What Changed?

I've asked myself this question hundreds of times this week in an attempt to...nevermind...I don't even know why I keep asking myself anything.  Nothing makes sense.  Nothing even matters.  Simply nothing.

Just shy of 8 years into this journey, 3 years post ex plant, I've never been able to answer these questions that haunt me.

I watched my son's jaw clench tightly as he drove down the rode and fought back the tears from behind his sunglasses.  I sat across from my daughter at lunch today and watched her tears flow down her cheeks then watched as she ran from the room.  I saw my husband of 20 years tonight, tears burning his eyes, determined not to fall apart, carefully choose each word he allowed to come from his mouth so that neither of us would lose it. I bathed my baby girl, shampooed her hair, brushed and braided it, and used every ounce of my strength to keep myself from wailing as I went through each step of the process.  My heart is broken.  Shattered.  Injured so deeply I fear as though I'll never recover and yet I know there is deeper hurt still to come.  The people in my world, those I'd die to protect, the ones I'd do anything to keep anyone from hurting, are suffering and there is NOTHING I can do to change any of this.

There has been no harder moment to date in my life than the moments we spent in our meeting tonight.  

Does anyone have any idea how maddening this is?

Admitting that to strangers... Realizing, as I'm describing the changes I'm seeing in her, was the single most difficult breath I've ever had to breathe.  Saying out loud the thoughts that keep me awake every night.  Putting it out there, speaking it, hearing myself say it, and knowing its true...I'm reeling from it.  Still, hours later, I'm reeling.

I'm going to share this next sentence and then I don't ever want to talk about it again.  It will be the only time you will ever read these words on this blog.

We met with hospice tonight.

God, grant us a miracle. I'm begging.  Pleading.  Praying.  We need miracles.

Please resist the urge to tell me things like her miracle may come in other ways.  Or that she will be an angel watching over us.  Healing will come to her on the other side.  Please don't share that with me.  Just don't.  It isn't helping.  Its hurting. I don't want to hear it from my parents, Dave's parents, my siblings, our families, or our friends. We will share what we want or need to share or get out on these pages and then don't ask us to talk about it anymore.  Please understand how very difficult it is for us to keep it together.  We still have to wake up everyday and function, go to work, raise our other children, and live...even though neither one of us feels like it.   I hope that doesn't come across rude or harsh.  It is not my intention.  I just can't read or listen to those sentiments right now.  I want Ashley to live.  We don't want this to be ok.  We don't want to know that life will go on.  We don't want to be told that we will survive.

We came home to our little girl this evening and she asked to watch Myth Busters. Ash is still Ash:)  She sat on her "perch" in our family room and giggled her little heart out.  I couldn't help but laugh out loud because her laughter, her joy, her sheer enjoyment, of that stupid show is contagious!  I wondered to myself how we will ever live in this home without those sounds.  God don't ever let that day come.  PLEASE, let her stay.  PLEASE.

I'm desperately trying not to let this all spiral out of control.  I don't want to miss out on a single moment because the pain is so great it overwhelms us.  One minute at a time.  

Ashley is with us today.  Our beautiful little girl is resting peacefully down the hall.  She is home.  She is not afraid.  She is safe.  She is here.  I'm closing my eyes and concentrating on those truths tonight.

Bleeding

One of Ashley's IV pumps alarmed about three thirty this morning.  It was an easy fix, but still woke her up.

 She began coughing and gagging and struggling making it pretty much impossible for her to find sleep again.  I came back to my bed since my mom shares Ash's room and was with her, but listened to her struggle for an hour.  I prayed for rest, sleep, ease to come for her.  I got back up and decided to sit her up to see if I could make her comfortable.  Thats when I noticed it.

Blood.

Trickling from her nose.

The sight of it threw a punch that I'm not sure I'll ever recover from.

I fear the beginning of the end has begun.  It could be weeks, months, years? No one can say.

I lay here for hours this morning scanning back through the decisions.  Years and years of doing my very best to make decisions for my baby and yet I see now that I've chosen to do the wrong thing in hopes of saving her life.  I hate myself for this.

Truly, I detest every part of me as I watch her begin to fail.  HOW I WISH I COULD have known what was the right and what was the wrong choice to be made.

