Just a few things

I'll mention just a few issues she struggled with through the night and this morning.  She is going to the hospital at noon for blood.

Discomfort in several areas.  Teeth. Ears. Tummy.  Spleen.  Bottom.

I suspect she has several infections.  Ear, UTI, and line.

Her blood counts are critically low.  Lower than I've ever seen her hemoglobin or hematocrit.

She's struggling to breathe from the enlargement of her spleen.  I think its putting a lot of pressure on her internally making it difficult to inhale deeply.  She's taking short, grunting breaths.  Her vitals are all stable. Oxygen is good.  Its just not easy breathing.  She needs more blood and we are hopeful this will allow her breathing to ease up.

Swelling.

Fever.

Ash just doesn't feel good.  There is not a lot more I can say.  As soon as the blood bank delivers the blood we will leave.  We are hoping to get some IV antibiotic coverage started quickly.  I imagine she will require at least two units of blood today.  Hopefully she will make it home sometime late tonight.

4 days until our baby gherkin turns 8 years old.  10 days until the celebration of those 8 years.  Baby steps.  Small goals.  Making it through one day at a time.

Really bad day

Today was a bad one. Ash has felt awful since the moment she woke up this morning.  I tried everything I could to help her feel even a little better but nothing worked. I would characterize today as her worst so far. My heart is so very sad. I don't even know what to say other than saying it was a bad day.

I'm going to bed with a heavy heart and teary eyes. I'm just so thankful that she was able to fall asleep.

Kissing my Girl Last Night

Blake and I made it home  yesterday after a long and wonderful tournament experience.  The last 12 days have been a brutal schedule on the guys and their parents, but  I'm so,so glad to have been there with him as he  finished up an amazing summer of  baseball.  Tomorrow we will travel four hours to an evaluation camp and then he is finished for the next 4  weeks.  I'm not sure what  we will do with those four weeks, but I know his body could use a break.

I came home to our sweet Ashley Kate and was instantly transformed back into the status of our "real world".  Dave and I have both experienced being away from her for a few days at a time this summer and we decided that although the being away is difficult and worrisome it shocks us to our core the moment we step back inside our home to see her.  When we are with her day in and day out I think we kind of get used to (if that is even imaginable) the appearance of our little one.  Its not so shocking when we see it every single day, but the very minute you come in from being away from her it frightens us all over again.  She looks pretty bad.  As much as I hate to admit that, its very true.  She is swollen, bruised, and discolored.  Its so hard to see her look like this.

As I kissed that precious girl of ours goodnight last night the tears rolled down my cheeks as I told her over and over again that, "Daddy loves Ashley Kate, and Mommy loves Ashley Kate, and Blake loves Ashley Kate, and Allie loves Ashley Kate, and Jesus loves Ashley Kate."  She closes her eyes and listens to me say the very words I've said to her every single night and I wonder if she even understands what I've told her?  I can't get all the way through my words without the tears falling.  I wiped my fallen tears off her cheeks and walked down the hallway to my room...to the quiet, secret place where I allow all my brokenness to spill out.  I do not know how many days the Father has planned for us to keep our baby, but I cherish every single one of them.  She is so, so precious to our hearts.

Ash is feeling quite yucky these days.  She sleeps a lot.  When she is awake she is coughing, struggling with an odd mucous that has developed the last couple of months that comes with no explanation as to why she has it.  It causes her to throw up often.  Multiple, multiple times a day and through the night.  I know its making her miserable and yet none of her doctors have any suggestions for helping her clear it up.  I don't know if its related to the disease process or not.  I do know that its miserable. Her lungs are clear though ad for this I am incredibly thankful.  If she were to develop a pneumonia right now it would be disastrous.  She carries a constant low grade fever.   She still has a toothache that she complains of daily.  From what we can see its an eyetooth that has broken through the gum and has caused a swollen area that is hurting.  I don't see it making any progress as far as coming all the way in though and I think its struggling because of the breaking down of her cellular structure.  Its making her hurt and she asks us to push on it many times each day. I wish the little issues that have begun to come up would all go away so she didn't have to struggle with them on top of the big issues too.  Her ears are causing her to complain.  She's getting headaches too.  Her skin is beginning to change in texture as well as the color.  She is bruising so easily and they aren't healing because of the breakdown of her blood cells.  Just the way she holds her ipad has caused a nasty bruise on her arm and when I discovered it I'll admit that it scared me so much.  Each little thing that is happening adds up to the overall problem being that her liver and her spleen have stopped doing what they were designed to do.  

