Ashley's Story

She will leave fingerprints all over your heart

8/04/2016

Celebrating You


Sweet Ash,

 Its August again...August 4th...what should be your eleventh birthday...and yet...your not here.

 Not anymore.

 Still we wanted to celebrate you.

 Your life...who you were...how you lived...and all that you accomplished in your short 8 years in this place.  But...how?  How do we celebrate when our hearts are still shattered from your absence?  How do we celebrate when we can no longer touch you, or hold you, or kiss your cheeks?  Its been so difficult to be separated from you today.  So painful to not see your smile, hear your giggles, and watch your eyes twinkle. I've longed to know you at this age. Who would you be? How beautiful? I hope we honored your memory well today.  I hope we brought glory to the Father with our attempts today.  Our focus was to spread JOY to those around us in celebration of you. Little acts of kindness in memory of the little girl who forever changed us.

Early this morning Daddy and I took a balloon to your memorial.  To the place that we go when our hearts are longing to be close to you.  I tied a single pink balloon around "your" wrist and watched the breeze cause it to slowly sway above your head.  I desperately wanted to be somewhere else with you.   Anywhere else but that place.  I wanted to run to where you are...to where you really are.  I know your soul is not here,  I know its not there because I watched it leave your body as you left for Heaven, I felt your last breath escape your broken body and I kissed your cheeks a thousand times when it did.   But this is the last place I saw your tiny face and so,,,its the place I go.  Its all we have for now,  Its the only place we can go to "see" you.

I've cried a million tears since that moment you left, and I know I'll cry a million more.  My heart broke into a million pieces that morning, and I still find myself trying to pick the pile of it up off the floor. Ive struggled to breathe more days than not.  I've spent so many sleepless nights without you here, desperately trying to remember every feature of your face. You were so, so beautiful and I intentionally tried to make a forever memory of you so I would have it if the day ever came that you were no longer here.

Precious girl of mine I will cry a million more tears but take great peace in knowing that tears no longer escape from your eyes.  I'll pick up the pieces of my broken heart a million times over knowing that your heart will never break again.  I'll fight for each breath and take that on willingly  because I know you will never have to labor for another.  I'll give up a peaceful nights sleep for as many nights as I'm left here because I know you now know perfect peace.  There are no more sleepless nights for you to suffer through.  My pain is great, but yours is no more.  For that I am so thankful.  Your pain is gone, your tears are dry, your heart doesn't hurt, your labored breaths have ceased and you live in perfect peace.  For every moment of eternity you now have peace.  If I had to choose between the pain I feel since you left or the pain you were forced to endure then I choose me a million times over so that your struggle could come to an end.

But I miss you desperately.

 Today,

Tomorrow.

Everyday until my life ends.

 You are so loved.  Still so very loved.  Forever loved...Forever missed...Forever eight.

Happy Birthday sweet girl.  How I wish I could tell you face to face.

12/25/2015

Christmas Time...Again


Missing the moments like this one tonight.
Precious memories.


Its Christmas time

...again

and your not here.

  Its the third Christmas we've spent without you home here with us. How can that be?  I still look for you everyday...I'm still trying to wake from this horrible dream... I still catch myself checking your room as I walk by to see if your resting peacefully.  How can we be celebrating our third Christmas without you already?  It doesn't seem possible.

 My heart aches for you tonight, and I wonder how precious would you be as I tucked you into your bed this Christmas Eve.  At ten years old would your eyes still twinkle and would your giggle still spill out all over us if we could of kissed your sweet face tonight? As I sit by the tree Daddy is asleep next to me on the couch, and the tears are falling from my eyes making the glow of its lights blurry.  More than anything this Christmas I wish I could give him another day with you.  Nothing we want can be purchased and wrapped up to place under the tree, because all we want is to have another moment with you.  Just a minute, another memory, a moment in time to touch you, hold you, and love on you.  If only it was within my reach to give that to him.  Its all he wants.  Its all any of us want.

Sweet Ash, it hurts so very much to be away from you on Christmas Day.

Christmas doesn't feel like Christmas anymore.

