Ashley's Story

She will leave fingerprints all over your heart

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.   

5/05/2015

Writing Again


Loving and Being Loved by her was the most amazing gift.

I wish you could have known how it felt.  When she wrapped her little arms around your neck you KNEW what if meant to be loved.  It was real...genuine...unconditional...amazing.  

In those early days, those 16 or so days before we met her, we prayed daily that she would be able to give and receive love.  Our earnest prayer was for her to know how much we all loved her, and for her to be able to love us all back. I desperately wanted her to love Blake and Allison back.   It was the focus of my prayers for our tiny baby girl.  The rest didn't matter to me.  There was nothing they could tell me about her that would make any difference.  She was loved, she was wanted, she was going to be ours, and I wanted her to have the ability to love.  

OH HOW ABUNDANTLY God answered that prayer.  I could have never imagined what it would feel like to be loved by Ashley Kate.  

Its been a little while.  A while since I've shared any thoughts, any moments, any stories,any emotions... or since I've shared anything at all.

There have been so many days that I have stopped myself from writing.  

We miss her.

Every day.

Every thing about her.

 Despite the passing of time we feel the loss deeply.  Tears fall and there are days when we can't speak.  Days when it seems as though breathing takes all of our energy and there is nothing left to say.  There are also days when we talk late into the night about how much it hurts to be separated from her.   How much we miss her.

 I've come to understand that there is only one person in this world who knows the depth of the pain of losing her that I feel.   Only one other who loved her as much as I did.  I lay my head down on the pillows next to his every night and he watches the tears fall from my eyes helpless to do anything other than just allow it to happen.  Everyday we find ourselves laughing, remembering, and crying.  Not a day goes by that Dave and I don't talk about our sweet Ash.  She remains such a huge part of who we are.

You don't move on.

You don't get over it.

You don't.

You breathe, you move, you cry, you exist, and you live because you don't have the power to control life and death, but you never stop missing, loving, or grieving the loss of one of your children.  There is a piece of you that is gone and you feel that emptiness daily.

I'm writing again.

Not for any other reason than remembering and never wanting to forget the beautiful details of her life...her story.  I realized a couple of weeks ago that there were so many things that Blake and Allison still don't know about her story.  They were only 10 and 7 when she was born.  One day as Allie and I were in the car visiting I began to talk about Ashley's birth story and how we watched the hand of God move in our lives during those days.  Much to my amazement she had never heard so much of it before.   Many, many things we had protected their little hearts from.  They were just so young at the time.

 So I'm writing a book for them.

Just the two of them.  Recording the days before she was born, the stories of God moving our hearts toward her, how He brought her to us, and the many ways in which we saw Him show up throughout her life.  My hope is that through the writing of her story our hearts will begin to heal from the hurt we now feel since He took her back.  That somehow the 4 of us might begin to see or maybe even understand a little of what He is doing in our lives now without her here.  As a part of her story I'm compiling all the many messages and letters that have been sent to us over the years.  The stories of how her life impacted others. I want to say thank you for sharing with us over the years.  I have thousands and thousands of comments and messages from you.  We have letters and stories that you have shared.   In 8 years she made more of a difference than I will make in my lifetime.  I want for Blake and Allison to know the many incredible ways that God used their baby sister.  How without ever speaking a word she changed so many lives.  I know that the telling of these stories will inspire and encourage them as they go on to live their lives.  

And maybe somehow in the writing of her story the burden of the guilt I bare will be lightened?

Guilt is a heavy, heavy weight.  I feel it daily.  I struggle with guilt.  Its an ugly little piece of my grief.  It has taken months and months for me to finally admit to Dave how much of it I fight on a daily basis.  Not guilt over how we raised Ashley Kate, or how we allowed her to live her life, or even how we eventually lost her, but guilt over being who I am.  I feel guilty that I'm not this amazing mother who has moved on to do great things.  I feel guilty that I am not an advocate or a fundraiser or an inspiration like so many other moms have gone on to be.  I feel guilty that I have no desire or calling to be or do any monumental things to change the world of transplant, or special needs parenting.  I'm just not that grieving mother.  I'm not.  Much to the disappointment of so many.  I wish I were someone else, or someone more, but I can't make myself  do what I am not called to do.  So I continue to bare this weight, this disappointment, and its suffocating me.

I was called to be Ashley's mom.  I have no doubts about that.  I'll forever know that I did the very best I could with her.  I'll stand before God someday and I know that I will have loved her with every part of me and given my all to Him as I parented her.  He called me to love her and I did.  More than I could have ever imagined was possible I loved her.  The flip side of loving her so deeply is the missing of her even deeper.  The loss of having her in our lives has been devastating.  There is no getting around that.

