Ashley's Story

She will leave fingerprints all over your heart

4/24/2014

What we should have felt...

...was hope.

What I expected to feel...

was hope.

We lay awake in the early morning hours, silently, knowing the other was awake...still...there were no words spoken for quite a while.

"I didn't expect to feel such pain today."

That's what he said to me...the tears fell from my eyes and covered my pillow.  It was an overwhelming, heavy, suffocating pain that enveloped us both.

I hesitated to even try to put anything into words, but to be honest I didn't expect the pain of her absence to come over us the very moment our eyes opened this Easter morning.

Hope is what I thought this holiday would bring to our exhausted, broken, shattered hearts.  It did not.

We went through the day struggling.  We cried.  We hurt.  We were silent.  We were angry.  We were confused by it all.  Still are.

The letters H O P E hang on the wall in her play room.  I can't tell you how many times I have felt like ripping them down off that wall in the last 8 months.  There was a moment as she lay in her hospital bed underneath those stupid letters that spell that stupid word and I knew, it came so violently to me, and I knew there was no more hope.  We were no longer hopeful that she would recover.  I have resented those letters and that word and what it once represented in our life for so long.  Its ridiculous, I know, but its the truth.

Then Easter came.

 Our first one without her.

  For some stupid reason I had convinced myself that I would feel comforted and hopeful knowing that because of His resurrection I would one day see my sweet Ash again.  I could not have been more wrong. We felt devastated.  We did.  We felt betrayed and broken and destroyed.  What should have brought comfort to our aching souls only seemed to hurt all the more.  I don't get it.  I've spent this week trying to understand why it hurt us so deeply to endure this holiday without her here.  I know in my heart where she is and that her celebration was more than I could ever comprehend.  Still my soul, the deepest part of who I am, is screaming.  It is.  I wish it weren't, but it is.  Still.

We did not feel what we thought we should have felt.  It gets harder every day.  Don't be fooled when people tell you that it will get easier.  It will not.  It does not.

4/13/2014

A Brief Moment

One moment she was here...the very next she was gone.

It seems as though her 8 years were so brief, so short, that it was only a moment that she was here with us, part of us...the biggest part of us. 

But now the moments without her here are dragging by so slowly I wonder when will it ever stop.  She filled so much of my day to day moments to overflowing that now I struggle to get from one to the next.  

For a brief moment I saw her...I looked into her eyes...and it  caught me off guard.  There is only one person on this earth with eyes like Ashley Kate's and when I turned around I saw her there.  

There are images in my mind from her last moments on this earth that only I witnessed.  I am haunted by those images when I close my eyes.  Some nights I can't escape the moment and I'm so grateful it is my burden, my pain, and my moment to carry alone.  I couldn't bare the thought of Dave having to live with it.  Or Blake or Allie carrying it for the rest of their lives.  It was my eyes that opened and realized she was leaving us.  She had held on through the night...she had waited till morning...she had wanted us to be with her... In those awful moments I knew... I knew what I had realized just a moment before...and we surrounded her and held her and loved her through her last moment.

Time is a funny thing.  The  moments that make up this life are so brief.  "A vapor" is what we are told...and yet each moment since she left has felt as though I'm living through an eternity without her.  

As I sit and sort through files and files of images and pictures and clips of video for Blake's senior banquet I realize how amazing, how wonderful, and how incredibly happy our lives once were.  Ashley Kate's smile, and her twinkling eyes, and her laughter, and her beauty are weaved all throughout the very best moments of our lives.  

For a moment she was really, really beautiful...she was really, really happy...she was really, really here.  She was.  If only for a moment. 

3/29/2014

I miss her...

desperately.

My soul aches for her.

To touch her.

To kiss her.

To hold her.

Just once more.  If only I had one more chance to whisper over her how desperately she is loved.

I lie awake each night.  Longing to hear her laughter spill down  the hall into our room. I search for her in my dreams and yet I never find her.  2am...4am...5...Dave says to me..."why are you awake?"...all I can do is say to him..."I miss her."  To which he answers..."I'm so sorry.  I'll never understand.  It makes no sense."