Yesterday I made one of the hardest decisions I've ever had to make.  I placed a phone call.  One that I'm not sure can offer us any help, but I pray that it does.  Dave and I have a meeting Wednesday evening.  We are searching for solutions.  Direction.  Help.

How do I begin to prepare my children for what will prove to be the hardest time we've ever had to face?  I try to gently talk with them.  I try to remind them just how sick her liver is.  They won't talk.  They can't.  They don't want to hear anything negative about her. They can't hear it.  They still have faith that she will one day walk.  Talk.  Go to college.  Find love. Raise a family.  I kid you not.  This is what they believe.  If ever there were two people to have on your side, two people that you would want in your corner, it would be our Blake  and Allie.  They will hear NOTHING other than want they want for her.

Today I will drive with Blake to Dallas for a double header.  I'll drive home tonight. Tomorrow night, after our meeting I will drive back to pick him up because he has another double header Wednesday evening.  I think it will be the first time in all 17 of his years that he will have no one there in the stands pulling for him.  I hate the thought of that.  I seriously do.  He doesn't mind...I do.

Thursday I'm going to do something that many may not understand, but we feel it needs to be done.

 I'm setting out on a road trip with Blake and Allie.  Crossing from Texas to New York.  We had planned on flying, but chose instead to invest the time in the drive.  Invest the time in making memories.  Precious days filled with laughter, and adventure, and time.  I don't know where our journey is headed in the coming days, but I do know that my heart, my mind, my energy is going to consumed with my sweet Ashley.  My big kids deserve to have all of me for a few days.  As hard as it is for me to set out on this journey away from her, I know its imperative that I do so.  So...I'll set my broken heart aside.  I'll put a smile on my face.  I'll love on my teenagers for a few days.  Give them the very best of me that I have left inside to give.  I'll grab the most out of the time I have with them because I think we are all going to need these memories made this summer to fall back on.

I've toyed with the idea of cancelling her birthday party.  I can't bring myself to do it.  I've never failed to celebrate every day of her life and I can't start doing that now.  She's still here.  Still living.  Still smiling.  We managed to celebrate her 5th year of life when all hope was lost as she lay in a hospital bed...3 years later here we are planning yet another celebration.  My heart is breaking, but I fear I would regret not going forward.  I don't want anymore regrets.

I continue on with my everyday life, going through the motions, sitting at ballparks, watching volleyball games, going to the grocery store.  From the outside no one has a clue how broken I am these days.  Not a clue.  Funny how we are all walking around in this world bearing the heaviest of burdens, crushing burdens, and our neighbors are never the wiser.  I'm glad we don't have to wear our shattered hearts on the outside of our chests, but mine does make me wonder which of those around me is hurting too.

I'm bleeding too, but mine won't bring about my death.  My little girls will.

The "One"

I wanted so much for Ashley Kate to be the "one".  You know the "one" who made it all look so easy.  The "one" who survived to live this flawless, healthy life with the aid of her transplanted organs.  The "one" they wrote case studies about.  The "one" they put pictures of on the Donate Life posters.  The "one" who made it...who grew up... who lived a full life.

I wanted her to be the "one" who would stand in front of the crowds and proclaim with her voice and the telling of her testimony just how great our God is.  How miraculous He is.  How gracious.  How loving.  How amazing.  I wanted so desperately for that to be her one day.

Then the day came where I realized she would never stand on her own feet or use her voice to share the story of her life to that crowd...and I accepted that it would need to be another's feet and another's voice that told her story for her...but still...she would be there.  Beautiful, smiling, eyes twinkling, and tiny hands clapping as the entire audience stood to give glory, and thanks, and honor to the God who created our tiny girl.

But...where do you go when your heart has been shattered and the dream you had of your baby girl being the "one" who survived it all, despite the odds, is not going to take ever happen?

Where do you go from here?

OH, how I wish I knew!

Everyday it gets harder. Everyday I search for the answer...

My desire is for my little girl to live as many days as she can with as little suffering as she can possibly endure.  Its always been what I've looked for.  Give Ash the best quality of life I could and allow God to step in and give her the most quantity He was willing to give.  Those desires have not changed, but it is getting harder and harder.  Every single day it gets a little bit harder.