She doesn't sit up and play much anymore.  She does watch her favorite movies and she does enjoy her ipad, but other than that she's pretty still.  We drive with her daily.  Whatever she asks we pretty much try to make happen.  She doesn't ask for much other that to drive and see her "rooster".  I know the owners of that restaurant must think we are crazy.  We sit in front of that rooster with our windows rolled down and wave, and talk, and sing silly songs we've made up to entertain our sweet girl and bring a smile to her face.  I've driven by that rooster by myself on occasion and it makes me cry every single time.  I don't know why she loves that thing so much, but it makes my heart hurt to see it.  There are moments that I cry my eyes out and I can't explain why.  I'm a mess.

I could talk forever and ever about the ins and outs of what life is now like and how we are trying to prepare for the days ahead.  Honestly, its just too hard to think about it all let alone write about it.  I do know that now that baseball has finished up that Dave and I do plan on taking the older kids out one night very soon and talking with them about the really, really hard things we just haven't been able to yet.  The thought of this hurts so very much.

After tomorrow I will be in full out party mode around here.  We have lots of little details that we are finishing up as we work our way toward the 10th.  Its the little details that take so many hours and hours of work, but its also the little details that I love the most about her parties.  When it all comes together my heart smiles knowing we created yet another celebration of her life.  Our house is covered in party stuff.  Almost every room has something stored in it.  There are so  many fun things that make me smile when I look around.  I'm looking forward to celebrating her 8th year.  I feel so blessed when I realize we have been given 8 whole years with our baby gherkin.

Thank you so much for your prayers and your kind words.  I read every single message and I cherish you words of encouragement.

Reflection

I lie awake tonight in a hotel room a few hours away from home and my mind refuses to shut its self off and allow for sleep to come.  I've had a hundred different memories come over me and a hundred different situations play out in my head tonight.  Reflection is a powerful thing.  Something I desperately wish could come to us on the front side of things rather than the back side of them.  If only we could see and know what the results of our decisions would be before we make them.

I believe the single most important decision we ever made was the day we decided, or rather the day we determined, to stop living in a hospital and start living at home with Ashley Kate.  As the memories flood over me I realize that I don't regret one single day we spent at home with her.  It was a conscious choice we made to allow her to grow up outside the walls of a hospital room and to choose quality over quantity.  I remember knowing without a doubt that enough was a enough and it was time to just give her the chance to be a little girl.  I fought hard for the right to bring her home.  I fought for every day outside of the walls of a hospital.  I fought to give her life...a normal life...a life where she lay her head down on her own pillow, in her own bed, under the roof of her own home.  Looking back, reflecting, I don't regret that choice.

I believe the single most detrimental decision we ever made was to jump on the first call we received for organs and not waiting long enough for the approval to begin the Omegaven trial in Boston.  Both things were going on simultaneously in our journey and I think our judgement was clouded by the fact that we were told our time with her was going to be so short.  We were given a time line of 6 more months at the most in those days and I couldn't imagine not holding my baby girl in my arms for a lifetime.  So...the call for organs came before the approval to go to Boston and we chose transplant.  Looking back, reflecting, I regret that choice.  I regret making that choice at that time.  Not to say that transplant would have never been the right choice, just to say I think perhaps had we gotten the approval to begin and try Omegaven first that we might be living a different story today.  Things were so different back then.  It was a brand new trial.  A brand new study. If I were asked today by a parent facing similar situations I would wholeheartedly encourage them to try Omegavin first.  No question about it. I truly believe pre transplant on Omegaven is an entirely different outcome than going on it post transplant with a donated liver.  

Its so very hard to know what is right and what is wrong when you are watching your child lose the battle for their life.  Our tiny baby gherkin was losing the battle and we didn't know what to do.

I lay awake at night searching for answers, solutions, threads of hope, wondering if there is anything we haven't yet tried or heard of or discovered that could possibly reverse the state of her dying liver.  I wake every morning with tear stained cheeks because my attempts the night before were futile.  I know of nothing that we can do.  I know of no one who can help us.  When the doctors stop calling its even worse than when your phone is ringing because they are calling.  At this time no one even calls anymore to discuss her labs.  No one even has suggestions or options or tests they want run.  My heart breaks when I realize they have all realized that the battle is being lost and there is nothing left to fight it with.

Everyone tells me not question or doubt the decisions we have made for her.  Its harder than that.  It truly is.  I do question and I do wonder and I do doubt.

If Ash could have kept her native liver I think our story would be so different.  If Ash had more line access I know her story would be different today.