We've surrounded ourselves with the memories of Christmas' past and the images brought to mind bring joy to our hearts.  Remembering the times we spent together with you and your brother and sister heal our hurts even if only a little.  We were so blessed to parent the three of you together.  There was joy and laughter in our home.  Our hearts are comforted by the knowledge  that you were loved and you knew it.  You were happy and you showed it.  You laughed and you shared it.   You lived.  Truly lived.

I miss you everyday, but especially today...this Christmas Eve...this night it hurts...deeply.

Merry Christmas Ashley Kate, you are missed, you are loved, you are and forever will be close to our hearts.

  I love you sweet girl, Mommy.


9/28/2015

Ashley's Room

Its been such a long time coming.

 Such a journey to get to this place...this place where I ready to step out in faith and share with the world and with all of you what has been brewing in my heart.

 I'm nervous...a little afraid...and a lot excited.

 Still I think we are ready...

ready to tell you about...



 Please take a moment to go over to our new website at www.ashleysroom.org and look around. Its taken us months to design it, to have the image of her drawn, and to get everything just right, but we are pleased with the final results.  An artist in Malaysia took the image we provided of her and brought our sweet Ash's character illustration to life.  When I look at it I see her.  The big bow reminds me of our beautiful Ash with her long, dark hair.  I can see her in the image, and I hear her laughter spilling out of that big smile.  It makes me feel happy when I look at it, and I haven't felt happy in such a long time.

I have struggled for so long trying to decide what I wanted to do in her memory, and how I wanted to get it done.  I had so many ideas and yet this little idea just never went away.  I came back to it time and time again.  Something about it, about the Pillow Pets, and about the way I felt when I thought of how much comfort they brought to our Ash especially in the final months of her life made me choose this above all else.  

I am working diligently out of Ashley's Room these days.  Overcoming the sting of its emptiness as it fills up with Pillow Pets.  I giggle to myself wondering what she would think if she could see it now. Most days I work with tear stained cheeks.  My mind filled with her memory. My heart desperately searching for a way to make a difference.  I am reminded so often of the little things that meant so very much to me in the days, weeks, and months of those long hospital stays.  The little things that made the biggest difference in our days.  Its those memories that drive me to use something as simple as a Pillow Pet with a tag attached to it that comes from her room to share with a hurting family that they were thought of, prayed for, and remembered today.  Nothing that will change the world, but maybe just a little something that will change a small moment in the world their critically ill child is living in. Its not much, but my hope is that it may be a blessing.  

Selfishly it helps my broken heart to know that somewhere, someone will read that little tag we have attached and say her name today...Ashley...it will be read, perhaps even spoken aloud...and that as silly as it may seem comforts me.  Just knowing she will be remembered helps.  

Already we've been so blessed through Ashley's Room.  I stood in line with two baskets full of pets one day and a total stranger asked me who they were for.  I briefly stated I was purchasing them in memory of my daughter for children who were in the hospital and she insisted on paying for one of the baskets.  

Tears slipped from my eyes.  Blessed...  Comforted...  Humbled...by the act of a stranger.

My mom sent me a text along with a photo of a pile of Pillow Pets she had purchased on Ashley Kate's birthday in her memory.  Again...tears flowed.  No one had ever done anything for her birthday since she left and that simple act in her memory blessed and comforted and humbled me. 

This morning we received our very first request to host a Pillow Pet Drive in her memory.  I am so  blessed.  So humbled.  So excited. 

So although its taken a while to get it right, we have finally done it and now we are ready to share with all of you a little bit about our precious Ashley's Room.  Its a beautiful place.  


 

8/25/2015

Its August Again

Its August again...

I woke to the sounds of the rain.

 A storm moved quickly through.

 The sounds of the wind and the rain outside my window were an echo of the many emotions I've felt in my heart all month.  I lay there listening and the tears in my eyes began to slide down my cheeks.

In those first few moments that I find myself awake each morning my heart skips a beat, and my mind plays quick tricks on me.  Then the realization that she's not really here floods over me and those tears, all too familiar to my pillow, reappear and begin to fall...again.

I fight the urge to come here...daily.  I say a thousand things, share a thousand thoughts, heartaches and memories with myself in my mind every single day.  Things I feel drawn to come to this place and spill out on this screen, but then don't.  I wish I could explain why, but I can't.