So I'm writing again.  Not silent anymore.  I will occasionally share some of those stories here.  I will share memories of her too.  I will continue to share our grief as well.     I will share images of her memorial once it is completed and I will share with you details of the charity that is being established in her memory and as part of her legacy.  For those of you who are still here, still loving us, and still supporting us with your encouraging words and sincere prayers we thank you.

 

3/18/2015

Asleep



"But I would not have you be ignorant, brethren, concerning them which are asleep, that ye sorrow not, even as others which have no hope.  for if we believe that Jesus died and rose again, even so them also which sleep in Jesus will God bring with Him.  For this we say unto you by the word of the Lord, that we which are alive and remain unto the coming of the Lord shall not prevent them which are asleep.  For the Lord Himself shall descend from Heaven with a shout, with the voice of the archangel, and with the trump of God: and the dead in Christ shall rise first.  Then we which are alive and remain shall be caught up together with them in the clouds, to meet the Lord in the air, and so shall we ever be with the Lord.  
1 Thess.  4:13-18


I'm sitting by the bedside of my precious dad tonight.  In a hospital room.  Next to his hospital bed.  He had a stroke two weeks ago and I've been here with him for the past two weeks.  I have no idea when I'll be going home.  He's lost so much of what his life was a few weeks ago, but he is stable and I'm grateful he is still here.   It seems surreal to me that I can't seem to escape spending long, lonely nights in a hospital room.  Although I'd give anything to be sitting with my sweet Ash tonight in a hospital room.  Anything.  

I've got a lot of time on my hands while he rests, and I find myself running through the files and files that contain the thousands of photographs of our Ashley Kate.  Memories flood over me and tears pour from my eyes as I remember the day I took each picture.  I miss her so very much.  My heart aches for her.  Its an ache that I don't know will ever be healed.  

In many ways its such a nightmare for me as I sit in this room.  Things that most people don't think much about bring back haunting memories for me.  Things like the pulse ox... images of the last readings I took the morning Ash left us flash in front of me.  The blood pressure cuff...how she hated it, seriously hated to have her blood pressure taken...then I remember how I could find no reading on her blood pressure monitor in the moments before I realized she was leaving us.  This has truly been a very, very difficult time for me.  Still...I'm here...because in what world do you get to say, "I'm sorry this is too hard for me."  Not in mine.  Not when its my dad.  

You see my dad is more than just my dad.  He's my person of sorts.  My friend.  The only true one I've ever really had.  He's the one thats been in my corner every day of my life.  Even on the worst days of my life...never judging...just loving...praying...pulling for me.  He's the one person who didn't disappear over the last 18 months when my grief isolated me, and broke me, and defeated me.  He's still here.  Not telling me what I should be doing or how I'm supposed to be feeling.  He's just the one that says, "Hey, do you know how much your dad loves you?"  You see it was 5 long months that my phone sat in a drawer and I refused to look at it because its silence was a reminder to me that she was gone.  No more labs, pharmacies, hospitals, or doctors calling.  It was just silent.  Not many people kept trying after that length of time(not that I blame them), but my dad did.  Oh, I had lots and lots of people(and still do) telling me who I should be and how I should handle the loss, but only one who simply said, "I just love you...no matter what."

Anyway, as I re-discover old pictures of my precious girl it often sends me searching for scripture.  Scripture I know I've heard my whole life, but now since the end of hers they have taken on new meaning.  Tonight I found this image and it reminded me that her body simply sleeps. What an image.  One of my favorite things to do was to study her face, features, her everything while she slept.  Her beauty overwhelmed me.  Still does.  Now her soul is with the Father and her body is sleeping across town from our home.  One day, whether it be near or far from today, He tells me that He's coming again to retrieve her body along with any who are alive and remain and who have placed their trust in Him.  In a confusing 18 long months of the deepest, ugliest, paralyzing pain I found comfort in these verses tonight as I looked at the image of this beautiful baby that I can no longer kiss goodnight.  

Faith is hard.  I won't pretend that it is not.  When I feel so lost and find myself clinging onto whatever shreds I have left I know that there is a God in Heaven who loves me.  Although it often feels like He doesn't as I wander through this land of grief I have to believe that He does.  In my broken, lonely, isolated state... I choose to believe that He still loves me and patiently waits for me to find my way back.  I don't have the answers I seek, and I don't have any idea if I'll ever be who I once believed I was.  I just know that I keep waking up each day trying.  I can't do much more than that.  Even if I'm on auto pilot navigating my way through this darkest of times. I'm still trying.  I really am.  

3/09/2015

Seeing You




There are pictures of you that make me feel as though I could reach out and touch you.  I find myself reaching for your hair, your face, your hands.  You look so real, so alive, so here...and yet  your are not.  Oh how my heart hurts.