I've asked myself what changed our minds a million times.  Its in the late night hours that I found the answer to that question.  In remembering and reflecting on the experiences.  I remember the exact moment, the exact place, the exact person we were talking to, and the exact words being said to us that caused me to stop...reverse my thinking...and lose faith in re-transplantation.  In those moments I lost all faith in the process, the team, the procedure, and the chances of her survival of it all.  Without the ability to trust the team and the process I lost the ability to try again.  Its taken me almost 3 years to figure out, admit, and voice aloud this experience.  Only to my husband and then to a close friend have I been able to admit and share this experience.  December 29th, 2010 was one of the hardest discussions I've ever been a part of concerning my daughter.  Only to be topped by a couple we are being forced to have currently.

I'm not so sure that it wasn't supposed to happen in this way.  I mean that moment of realizing I could never take her back to transplant.  I feel in my gut today, as I did on that day, that we would have more time with her without another transplant than we would if we had attempted one.  It sickens me to know then and now that without it there would be a death sentence handed to our little girl.  I just tried so hard to get past that awful truth and give her the very best life of quality for the very longest time I could.  Knowing all along that in the end she would never grow up.  I have everyday since then and do everyday still hope for more time...for the ability of her body to just hold on...for that liver to not give up on her...for her life to continue.

If I could just change the circumstances a little bit...I believe the outcome would be so very different.

Our journey with transplant is over and has ended.  I know this partly because of the lack of calls, concern, and communication we now experience.  It hurts so much more when the phone stops ringing.

 Our journey with our sweet Ashley is not over.  She continues to wake everyday and fight in true Ashley style for every breath, every moment, every experience, and every memory she can possibly pack into the life God  is granting her.  I'm so proud of her.  So proud of who she is.  She is the most amazing person I've ever known and loving her has been the best gift I was ever given.

I think its tempting and almost easy to question or judge or say that you might do this journey differently than we have.  Its ok if you feel that way.  I know its hard to understand.  Just KNOW that every thing we have ever done or chosen for Ashley Kate has been out of our deepest desire to love her well and to provide the best life we possibly could.  There are so many things that are just simply out of our control.  We continue to fight for every day, for every piece of normal we can provide her, for every joy we can bestow upon her, and every smile we can share with her.  She deserves nothing less than this and so much more.

Just Because its easier...

Its easier to show you pictures of my precious girl than it is to share right now.  She has good moments throughout her day to day and capturing those moments are what I'm concentrating on. There are plenty of ugly, horrible, awful things I could write about, but I'm choosing to focus on her and the life she is still living instead.

That's not to say that I'm not angry, because I am.  I am angry.  I don't know if anyone can understand that and I don't even know if its wrong or not...but I feel angry.  I can feel it inside of me.  I'm not angry at anyone, or at God, or at anything in particular.  I'm just angry.  My heart hurts and my baby is dying...at least thats what they tell me ...so I'm sharing with you that I feel angry.

 Dipping her toes into the pool.

Playing with Allie B. I love, love, love this picture of my girls.

Ready for bed.  If you look closely you can see her g tube is filled with blood.  She bled for 3 days last week.  Some of the scariest days of my life.  She hasn't been bleeding much this week.  I'm so grateful.

I'll close with some specific prayer requests...

1.  Her blood counts.

2. Her tooth ache.

3.  Her bilirubin levels.  It was up to 40 last week.

4.  Her vomiting.  She's been vomiting for days and days and its so uncomfortable for her.

Thank you so very much for loving our sweet girl.  She means the world to us and to know that she means something to you too blesses our hearts more than you will ever know.  So thank you for loving, for praying, and for continuing to come to this place with us.

Remembering what I know is true

I'm trying so hard to remember what I know is true.

I know that God is good.

I know that He never changes.

 I know that if He was good yesterday then He is still good today and He will remain good tomorrow.

When nothing else makes sense to me and I can't understand or see the whys of this moment I remind myself to hang on to what I know is true... He is good.

Today was a better day. I hesitate to say a good day because that is so different now then what it once was, but I can say it was better. Ash did go into the ER this morning because we were going to have to TPA her line and we felt it important to be safe and give her some blood products before. Once she got there though her line opened up and the TPA was no longer necessary. We checked a CBC and found that despite the bleeding she had held her own the last two days and her counts were relatively the same. Since our doctor was out of town the ER doctor was more comfortable not giving her any blood or platelets since she had held steady for two days. It's wasn't so much that she couldn't have used the transfusion but everything carries great risks at this time and so it was decided that it would be better to wait until next week. Her vitals were all strong and despite her constant cough her lungs sounded clear.