As the anniversary of Ashley Kate's death approaches I find myself battling with the loss, the emptiness, and the loneliness of living without her.   The month of August is a long, miserable, painful walk among all of the lasts we experienced with her. She had a beautiful life, but the last 29 days of it were so painful.  The last 13 even more so.  Her body was broken and the memory of those days hurt.   That is the simple truth of all of this...it hurts... it still hurts...it will always hurt.

I struggle with all the decisions, choices, what ifs, and onlys...I'm constantly battling them all.  Forgiving others has never been a difficult task...forgiving myself has been impossible.  It was such a confusing time.  There were no easy answers.  No solutions.  No directions.

I find myself staring, longing for what other mothers have.  Little girls bring a rush of joy and a flood of pain in a mixed up bundle of emotion.  Its so hard not to want what those around me have.  I still want our daughter.  I want to hold her.  Touch her.  Kiss her.  I'm jealous?  I think?  Not sure if thats the right word to describe what rises up in me as I catch a glimpse of an 8-10 year old in the store, at dinner, or on a playground.  I find myself smiling, and staring, and wiping the silent tears that have slipped from my eyes onto my cheeks as I stand frozen in the aisle of Hobby Lobby, or at our table in Chick Fil A.  Its so hard to explain.

A dear friend shared with me this morning that she took her daughter to Ashley's mausoleum. I've never shared where she lay with anyone that I can remember.  I've been waiting for her memorial piece to be completed and placed. I don't know of anyone who has ever stood in that precious space other than the four of us, but oh how precious to know that they took the time to go and to remember our sweet Ashley Kate.  My heart is overwhelmed.


Most people in our lives don't know and haven't known what to say.  Its ok, because I don't know what to say to them either.  We've lost our community, the places we belonged, since we lost her.  One of the most difficult parts of losing a child is not feeling like you belong where you once did.  Of all the many people we once considered our friends in the transplant world, those we've learned so much from...we are no longer a part of their lives or they ours.  We've become their worst nightmare, and I can imagine how frightening we must be to them.    Four days shy of two years since her passing and I can count on one hand those who have weathered the storm along side us.  Two who survived all  the many days that we needed to be silent, the days we needed to scream, the days where the tears fell seemingly without end, and the days were numbness was the only work I could use to describe to them how I felt.  They stuck it out and still do.  They loved her enough and loved us enough to just accept where we were at any given moment.  Whether it be ugly or whether it be beautiful.  I am FOREVER grateful to them for hanging in there.  For loving us all enough to hang on because they felt it was valuable enough to endure all of the awful in hopes of being near us when we remember the beautiful. Thank you so very much for allowing us to hurt.   For not telling us to move on...or that it was time to get over it...or to stop grieving.  Thank you so very much for your willingness to keep trying...to keep calling...to keep texting.. and to keep showing up.

When the occasional letter or email or text comes through it so blesses our hearts.  Some of those who faithfully loved, and prayed, and followed throughout Ashley Kate's life will still share with us that they were reminded of her, thought of her, or miss her.  Priceless are those moments when I discover their words.  Tears fall, my heart is overwhelmed, and I am reminded that she made a difference in this world. I'm reminded she was here for a bigger purpose and  He must have seen that it was fulfilled and then He took her home...to her eternal home.

Its August again and its a struggle.

8/04/2015

Forever 8


Ashley Kate, Forever 8
August 4, 2005-August 29,2013



Ten years ago today our precious gherkin took her first breath.

I wasn't there.

I missed the joy of seeing her come into this world.

25 days shy, of two years from today, our precious gherkin took her last breath.

I was there.

I held her head in my hands and watched as her soul left this world.  I literally felt her last breath as it escaped her body.

The joy, the beauty, the pain, the tears...a thousand times again I would be there.  If asked to do it again and again and again I would answer...Yes!

Oh how I loved her.  How we all loved her.

There are a lot of tears falling today.  A lot of wishing that she were here.  A lot of wondering who she would be at 10 years old.