Its been 3 years since the world began to spin out of control for us again.  3 years of struggle.  3 years of questions with no answers.  3 years of seeking and not being able to figure out what is the very best life we can possibly provide for her.

Where do you go when you feel as though every desire of your heart is being ripped from your very grasp?

Today we went to the car.  To see her rooster.  To drive.  To look in my rear view mirror at her swollen, bruised, and yellowed face and wait for those tiny grins to appear.  Every so slight, but oh so sweet.  She's happy.  Its all that matters right now.  She's happy.

I'm desperately searching for right people to help us in this journey.  To allow her to be given the very best care possible and to allow her to remain "free".  Free enough to ride in the car for hours on end.  Free enough to take naps under her apple tree in the play room, surrounded by her favorite things.  Free enough to throw balls in the ceiling fan each night before bed.  Free enough to grant her the simple pleasures and simplest requests of her heart.

  If I can keep her safe, comfortable, and happy then I'll go to the ends of this earth to do just that. Even with my shattered heart.

Prayers NEEDED

Ash is not well.  I arrived home last night to find Ash not well.  She was very sick through the night and this morning we were informed of yet another gram negative blood infection.

The plan for today is to admit for blood transfusions.  Possibly some albumin.  Then to get IV meds on board.

All of this is where we have been many times before, but this time there are new discussions being added to the mix.  Tough conversations with no clear answers or even predicted outcomes.  Our doctors are to the point of heavily suggesting that her line be pulled.  They want more studies, more opinions, more options.

My main concerns are these:

Permanently shutting the door to transplant.  A sure death sentence for my daughter.

Pulling the line and they being unsuccessful in placing another one anywhere in her body and her suffering a slow, decline without the opportunity for nutrition.  A sure death sentence.

There are NO answers at this time.  NO feelings of what we will or can do.  NO indication of what the coming days, weeks, or months ahead have in store.

We need a miracle.  Again. Another miracle.  I'm not to the place of giving up on her future.  I'm just not.

This line has been chronically infected since placement.  It is the reason for the decline in her health this year. Her kidneys and her liver are no longer able to filter and deal with the effects of such strong antibiotics that are needed to treat the line.  The easy thing to do in most situations is to pull out the line.  Its not so easy in our situation because there are no options for placement of another line.

We have been put in the most impossible situation.  We need something good to happen.

At the End of the day...

Its been a tough week.

 Tough because Ashley's labs basically are HORRIBLE.  Tough because there is nothing we can do to fix her.  Tough because despite poor labs she still NEEDS nutrition orders to be written and no one wants to write them because of her labs. Tough because we have spent the entire day trying to get her line to un clot and we can't get anything to work. Tough because we need yet another dose of TPA today since the first isnt working and because of drug shortages we can't get it from the pharmacy.  Tough because it looks like Dave is going to have to go back to the ER for the second time with her today.

Here is the deal...Ashley is sick.  We know that.  Ashley's body is not working.  We know that too.  NONE of this changes the fact that we still have to wake up every day and keep going.  So in lei of this...it would be so appreciated if everyone involved in her care just kept on waking up every day and kept going right along with us.  Its exhausting to try and pull everyone along.  Totally exhausting.  Its frustration like this that pushes us closer and closer toward pallative care just so we can have a group pulling for us and advocating for what is best for her.  Its a scary place to find yourself...pallative care...end of life...it sucks.  Really it does.

At the end of the day I take my cues from my sweet girl.  Despite awful labs, clotted lines, and a broken body...if she is smiling then all is ok in our world.  We will get through this week.  We will get through this day.  We will.  If she's happy then the whole world can just take a back seat to that. She is what matters most to us.  

Oh yeah...she is smiling today:)

Prayers for a functioning line so we could run TPN would be greatly appreciated!

Praying for Ashley again

Ashley's lab work returned some very alarming numbers this week. There are so many things wrong and very little that is right. I have this sick, heavy feeling in the pit of my stomach when I look over them. Her CBC is probably the worst I've ever seen in all seven of her years. Her liver and kidney panels are both a mess. The overall picture tells us that her health is declining rather than remaining stable. My prayer for her is that her little body would just maintain. We know that she can't be fixed. We are hoping for maintenance.