She had a long nap this afternoon and then my mom took her out for a drive this evening. She came back and spent some time hanging with her daddy before going to bed. Dave reported to me that she seems better tonight than the last couple of nights. My heart needed to hear a good report and so I'm thankful.

I chose to stay in Dallas with Blake since she had a stable day. I'm not sure what I will do the rest of the time but for tonight I'm here with him.  I was just too tired to make the drive back home and then again early in the morning.  I think I'm ok with my decision but I haven't tried to fall asleep yet. That may not be easy since I'm away from Ashley Kate.

As I read your kind words I feel so comforted knowing how much she is loved. I can never thank all of you enough for loving our girl all this time.  There are moments along this journey that feel so isolating and we feel so lost. Then there are times when I feel the support of thousands of believers who are interceding on her behalf. I'm reminded almost daily of what it looks like to love someone through the eyes of Christ. You are reminding me. I've tried desperately to teach that to my Blake and Allie over the years and now we are on the receiving end of that kind of love. It's so humbling. So comforting.  Thank you for loving a little girl in Texas tonight and for going a step further and loving  on her mommy and daddy too.  We will be forever grateful.

Rough day and night

Ash had a hard day.  It began with bleeding and at 2am it continues with bleeding. I don't know how to put into words the horror of what I feel. Just know that it is shaking me to my core to watch symptoms that I know without a doubt will lead to the end of my daughters life.

She spent most of today resting. This evening she did perk up a little and we took her out back and allowed her to put her feet in the pool. We then took her driving to see her rooster. She had a good evening.  Her daddy laid down with her for a while at bedtime and she went to sleep.  I thought she looked good when we went to bed. A few minutes ago she began throwing up again. It's a mixture of blood and bile. I don't know where the bleeding is coming from. I assume the esophagus or stomach. At this point it doesn't even matter.  We are going to try and get her some platelets today.  Her line needs to be unclothed but Dave and I feel it would be too dangerous with such low platelets. Hopefully he can figure something out this morning with our pediatrician.

I drove to Dallas tonight for Blake's games. Then after a rainout I decided to leave him with another player so he could be assured he would make it to the early game tomorrow. Problem being we hadn't packed him a thing since I had planned on driving back and forth. He is sleeping in his contacts tonight and I'm not sleeping because I'm so worried about him not being able to see for the game. I'm not thinking clearly obviously or I would have never had him stay overnight. I'll be driving back in the morning with a bag of uniforms and fresh contacts for him. I don't have a plan for the next 11 days but feel I need to be able to come home each night for ash.  Things are very hard right now. No one on his team or his coaches even know what is taking place. Baseball is different by this age. It's more than a game... It's kind of like his job. He's working everyday to be recruited and you don't go to your coaches with problems or excuses as to why you can't be at a game. I'm not sure that's understandable to anyone outside the world of baseball, but this isn't little league. I don't even know why I felt the need to explain. I just know I need to be in two places at the same time and I can't be.

Ash is sleeping again and I know I need to try and get some sleep too. It's going to be a long weekend.  I don't think we are losing Ashley Kate in the next few days but I do think that our time is much closer to running out than it was a week ago. The circumstances are changing and we are having some rough days and nights.  Neither Dave or I feel as though we will celebrate another birthday with our precious girl. She is weeks away from turning eight years old and I'm afraid she will be forever eight.  If we can get her there.  My heart hurts. Deeply.

But...There is STILL Joy

Things are getting harder every day...but...there is STILL joy.

Yesterday was one of the most difficult days we've had on this journey...but...there is STILL joy.

Ashley Kate is beginning to show more and more signs of struggle...but...there is STILL joy.

Our hearts are breaking...but...there is STILL joy.

I can not discuss all the details of the struggle or the particulars of her broken body at this time.  The words won't come and the emotion involved is just too deep, but I can share with you that there is STILL joy.  When she smiles...when she laughs...when she gets that twinkle in her eyes...our hearts swell with such joy that we can no longer be sad.  Knowing that our sweet girl can still, in the midst of the unbearable, find joy keeps us going day after day.

I do have a few specific struggles that I will share with you so that you may pray over them.