I don't imagine there are birthdays in Heaven.  No celebrating her life or her special day.  No need to keep track of time, count the days, or years of ones life.  I truly believe she is not any age now.  Not in Heaven anyway.  Things are different there I imagine...and...thats ok.  It has to be because I can't change it. Yet, without understanding the mysteries of who God is and where Heaven is I can't picture her any other way than 8 years old.

I can't help but wonder though who she would have been had she turned 10 years old here with us today.  How big would she be?  How beautiful would she be?  How happy?  How funny?  How ornery?  How would her laughter sound as it spilled down the hall this morning to wake us up?

Ashley Kate will forever be 8 years old.  Never growing up, aging, or maturing.  She will not be 10, or 12, or 15.  She will remain 8 years old in our hearts and in our memories and in our family.  There are no words to describe the hurt that brings along with it.  No words.

There will be no party and no celebrating.  Instead there will be remembering.  There will be longing. There will be a drive to the cemetery where her body lays behind a stone.  The only act of parenting I will be allowed to do for my daughter on her 10th birthday today is arranging the flowers in the vase attached to the place where we were forced to leave her.  There is great pain in that statement.  Great loss.

I never knew how to plan for her death. I just couldn't bring myself to do it.  I didn't know how to. That surprises a lot of people.  People have said to me, "but you knew she would die...how could you not have prepared yourself?"  As if knowing we would one day lose her should have made it any easier. Made it ok.  I still remember the day, the moment, just days shy of her 5th birthday that the surgeon stood before me and said, "She won't grow up.  There is no escaping that.  This has pretty much guaranteed that as a fact. "  I wanted to scream at him.  I wanted him to hurt as much as his words were stinging me.  I cried a lot that day.  So much so that I ran out of tears, and then I just stood by her bedside willing him to be wrong.    

He wasn't.

Three years later he would be right.

 Instead of concentrating on her death I chose to celebrate her life.  Celebrate it on a grand scale!  I was so very grateful for each year, every birthday, and all of her days with us.  I couldn't contain my excitement, and although she didn't really understand what all the fuss was about she did learn that the day she was born was a day we celebrated.  She laughed and clapped and cheered every year as I would begin to sing "Happy Birthday" to her in the days and weeks before her special day.  Precious Ash never planned or anticipated her tomorrows.  She only knew how to live in the moment.  What a beautiful way to live out her days!

Sweet Ash, your mom and dad love you so much.

We miss you and wish that we could be with you to celebrate your 10th birthday.  Its hard not to want you with us because we have never been where you are now.  All we know is the joy that you shared with us while you were here and we long to feel that again.  You were so precious, so beautiful, and so loved.

 We used to lie awake at night and talk about what you would be like on your tenth birthday.  We tried to imagine what you would look like and what all you would have learned.  I wondered how would I ever pick you up with your long legs!  I couldn't picture what life would be like once you were ten, but oh how I wanted to know you at that age.  I wanted to hear your laugh and see your face and hold your hands in mine.  I was looking forward to watching you grow up. I so desperately wanted to know you as you aged.

 Now that you are where you are I wouldn't ask you to come back to us.  I could never be that selfish.  I just wish you hadn't had to leave so soon.  I wish you had never been sick.  Had never known the pain of dying.  Had never left.  Precious girl if I had to choose the pain of living without you or the pain of you still living in your broken body I would choose our pain over yours.  A thousand times over I would choose to hurt like this so that you never knew another moment of pain.  Knowing that you are free from all that hurt you in this world is enough to make the hurt we live with worth it.

 But... I miss you.

 Desperately miss you.

 Everyday.

 Especially today.

Happy 10th Birthday sweet girl.

You are loved.  Forever loved.  Forever 8.




6/04/2015

Miss This



I miss this.  I miss this so much.  Conversations between Ash and her daddy.  I spent most of his lunch hours just observing the two of them.  They had this amazing relationship.  Even though Ash had no understanding of the clock or any need to know what time it was she was very, very aware of the lunch hour.  She knew her daddy would be coming through the door to see her...and...see her he did.  Every day...without fail...she had his full attention and she loved it.  They played and giggled and talked the whole time.  Her tiny hands told him lots and lots and he understood whatever it was she wanted to say.  I look at this serious of pictures a lot.  She is so alive and so real and so beautiful in them.  Happy and vibrant.