7 months have passed since we kissed our sweet girl. At 6:48 this morning  I once again fought the memory of  when she took her last breath as it came so vividly, so loud, and so real to me.  I knelt next to her tired body that morning with my hand under her neck and held her as she breathed her very last.  The moment He stopped breathing life into my daughter and the memory of that moment in time hurts so deeply. A loneliness as I'd never known entered into my world. The loss of our precious Ashley Kate emptied me.  Every good part of me spilled out and some days I wonder if it will ever come back.

I miss her.

Every day.  Still.

 I want to scream at the whole world each time I step out to be in it.  I want to scream for it to STOP.  To notice. To realize what it lost and what heaven gained.

Our hearts were changed in that moment. Our faith was tested.  Our dreams were shattered.  Our family fractured.  Every day is hard.  Some harder than others, but every day is hard. I've yet to wake up and make it through an easy one since Aug.29th.

I force myself to move.  Force myself to take on projects.  Force myself to volunteer.  If I didn't force these things upon myself I would never leave my room.  I force myself to smile.  Force myself to care.  It feels as though my whole world is fake because the inside of me is so different than what the outside portrays.  It wears  me out.  Physically, emotionally, spiritually.  All the pretending.

I sit and watch as they construct her final resting place and each day I see that they are getting closer and closer to moving her there.  The rage and emotional strain in my heart at the sight of progress is indescribable.  How I wish I could stop this.  How I wish I could have saved her.  Spared her.  Taken her place..I could not. Loving her was not enough.  It just wasn't enough.

Its senior night at the ballpark. As I prepare to stand next to my 18 year old as we honor him and his closest friends, my heart will break for all he lost two days into his senior year.  It will break because he knows as well as I do that the most amazing, most precious, and most beautiful of little sisters will not be there next to us on that field.  We will make it through tonight just as we have made it through all the other special nights of the last 7 months of this senior year, but it won't be without tears.  Not because he is finishing his final high school season, but because his biggest fan wont be there with him.  Her picture is in his locker...her pink pirate jersey is hanging in the club house...her initials are embroidered onto his hat...her name stitched into his glove...and he wears a charm around his neck that says "Ashley"... he won't be able to high five her tiny hand at the end of the game, but I know he's keeping her as close to his heart as he can.

I miss her...and...so does he.

Congratulations Blake...we are so very proud of all you have accomplished, of the man you have become,  and of the big brother you were to her. She loved you more most.

3/02/2014

Its so "Ashley"



Each day we think of you sweet Ashley Kate, each day we remember your smile, your laughter, your intelligence, and your beauty. As Pine Tree Pirate Baseball varsity take the field tomorrow they will do so in remembrance of you by wearing a small AK on their hats. We will forever remember you sweet girl until we meet again. J.M.  February 19,2014


Our hearts were deeply touched by the kindness extended toward our family and our senior through this act.  Each time I sit behind that chain link fence and see those big guys running out on the field with the tiniest of symbols in the pinkest of pinks I can't help but think of our girl. With tears in our eyes and a smile on our faces. 

 Its just so "Ashley".  

Thank you so very much.  

2/27/2014

Truth

The daily struggle to breathe continues.

I have no desire to wake up in a home that she no longer resides in.   I have no desire to step out into a world she is no longer a part of.  I fight the urge to "quit" my life and all it consists of every moment of every day. I lay in bed at night and cry and tell Dave how very much I just want to quit.

I'm exhausted from the pretending. Exhausted from faking it. Exhausted from it all.  Exhausted from hearing how I should move on..accept the hand God has dealt... Look for joy again... Blah, blah, blah.   It's not often that I'm totally honest with anyone anymore because my honesty is uncomfortable for most.

There are no words that could ever describe this place, these feelings, the horror of helplessly  watching the deteriation and suffering over her last 29 days on this earth. The nightmares never cease. So forgive me if i want it to stop. Forgive me if im being too honest today.  I just dont feel like pretending today.

I miss Ashley Kate. I miss everything about her. I miss who she was.  I miss who we were.

Truth. Sometimes it's painfully ugly. I've been breathing for 6 months without her and it hurts as much this Thursday morning as it did that Thursday morning.


2/06/2014

How are we

I don't know how to answer.  This question is asked us so often and we don't have an answer.  At least one that is acceptable.  One that people want to hear us say.