She doesn't show indications of pain. I don't think she is suffering. She still smiles and laughs everyday. She seems happy and so I'm trying not to worry about her but the tears did fall tonight as Dave and discussed where things sit and what can be done. There are no good options. No easy answers. Nothing that comes to mind and helps us know what to do for her.

I expect phone calls this week. Hard conversations coming our way.

I go on the road tomorrow for another five day stretch and then Blake and I leave for a tournament in New York following the one this week in Tulsa. Finding the balance in our lives and raising three kids instead of only one medically fragile child remains an ongoing struggle. It's never been easy when trying to be there for each one of them and its not getting any better the older they all three become.

I just know that I love my kids and I'm trying to be the best mom I can be for all of them. My heart hurts tonight and I feel the panic building inside of me. I'm doing my best to quiet the stirrings of what I don't know for sure and trying not allow my thoughts to overtake me. One day at a time, one hour, one minute, one breath. There are times when that one moment at a time is all that helps me survive.

As always your prayers for my sweet Ashley are coveted. Thank you for loving her so very much.

Father's Day

I could write a THOUSAND words about the father he is to her...but...even at a thousand I fear I would fail to capture just who he is to this little girl.  Instead of writing until your tired of reading I thought I'd show you who he is through my sweet Ashley's eyes.  She is... after all... the expert on telling you with those eyes of hers how very much she loves the man she doesn't have the voice to call her daddy.

If there were ever a gift I could give to him on this Father's Day it would be her sweet voice saying for the first time in her life..."daddy".  How I wish it were in my power to make that happen for him.    

How do I know how Ashley Kate feels about her daddy on this day?  I know because she "told" me so. 

Its the look on her face that tells me how much she loves her daddy.

Its the safety that she feels when wrapped in his arms as he carries her everywhere her little legs can not carry her that tells me how much she loves her daddy.

Its the way she hugs him as tight as her little arms can that tells me so LOUDLY how much she loves her daddy.

Its the sound of her laughter when he whispers and shares secrets with her that tell me how much she loves her daddy.

Its the way she gets to experience this life even though her little body doesn't allow her to go here or there on her own that tells me how much she loves her daddy.  If she's" been there" or been blessed to "do that" its because he made sure she got to.

Its the way she reaches out to touch him that tells me how much she loves her daddy.

Its all the silly moments they share together that tell me how much she loves her daddy.

Its the sweetest moments she shares with only him...the quiet times...the precious squeezes hugs, and "xmo'" that she gives to only her daddy that tells me how much she loves him.

Its the little glances between her and him, the tiny grins, and the loudest giggles that tell me how much she loves her daddy.

Its the way they snuggle up together after a long day and watch Myth Busters that tell me how much she loves her daddy.

I could go on and on and on about the daddy that he is to her and about the way she loves her daddy, the only one she's ever known, the one God chose for her, the one who would move heaven and earth for her.  I could write for eternity and probably never fully help you understand who he is to her, but I won't.  I'll simply say this...Ashley Kate loves her daddy like no other...and I know the feeling is mutual.  Two peas in a pod.  He loves her and she loves him and I for one KNOW how good it feels to watch the two of them together.

Happy Father's Day to the most amazing daddy I've ever seen.  You've given her your all and you've never given up on her.  I love you for that.  Today and forevermore.

Good Day at the Ballpark

Yesterday it was SO hot I thought I was going to pass out!  I'm so serious ya'll.  I honestly thought I wouldn't survive the game.  It was unbelievably hot! By the end of it I had a headache and was seeing spots out of my left eye.  It was that hot.

But...

I'm not hear to talk about that.  I wanted to document and share with our family that Blake was SO blessed yesterday at the ballpark.

