Ashley's Story

She will leave fingerprints all over your heart



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.


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."