We are sad.  Angry.  Hurt.  Broken.  Lost. Confused.

 Those are truthful answers.

Instead we say this, "We are trying."

It seems acceptable to most, except it feels like such a lie when spoken.

We still cry.  Daily.  Every single day since she left.  Nothing in our life makes sense anymore.  We did what we thought He had called us to do and yet still He took her back.  Away from us.  It makes me wonder if we did it wrong.  I'm sure we did.  There were never any easy choices.  Obvious answers.  Clear decisions.  It was a nightmare of flailing our way through the unthinkable.  We loved her so deeply and wanted so desperately to protect her.  In the end there was no one anywhere who had any ideas how to help us help her live.  We felt abandoned by everyone.  Left alone to love our beautiful little girl and hope beyond all hope that somehow she would be spared.

I could write a book...volumes... on the horror of living life in hospitals, ICU's, and transplant centers.  I could write of the beautiful encounters as well as the ugliest of interactions between families and staff.  I could.  I never will, but I could.  For every amazing, loving, compassionate professional who ever crossed our path there were just as many hateful, cold, unkind, and simply clueless ones as well.  I've never been hurt more in my life than the intentional lack of compassion or care shown toward us at her passing.  Not a call, a card or an email from doctors, transplant coordinators, or hospitals with whom she grew up with and in.  I don't understand how anyone could be so calloused toward the death of a child.  Ashley was pure joy, beauty and innocence.  She was.  Not to acknowledge her passing was beyond cold.  Still for all those who ignored the loss of our daughters life there were those precious nurses who loved on us all those years that continued to love on us in those dark moments after she left.  I'll forever love them for the kindness they showered on us while they cared for her and for the kindness showed to Dave and I after we lost her.  I love you girls so much.

I feel as though I die a little more each day.  Its a good thing though and not a bad.  The thought brings me comfort knowing that we truly do die a little each day because I know it brings us one day closer to her.  As a mom its my job to know where my kids are, who they are with, make sure they are ok, cared for and safe.  Its those instincts that make the separation from Ashley Kate so very hard.   I know who she is with because the Bible tells me.  "To be absent from the body is to be present with the Lord."  Still that knowledge does not take from us the longing to have her with us.   It does not erase the pain of being separated from her.  I don't know what she is though.  I know that every part of her that we held, and kissed, and touched, and cared for is now gone and that knowledge is so very painful.  More painful than my words could ever convey to you.  She is no longer her beautiful self with long brown hair, rosy cheeks, twinkly eyes, tiny nose and soft pink lips.  Those things have passed away and I miss them so much.   I don't know what a soul or a spirit looks like.  I don't know who she is any longer and I don't know that I would recognize her now if I were allowed to see where she is.  I know that she is ok because the Bible tells me that "there shall be no more pain".  I'm thankful for that.  She doesn't hurt.  She is not feeling pain.  She will never hurt again.  Not from a dressing change, a blood draw, an infection, a surgery, or organ failure.  Still I wish she were here with us and I know that I will grieve the loss of her until the day I myself leave this place.  The tears will only then cease because He will wipe them from my eyes and there will be no more death or sorrow or mourning.  These thoughts make me feel as though I'm going insane.  Trying to figure out who and what and where and how she is daily is maddening.  I miss her so very much.

How are we?

 Still I don't think I've given you the answers you want to hear.

Blake received a full scholarship to a great baseball program and he is looking forward to continuing his baseball career.  He used great wisdom when choosing where to go and how he wanted to proceed and we are so proud of the man he is.  His senior year began with loss of his biggest fan and as he prepares to take the field for his last season of high school baseball without her in the stands my heart breaks for him.  He loved her deeply and feels the loss of his baby sister daily.  He took a photograph of her smiley face for the top shelf of his locker and he sees her every day that he walks into the club house.  He is surrounded by a group of friends with whom he has played ball with since he was 6 years old and they keep him laughing.  His girlfriend is a beautiful young lady who has stood by him though the final days of Ashley's life and continues to love him and take care of him through the loss of her life.  I am so grateful he has her.  He loves her and she is a blessing to us all.