I tried to live in such a way that I never took our moments and our days spent with the children for granted.  I have vivid memories of thinking to myself..."Don't rush this.  Don't miss this.  They won't always be here.  Things won't always be this good."  And...even though I slowed down and drank it all in I find myself longing to get those moments back.  Those moments where we had all 3 of the children here in our home.  Growing up, living the mundane moments, laughing, talking, just being under the same roof.  I miss these days desperately.  I miss having them all here.  Knowing they are safe.  I miss watching them all growing up with Ashley Kate.

I saw new images of her memorial and it took my breath away.  We are months away from it being completed, but as they make progress we can see her more and more in it.  I stared at the images they sent and couldn't speak.  There were no words escaping my lips and in that moment the longing I felt to touch my daughter overwhelmed me.  Tears ran down my cheeks and I just stood frozen, and silent, and unable to speak.

As the days of summer come upon me I am so aware of her absence.  I should be knee deep in birthday planning and props and the like.  Instead I stared at the date today and realized that two months from today she would be 10 years old.  How can that be?  How?  She spent her 9th and almost her 10th in Heaven.  Instead of designing invitations today I'm designing flowers to be taken to the cemetery.  Oh how that hurts!  I wouldn't make her leave her home in Heaven now for all the world, but oh how I wish she hadn't yet gone to live there.  Who is she now?  At almost 10 I wonder how much she has changed.  What is she like?  How long is her hair?  How has her face matured? Her hands?  Her feet?  Are they the same or have they changed?  I don't know enough about Heaven and how it works to know if shes a child or if she's different since arriving there.  I wish I could hear her laugh now that she's there.  To be in His presence there should be "fullness of joy".  What does that feel like for her?  What does that sound like as she has a voice and a body that is no longer broken?  Her laughter has got to spill out along the streets of Heaven.  Oh how I hope that it does!

I miss her.  I miss all of her.  All of this.

5/18/2015

Perched


"Perched " here along with a few of her dinosaurs. 

It was a hard weekend for us.  We worked on transferring old videos of Ashley Kate and we discovered some we hadn't seen before.  A treasure for sure, but the longing for her intensified with each newly discovered scene.  She was amazing, and beautiful, and so full of JOY.  

The rain has left us longing for her a little more than what we are used to feeling everyday.  Its been raining for days and days and with that rain the memory of our precious Ash has washed over us all over again and again and again.   The rain causes me to long for her.  I feel an ache for her deep inside of my soul and wish that I could be given just one more chance to love on her.  

I think of her every day.

All throughout my days I miss her.

I see her everywhere. 

The memories of her make me smile and cause me to cry all at the same time.  

Ash loved us.  She loved all of us.  She expressed that love to us in so many different ways, but I have one particular memory of her "saying I love you" to me that stands out above the rest.  I go to it often.  Especially on the days when I'm missing her so much that it hurts to breathe.  I say that often when describing what its like to be without her and I realize that you might not understand what I mean.  Its ok.  A few of you know what I'm talking about, and I'm so very sorry that you understand all to well what it means when I say that breathing hurts now that she's gone. 

 I've never shared this memory here but thought that today I would.  At least I will try as the rain begins to fall once again and the longing for my daughter is pulling on my heart. 





"Perched" Once again.  Her very favorite spot.  



Ash sat on the "perch" in our foyer every single day.  It was her spot.  Just outside the doorway of her playroom and a step down into our family room where we all spent most of our time when we were home together.  It was so normal for me to walk into the room and see our sweet girl sitting there.   I can still see images of her sitting there even now as I type.

