years.  During that time, my family was grappling not only with the loss of my dad, but also with my son's diagnosis of Fragile X Syndrome.  Within four months of Trek's diagnosis, we lost my dad, and then just a few months later, we suddenly lost my aunt.  It was as if life decided to destroy everything that anchored us.  We were forced to rebuild and it was hell. We were thrust into the fires and there were many times I was certain it would consume me.

During this time, I had very little contact with Gail.  We would text once in a while and occasionally I would stop outside of her house and watch the butterflies flutter around.  The problem with being forced to rebuild your life is that it doesn't leave you much time for anything else.  I still am bewildered that we marched through those first few years, but we did, and, how cliché, we are stronger, better people now than we were then.

This past December, my son Tate and I went for a walk.  On a whim, I decided to walk past Gail's house.  We stopped outside and I was showing Tate her Monarch Butterfly Way Station post, when Gail's husband, Bob came over and started talking to us.  The next thing I knew, Gail was outside and was offering a monarch chrysalis for us to take care of.   Such a small gesture, but it literally left me in tears.  I was over the moon and so excited that she would trust me with such a treasure. 

I could not get enough of our chrysalis.  The metamorphosis of the butterfly is amazing.  I watched it every day.  I took pictures.  I posted pictures on Facebook.  To be in the presence of a miracle was almost too much excitement for me to contain!

Around this time, I received an unexpected package in the mail from my Aunt Pam.  She had sent me that picture of her and my dad in the angel trumpet patch and also seeds from that very same plant, so I could have my own flowers if I wanted to.  So often, it's the smallest gestures of kindness that take your breath away.  Immediately, the picture of her and my dad found a permanent home in my kitchen where I see it every day.  

Once our monarch eclosed, I took it back to Gail's house to set it free.  I have to admit, it broke my heart a little bit to let it go.  Once I got to her house, God Winked again; this time, fifty-five years from the moment he set it in place.  The miracle we were able to watch unfold, the miracle of the monarch butterfly, the biggest reminder my family has of  my grandfather and father, had found its home; fittingly on an angel's trumpet.

A piece of God's puzzle, put in place, December 2014.

God's winks ...
Squire Rushnell: God Winks

Saturday, December 6, 2014

Healing, Happiness and (Almost) Coming Full Circle

Doug and I spent today surrounded by our family.  Not our blood family, but our family of circumstance, our family of situation, our family of choice -- our lifeline, our hope, our brothers and sisters, sons and daughters -- we spent today surrounded by our Fragile X family. 

Over the years, there have been many gatherings with our FX family that we've been a part of.  It's incredibly healing to be with others who truly understand and "get" our journey. 

Today, I met a mom whose son had just been diagnosed.  She was scared, sad, overwhelmed, unsure, and feeling alone.  Although we had just met, I knew her well.  I was her two short years ago. 

Many parts of the day Trek was diagnosed are a blur.  I remember bits and pieces, but there are two things I'll never forget.  I will never, as long as I live, forget how I felt.  There are no words to explain my physical reaction to the news.  It was visceral.  I was numb.  I was scared.  It was so powerful it sent me to the toilet vomiting.  It was, for lack of a better word, awful.  Utterly awful.  I was hopeless. 

I will also never forget Doug's words to me as we lay in bed that night.  He told me that we needed to remember exactly how we were feeling because someday, another family would be diagnosed, and we could be there for them.  At the time, I couldn't imagine getting out of bed and dealing with my new life let alone helping someone else. 

Eventually, I did get out of bed and those days and nights of blurry sadness gave way to days of partly cloudy skies, weeks with no rain, and years of sunshine.  Eventually, I did learn to live again.  I genuinely smiled, laughed, and found joy. 

Today, I hugged that new member of our family and I cried with her.  I cried for her.  I grieved for her loss and I just wanted to scoop her up and fast forward her a few years down the road and place her in a spot of acceptance and peace. 

As much as I wanted to do that for her and take her pain away, that's not possible.  Like another FX mama said, "You've got to feel this."  She's right.  As excruciatingly painful as it is, you've got to live it and figure out your way through it; it's the only way to heal and to come out stronger on the other side. 

But, I could tell her it's going to be okay.  No, really it is.  I promise.  Things do get better.  You will figure this out.  You will find acceptance.  The pain never goes away, but it does dull, and as my friend said, you do get to a place where you can see typical children and not feel like you've been punched in the gut. 

Most importantly, I hope that she left all of us today feeling like she's no longer alone.  I hope that she left knowing that she's part of a bigger family than she could have ever realized.  I hope that she knows that she's loved.  Each of us know her well, in an essence, we are her.