Allie has continued to live life fearlessly.  She amazes us daily with her fierce drive.  Her heart broke the moment she said her final goodbye to Ashley Kate.  She has experienced a loss so deep that few if any of her friends understand.  There are a few who continue to stand by her, take care of her, cause her to laugh, and encourage her to keep on keeping on.  I love those few girls so very much for sticking with her.  There are hard, hard days and there are also good and happy days.  She was in the homecoming court for the sophomore class this year.  She was stunning that night as she stood on the field.  She wore a tiny silver ring on her finger with the initials AK. She is playing soccer and is just a few short weeks away from her junior year of cheer tryouts.  I find it so hard to believe that she is preparing for her junior year on the squad.  She will turn 16 on the 22nd of this month.  She is beautiful and independent and strong.

How are we?

Dave and I are struggling.  If I'm honest with you thats the answer I can give you.  We both are in the depths of grief and we are finding that grief is an individual process.  We don't grieve the same way.  Its so very hard.  We know we are committed to each other and to our family,  but that doesn't make it any easier.  Some days we cry.  Some days we don't speak.  Some days we hide.  Some days we stay so busy just so we don't have to do any of the above.  We are finding our way through this dark time the best we can.  We both miss her deeply and feel the loss of our baby every moment of every day.  Life will never be as good as it once was and that realization is nothing short of excruciating.  We had this amazing life.  Not easy, but amazing.  We were happy and fulfilled raising our children together.  Now we are trying to figure out who we are without Ashley Kate.  Trying to figure out how to forgive ourselves for the choices we made for her that didn't work out the way we had hoped and prayed they would.  Its not easy.

For those of you who have been loving and patient and understanding...not judging us...not writing off our friendship as we walk this difficult path...not giving up on us....I want to say Thank you.  We love you and appreciate your support.  Even if you don't understand how we are getting through this...even if its not the way you think we should be doing it...we appreciate you allowing us the time to figure out our everyday.  We are far from being in a good place, but I guess I can say "we are still trying."

1/23/2014

The moment she left us something inside of me broke.  I can't explain to anyone what happened.  I don't understand how to put into words what happened to me that morning.  I just know that I am broken.  Forever broken.  Changed.  I am not who I was.

Every single morning I open my eyes and tears spill onto my pillow.  I lay my head down and close my eyes each night and the tears spill from them.   Throughout each day tears run down my cheeks. I drive down the road and the tears fall.  I sit at soccer practice and cry so hard I can hardly breathe.  I watch Blake play ball and wipe the tears from the brim of my eyes hoping to catch them before anyone sees them fall.  The only time I don't cry is when I sleep.  I struggle to make it through each day.

God gave us the most amazing gift.  8 years and 29 mornings later He took her away.  I don't know why.  I don't understand.  I just know that He broke my heart the moment He allowed hers to stop beating.   I always knew I could not change His plan.  No matter how many prayers were prayed or what words were or weren't spoken...His plan was His alone and I was helpless to change the course of it.  I had just hoped that His plan would allow her to grow up.  To stay.

I don't know who I am anymore. I am so lost.  I was Ash's mom.  It was who I was. It was what I did every day.   I'm no longer her mom.  She was the best part of me.  The best of all of us.  We aren't us anymore.  We are broken and fractured.  No longer whole. My days are long and empty.  I miss her so much.  I miss her laughter...  Her joy. Our home is so empty.  Its so quiet.  We all miss her presence in our lives.   More than anything I miss being her mom.

Dave and I both agree that it gets harder every day.  It doesn't get easier and anyone who tells you that it does is lying.  As the days without her in our lives stack on top of each other we realize that the world kept going without her and it hurts so very much.  Each date on the calendar causes more pain. We talk about her everyday.  She is so much a part of who we were that we can't figure out who we are supposed to be without her.

Occasionally a letter will arrive or a message will be sent and I'm so very grateful to know that someone thought of her that day.  They remembered her.  They didn't forget that she was here.  I'm so grateful to those of you who take the time to let us know that she is on your heart.

People wonder how we are doing.  I don't write or share it often because there is no happy ending here.  We get up each day because of  Blake and Allison.  If it weren't for them I know I'd never get up again. We are there for them.  We are at their games.  We are involved. We attend all of their activities. We are still good parents.  We just happen to have broken hearts.

This is so very hard.