I wonder where you are...how far away you are...I know deep inside of me that you are with the Father, but where is that?  You feel so very far away from us.  Not a moment passes that you are not in my thoughts.  I try and imagine that you are close.  Are you?  What if there is nothing more than a thin veil separating this life we live from the eternity that you are now in?  Are you just on the other side and yet I just can't see you?  Could you be that close to us?  I hope that you are.

18 months have passed since we have touched you. It still doesn't seem real.  There are days we go to your rooms and still expect to see you there.  I walk in the front door and hear the words I used to speak to you escape my lips.  I stand outside the doors to your playroom and imagine you there... playing, giggling, sleeping.  I can't go in...it hurts too much...but I can peek through the glass and remember you there.  Sometimes I catch myself asking daddy to not wake you as he gets ready for work.  Reminding him to move quietly around the house.

Everything changed in our world the moment you left.  Daddy changed.  I changed.  Blake and Allie changed.  Our family is so different now that we are separated from you.  We all feel your absence.  We keep breathing, living, moving...but so much of who we were ended when your life ended.

I so desperately wish that we could just peek into your eternity.  If only we could see past whatever it is that separates us from you.  I close my eyes at night and hope to see you in my dreams.  Your not there.  Some people have shared that they have seen you as they dream, but we have yet to see you.  I have no idea what it feels like to see you running and smiling and playing, but the retelling of those who have seen you makes my heart ache to be the one who is seeing you.  Their words bring me hope that someday I might dream of you too.

We count the days since we have seen you and know that each one brings us closer to you.  How grateful I am to know that you don't ache for us as we ache for you.  There is no time where you are.  You are with the Father and He is outside of time.  One day you will look up and we will be there and it will as though we were never apart.



Time doesn't heal the hurt.  The tears don't stop just because the months are piling up.

You will forever be one of us.  We will forever miss seeing you.

I love you Ashley Kate.  Have always loved you.  Still love you.  Will forever love you.



 

2/22/2015


The first time I saw you I knew.  I knew before they ever told me that you were ours.  I remember stepping into the room and being drawn to you.  Just you.  Not the other two babies in the room...but you.  My heart swelled.  The love I felt for you overwhelmed my soul.  Never have I felt so sure of anything in my life.

  Sweet Ash, there were  no doubts.

  Not for a moment...

  I knew that God was good.

Living without you is crushing us all.  We are trying so very hard to stay together and yet I feel as though your absence is pulling us apart. Is God good?  As I watch us struggle day after day, each in our own ways, I've begun to wonder.

 Still deep inside of me I chant to myself...He is good...He is good...He is good.  Even though it doesn't feel as though He is good...He is good.  He has to be.

I don't feel His presence.

 I don't think He is here.

 I often wonder where has He gone?

 I lay awake at night and wonder where He is...

in those moments when I fail to feel as though He is with us I imagine that He is busy with you.  Silly huh?  I just hope that the reason I can't seem to find Him is because you are being so ornery, and so busy, and so all over the place that He has to spend His time chasing you, and listening to you talk...endlessly... I hope.

  I miss you sweet Ash.  I miss life with you.  I miss our home being filled with your laughter.  I miss your joy.  I miss how you smiled.  I miss how warm your little hands were in mine. I miss kissing your cheeks.  I miss tucking you in.

 Your rooms are empty without you in them.

 Our home is empty without you here.

 My heart is empty.

Tonight I'm wishing that I could whisper in your ear how very much that ... Daddy loves Ashley and Mommy loves Ashley and Blake loves Ashley and Allie loves Ashley and Jesus loves Ashley.

 Just once more.

I knew in the moment that He gave you to us that He was good...I'm trying to convince myself since the moments that He took you that He still is.

I love you sweet girl.  Tonight and every night for as long as I'm left here.



 

1/14/2015

What do I say

I could write forever.

 Write a thousand words for a thousand days and still not say what it is my heart wants to say.

I don't write often, but its not for lack of thought.

I don't write much anymore because I don't believe that I can make anyone who reads these words understand.

And so...everyday I hear myself say,  "What do I say?"

What do I say now that she's gone?

Another child is being ushered into heaven tonight.  At least I hope thats how it works when our children die.

It seems so very wrong that our children spent everyday of their short lifes fighting to live.  What is so easy for most of us came at such a great cost for them.  Transplant life is miserable.  Not many happy endings...a few of course...just not many.  Not us anyway.   Eventually it catches up with our babies and we lose them.

  I'm struggling with assumptions,..struggling to truly believe that an example, a story, a recounting of someone's experience in God's word is to be assumed that it happens that way for all of us.  If so then why couldn't God have just said, "this is how it will be for all of you."???  I read over and over again how Lazarus was carried by the angels to Abraham's bosom and I can only hope that my sweet Ash was carried too.  I've spent many a night tormented with thoughts of what if they didn't come for her and she was alone.  This is just one of the many thoughts I struggle with sharing here for fear that no one could ever understand how I can wonder such things.