  On this particular day I was standing at the couch folding laundry while Ash was sitting behind me on the perch.  We were watching wonder pets on the big TV and I was talking to her about silly things that didn't mean anything to anyone but the two of us.  I looked up from the towels I was folding and saw her pat her little hands on the spot next to where she was sitting.  She was calling me to come over and sit down next to her.  As I got down on the floor and sat next to her she pushed play on her ipad and the youtube clip she had pulled up began to play.  As the music started she leaned her head over and rested it on me as together we watched what she had found. ( I don't know if you have ever seen what I'm going to try and describe.  Since she's left us I've tried so many times to find it again but have been unsuccessful. )  On the screen we watched the opening trailor for a Disney's Oceans movie that had just come out.  The music was beautiful and the narrator was rambling on about some things I don't remember,  but it was the image of what she was wanting me to see that grabbed my heart.  It was a scene in the middle of the ocean, under the surface of the water where they had filmed a mommy sea lion "holding" a baby sea lion out in front of her with her fins.  The two of them were spinning around in circles together as the music played.  I wish I could make you see what it was that she showed me that day.  I know my words aren't doing the image justice, but it was beautiful.  It was loving.  Nurturing.  In that very moment I knew.  I understood what Ash was wanting to share with me.  It was intentional.  Purposeful.  She was telling me what I had longed her entire life to hear her say.   

"I love you mommy."

I have no doubt in my mind that this is what she wanted me to know.  

I'll never forget that moment.  It was precious to me and now it has become priceless.   I sat next to her for a while that afternoon, and we watched it several times as her little head rested on me.  I told her how very much her mommy loved her and as my words were spoken to her she would tap, tap, tap her tiny finger on the screen making sure I was watching the mommy and the baby.  

 You see this wasn't the first mommy and baby scene she had ever wanted me to "stop" and see.  She seemed to find them all.  Some of her all time favorite movie scenes were exactly those...mommy and baby scenes.  Dumbo?  We watched the storks deliver baby after baby to the mommy animals on the train. We watched it again and again and again.  When Dumbo's mommy is holding him with her trunk and comforting him while Baby Mine plays...her all time favorite.  Bambi? ...scenes with his mommy played repeatedly over and over and over again on the screen of her ipad.  Silent tears slipped from her eyes on more than one occasion when Bambi's mommy got shot in the movie.  Just a couple of examples of countless scenes she played throughout the day...every day.

 She was drawn to images of babies and mommies in all of the things she watched.  And so I knew.  She didn't have to say it.  What she didn't have the voice to say to me she had the intent to let me know.  She found a way to say it.  

 She loved me.  

I often sit very still in our family room when I'm home alone during the day.  I look over at her "perch" and I can still see her sitting there.  As much as it hurts to live here without her the memories of her in every space inside our home bring back to us a little bit of her joy.  We see her so clearly here while we go from room to room.  

Taking steps in front of the mailbox...scattering books all over the playroom floor...watching Myth Busters and giggling from her perch...laying underneath the dining room table while I worked on her birthday invitations...banging on the dish wisher and "helping" me load it...watching Rangers games with Blake on the couch...napping in Allie's bed while she worked on her homework...turning off the light switch for me when we left her room every morning(we were so PROUD of her for learning this.  It took 2 years, but once she got it she got it.  It was her job and she was so good at it.  I can't turn on the light with that switch without aching for the weight of her to be back in my arms)... scooting down the hall to our bedroom(I can still hear her coming)...one day I even found her in the game room looking out at the pool!  As I came to pick her up she began to sign "swimming, swimming, swimmg".  She was such a funny girl. It was dark outside and she was trying to hide from me so she didn't have to go to bed.  We  have a thousand memories of her.  They wash over me daily as I go about the house.  Some bring smiles, there almost always tears, and some bring me to feel so close to her and yet so far away from her all at the same time.  

I miss her.

Desperately miss her.  

I wish I could "hear" her tell me that she loved me just one more time.  

On the harder days since she left I try and remind myself that we are one day closer to eternity.  This is but a temporary place we are caught in.  It won't be long.  One day we will see her again...some day.  I reminded Dave at lunch today just as he has had to remind me on several of the days since she went on to Heaven that all of "this"  all of this "stuff" in our world is just noise.  It means nothing.  It will disappear and then we will be there.  We've done the hardest of days.  We've said goodbye.  We've walked away from her stone.  We've done it.  Now we have to do this.  We can survive the rest of this.  Its only temporary.  

Even still though I find us wishing she  were "perched" here with us instead of just the memories.