He hit well.  In front of the right people:)

 This summer is all about exposure.  Its his last summer to play before graduation and its a big summer for him.  He needs to perform at his best and do well.  I'm so nervous for him at every game.  We have a grueling schedule that includes a lot of travel, but the whole point is to have him seen by the right people.  I know God has a plan for my son and we are praying that if that plan includes a career in college baseball that He will put Blake in front of the right scouts at the right time.  Its Blake's dream (since tee ball) to play college baseball and we have been chasing that dream ever since.  Its been the most amazing journey as we have been privileged  to travel with and spend every weekend since I can remember with him as he does what he loves.

The most awesome thing about Blake and this journey we've been on with him is his gratitude.  He is SO grateful for every thing we do for him.  The sacrifices, the long travel days, the everything...even down to me filling up his water jug for him!  He always shares with me how much he appreciates it all and never fails to thank me for giving him the opportunity to play as we pull up into the drive after a tournament.  This is what makes it such a pleasure to bless him with this life.  He works hard on the field and Dave works hard to provide the opportunity for him to play.  Its been so much fun!

This is the second summer in a row that Blake and I have gone on the road together and the memories we are making together are just such a blessing.  We laugh, we talk, we sweat, we eat, we travel, and we nap!  Boy do we ever nap after a long day in the heat!  Each trying to fall asleep before the other so the snoring doesn't keep us awake!!!

I started the game off feeling disappointed because Blake was the DH and not catching.  I really wanted him to catch.  So I have to be honest and say I was frustrated.  I admit all of that so I can say this...God always has something better in store for us.  He really does.  The heat was unbearable yesterday.  I know without a doubt that had Blake been catching he would not have been able to hit the way he did yesterday.  I didn't know who was there watching the game, but God knew.  I think its SO cool how He is interested in the smallest details of our lives.

Anyway, Blake played well yesterday in front of his "top choice" college coaches and they noticed:)  As well as a professional scout took notice too!  At all of his games this summer there have been several college and pro scouts. As he left the dugout I noticed him visiting with some people and saw a letter in his hand.  One of only two handed out at yesterday's game:)  Blake plays ball with some of the very top prospects for next years draft.  East Texas has some amazing pitchers and four of the very best in the state and one in the top five in the country all play ball with him.  Blake's not a pitcher.  Scouts LOVE pitchers.  They are always looking for pitchers.  Pitchers get the biggest offers from colleges.  Its the name of the game.  I say all of this to make this point...he is being scouted and to stand out when you don't step on the mound and throw a 90+ mph fast ball is a big deal.  He was very cool about it, but did manage to give me an exhausted smile.  One I won't soon forget.

  Who knows if any of this really and truly will mean anything in the long run...seriously, who knows?  The game of baseball is a funny thing...but...for yesterday it was a blessing in his life and we are grateful for the good day he was given on the field.

Now its time to load up and head back out to the park.  Hes got more work to do!

Missing my sweet Girl

I'm on the road tonight with Blake and have been away from our sweet Ash since Friday morning.  While I wouldn't trade this time and the memories being made chasing his dreams I do miss Ashley Kate so very much.  I have a lot of time to sit and think between games and I found myself remembering all the amazing things Ash has experienced in her little life.  As the memories flood over me I grabbed a pen and scribbled my list as fast as I could so as not to forget a moment of them.  I've held on to this list for a couple of days now and the smile that spreads across my heart is so warm and I feel so incredibly grateful that I thought it might warm you hearts too.  So I'm going to share just a little of my list with you tonight.  Its been a great life and God has been so very good to us:)

My sweet Ash...

Went to the top of a mountain and felt the cool breeze blowing

Looked out across an ocean

Wiggled her little toes into the sand

Tasted a snowflake on her tongue

Heard the sweet sounds of a mockingbird

Napped under the shade of an oak tree

Felt the wind blow through her hair while taking those long drives she loves so much

Sat on top a horse and trotted around the arena

Listened to the crow of a rooster

Has been covered in kisses from her big sister... I know how good that must feel

Was warmed by the rays of the sun across her face

Been tucked in under a pile of quilts and drifted off to sleep to the sweet sounds of holiday music

Seen the glow of 7 candles on top of a birthday cake

High fives from her big brother

Stared at a sky full of stars and reached as far as her little hands could reach trying to touch them

Been wrapped in the embrace of her daddy's arms

Covered by the prayers of a thousand saints and believers as they petition her Creator for His protection over her