My faith has been tested severely the past 16 months since Ashley Kate left this life.  Everything I believe, thought I was sure of, without a doubt would proclaim from the mountain tops, has been swirling around in my head and making sense of it all is not so easy to do anymore.  I think grief has an ugly way of causing doubt and confusion and it leaves us grasping to hang on to truths.  At least thats how it has affected me.

Its been 16 months since I held her and felt the weight of her body against my chest.  How can that be?  Dave shared with me just last night how very hard it is to grasp that this is really how life is going to be.  She is gone.  Not coming back to us.  Even now, 16 months later, we are still trying to accept that its over.  He ended our conversation with these words, " and so all I have left is the hope that we will one day see her again."  Its all there is.

I can't hear her anymore.  I don't know how to explain what I mean by that statement except to say that I lay in my bed at night and can no longer hear the memory of her giggle spilling down the hall.  Its gone now. I know its been gone for 16 months, but I used to be able to hear it.  Along with her pumps beeping and her crying out.  But now I can't remember it any more just by closing my eyes and concentrating on it.  The realization that it has left my memory has wrecked me.

I read that " in His presence there is fullness of joy".  The book and verse escape me now, but I did read it in the Bible not long after she left.  I've kept that close to my heart all these days as I can only imagine what that truly means.  Ashley Kate was joy.  The only example of it I have ever known in my life.  So to read that there is FULLNESS of joy in God's presence does comfort me as I try and imagine what she must feel now as she stands in His presence.  Oh how I hope she laughs.  How I hope that her voice spills out of her with laughter and giggles every day.  Please let her laugh.

What a mess it is to live on this side of eternity... away from your child.  My thoughts are consumed with how much longer, how many more hours, how many more days until we are all there. It hurts so much to know that we are finished parenting her.  To know that we will never again be known to her as her mom and dad.  I believe she will know us, but I do not believe that I will be her mommy once we are reunited.  Again, I can't explain that to you.  Its just what I believe.  8 years was not enough.  It went so fast.

It doesn't get any easier.  It never stops hurting.  We think of her daily.  We miss her desperately.  Never would I ask her to come back, to give up what she has now gained, but the longing in my heart to smell her hair, kiss her cheeks, hold her hands, has not gone away.

What do I say?  I don't say much.  I'm pretty quiet now.  My thoughts are consumed with her memory and my heart is forever broken.

Each day we go through the motions of this life, but never far from our thoughts and never out of our hearts is the emptiness that we were left with the moment she was taken from our lives.  Grieving doesnt end with the passage of time.  You move with it, breathe with it, live with it because you aren't given any other choice.  It becomes a part of you.  A part you hide deep inside your soul so that others can't see.  Its a deep, ugly, painful secret that sneaks up on you as you wash the dishes, drive down the street, walk through the grocery store, and lay your head down at night.  Tears fall silently down your face and no one knows why.  I found myself alone in the house last week, washing dishes, and with the falling of the water from the faucet my tears mingled in a puddled in the sink.  I whispered the words to the song I would sing as Ashley Kate lay there with her hair spilled over into my hands as I washed it each week.  I could see her there so clearly and my heart hurt so deeply,  Blake had come in during this time and I had no idea he was even there until I felt his strong arms wrap around me and heard him whisper that he loved me.  He let me cry.  Didn't try and stop me.  Just let me cry till I could cry no more.  Its not often that they see me fall apart.  Oh how I love these children.  Love how much they loved her.  Love how gentle they are with Dave and I as we struggle through such loss.

Blake and Allie are beautiful people.  They are these amazing young adults who were shaped by the life of a precious baby sister whom they loved deeply.  I see the impact she had on them almost every day.  They will live better, love deeper, and change their part of the world because God chose them to be her big brother and big sister.  She was such a gift to each one of us.

What do I say?

As another transplant child makes his way "home" tonight Heaven feels so very far away.  I pray God holds our children tight as our arms ache for them.  No more pain, or sadness, or fear for either of them.

12/28/2014

Christmas 2014



Daddy and I stood together at "the happiest place on earth" this Christmas and tears poured from our eyes as the photographers took picture after picture for us.  Surrounded by thousands of strangers who were excitedly talking, laughing, and posing, it felt as though nothing else mattered in that moment but the huge hole in our hearts created by your absence.  More than once I found myself wishing you could see what I was seeing and then I would say to myself, "but oh my sweet girl you must be seeing SO MUCH MORE."  My hope is that its true and not just something I'm telling myself to survive the moments that feel as though I won't make it through.