Played in the sprinklers

Threw out the first pitch of a ballgame:)

Had the cold rain fall across her sweet face and run off her cheeks

Gone swimming in a pool of sparkly blue water

She's met Cinderella and sat on Santa's lap

Felt the unconditional, never ending, undying, love of a mommy

Stood at the very edge of this life and fought her way back again

Survived the unthinkable and continues to survive every single day

My list goes on and on and on...I add a little to it each day as I remember all the good times and some of the bad too.  What blesses me the most is that I was chosen to accompany her on this journey she's on and I get to be the one who witnesses each moment up close and personal right along with her.  I'll never feel deserving of her, but I'll always feel grateful.  Especially on these nights I spend away from her.  Just 5 more days, 5 more games, and then I'll travel home to see her for a night or two.  Can't wait!

Home Today

Today is my day home and I'm so glad to be here.

  We have the busiest baseball schedule we've ever attempted this summer as Blake plays in front of scouts and coaches every week in hopes of finding the right fit for his college experience.  Its going to be fast and furious and packed full of memory making moments with my almost grown son.  It so hard to look into his face and see that our little boy grew up and is now a man making plans for a future on his own.  The two of us will head out tomorrow afternoon and won't make it home again until Tuesday the 11th! Basically that gives me approximately one day a week to work as fast as I can trying to complete the details for Ashley Kate's 8th birthday.

The invitations are complete.  All printed and hand glittered to perfection!  I love them!!!  My mom took on that task and they are beautiful:)  We have 3 of the 9 center pieces finished. The Emerald City is ready to assemble.   One 8 ft by 12 ft mural painted for Munchkinland.  I'll start on another one tonight.  Several tiny details have been completed.  All but one of the items in the gift baskets for our guests are finished.  All hand made!  So fun!  I've glittered crowns and wands and I'm working on spraying axes and tin man hats.  I have one table linen to design and paint, a fence to build, a farm house to finish, and two costumes left to arrive.  The napkins have been started, 19 out of 90 are finished.  I've still got a bicycle to take apart, spray paint, then re assemble.  I have clouds to finish and rainbow chandeliers to make.  As  I look around and see all the many, many pieces we have done or started I get excited and then I look at my list of items left to do and I get a little nervous.  I know by August 10th everything will come together, but with spending 7or8 out of every 10 days out of town I'm on a time crunch!!!  Some days I wish I had unlimited amounts of resources so I could pay someone to design the party for me, but then I know how much we all enjoy creating it ourselves and I realize it wouldn't be the same even if we could afford to pay someone to do it.  So...we work as fast as we can and complete as much of my "wish list" as we are capable of.  Its going to be a great celebration of her 8 years.  I can hardly wait!!!

Ash is feeling ok.  Not great, but not bad either.  She did make the trip to Dallas with us last weekend and we were able to escape the "realness of our world" for a couple of days as we sat at the ballpark and watched Blake do what he does best.  Its the smile on his face, the look in his eyes, and the whole attitude her carries himself with that makes this so worth it.  He is his best self when on the field and with a team.  I'm so very proud of who he is.  He played in all 5 games this weekend.  He was recruited as a catcher for this team, but he was the designated hitter for one game, caught in the next, played right field in the next two, and then third base and catcher in the last one.  Its a roster of 20 guys with only 9 positions on field so to see him on that field in every game blessed my mama heart:)  He has worked so hard to be the player that he is.   Ashley LOVED the travel and as we pulled up in the drive yesterday her tears began to flow.  She wasn't ready to come home yet, but I so needed to be home today.  If it were up to her she would stay in the car forever!

We have another week of antibiotics to go, but so far we have seen no other growth on her cultures past the first two.  I'm hopeful the infection is clearing, but she does continue to maintain a constant low grade fever and that is not her norm.  It seems to be just enough to keep her from feeling good.  The overall picture hasn't improved.  Her liver and kidneys are still struggling to do their jobs effectively, but as long as she's smiling I'm staying focused on her todays.

Thanks so much to every one of you who continue to pray for our gherkin.  She is the most precious little girl and she makes our hearts so very happy.  I love her more than there are words to describe.