 Ashley is at a very, very high risk for infection.  Her ANC is .2 and her WBC are 1.3 this week.  It is not expected for this to improve, but it will probably become even worse.  She is currently struggling with a toothache, an ear ache, a cough, and a headache.  These are her daily complaints that she is able to share with us. Any and all of these issues have the potential to take her from us.  Silly I know to think that a tooth ache could actually take her from us when she has overcome so much, but this is our new reality.  Yesterday I spent over 2 hours with her doctors and one of the main topics discussed was infection.  It is very, very possible, and even probable that a small issue may bring us to the end of her journey.  Your prayers over these things would be greatly appreciated.

Another great concern is her inability to make blood.  She is at great risk for bleeding out.  We have seen her begin to bleed on a few occasions, but so far it has resolved after a few hours.  This morning she is bleeding from her stomach into her g-tube and drain bag. She is also throwing up blood.  Ashley's platelets are very low this week.  Because of the enlarged spleen due to her liver failure the spleen is "gobbling up" her blood cells.  This include platelets and WBC.  Platelets give her ability to stop a bleed or allow her blood to clot.  The WBC fight infection.  Her blood issues are very, very serious at this time.  We can continue and will continue to support her with blood transfusions, but there is nothing we can do to stop her spleen from destroying it.  This is another area you could pray over for her.

Bruising is our other issue at this time.  The "trauma" from simply lying on her pillow to rest is causing severe bruising underneath her skin.  We have to be very, very careful when touching, moving, changing, or dressing her.  We were even told that kissing her goodnight may result in a horrible bruise the next morning.  I can't even explain how painful that is to our hearts.  We of course do still kiss on our baby, but oh so gently.  We have asked that no one other than Dave or myself or Blake or Allie touch or kiss her now.  I would never deny her knowing how very much she is loved.  We just have to be careful and mindful of her fragile body.

One last request.  Blake has 12 more days left in this summer schedule barring a win in the last tournament.  Thankfully he is playing all 12 of those days in the Dallas area.  I haven't decided how to get through the next 12 days just yet.  The easiest and most affordable option is to stay in the area, but with our current situation I feel I may need to drive it back and forth each day.  Your prayers for safe travel and peace of mind while I'm on the road with Blake would be so appreciated.  He and Allie remain a priority in our lives even in the midst of this journey.  I feel it is important that he has our support right now although he has made it very clear that he understands Ashley is what is more important.  I never want to convey to my teenagers that their lives and their interests are not important to us.  I believe it is vital that he not miss these next 12 days for recruiting purposes.  Its just going to be a hard time for us all, but we will get through it.  My prayer for him is that he can separate his heart and the emotions he is experiencing from his game.  How I would love to have shielded and protected him from all of this until the season was over, but it was just not possible.

I share these things so that you may know how to pray for our precious girl.  I don't share them with you to frighten or scare anyone.  I think it is very important to realize that she is still here.  She is living.  She is not gone. She is home.  She is happy, and silly, and unaware of what is happening to her.  Ashley Kate still finds JOY in the midst of her struggles.

 There are smiles and laughter.  There are tears and sadness in our quiet moments, but around our girl there is only joy.  How grateful I am for the JOY she has brought to us, and the JOY she has taught us how to feel.

The most beautiful sound and New sight

I lay next to Dave in our bed for the first time in more than 3 weeks tonight...we talked...we struggled through some very hard conversation...we fell silent for lack of comforting answers...it was still...quiet...

then we heard laughter spill out of her and trickle down the hallway to our ears.

"That is the best sound in this whole world," I shared with him.

She giggled loudly, uncontrollably, as the joy inside of her came tumbling out.  She laughed aloud twice tonight.  It soothed the ache in our hearts for a moment.  It was like a medicine taking the pain of the silence away if even for just a moment.

I have no idea what she found so funny...so entertaining...so silly.  I just know that my world is right when her laughter is in it.  As it became silent again my heart ached with the thought of how we will ever survive if our hallway becomes silenced never to hear that precious girls laughter travel down it again.  I simply can not fathom a world without my sweet Ashley Kate in it.

Tonight as we drove along with Ash in the back seat looking out the windows we found ourselves in the midst of unbearable conversation.  Painful, angry, confusing, words being shared between two best friends, two struggling parents, two lost souls in this horrible, horrible place.  Its not what we want...its just what is happening.  It hurts so deeply and we have no other safe place to let it all spill forth except for each other.  I will tell you quite bluntly that this sucks.  It sucks that I can not go to Dave and have him make this better.  That I can not depend on him to "fix" or "provide" or "make right" this situation we are in.  It sucks that he has to struggle with not being able to do any of that for us.  Its what he does.  He fixes whatever is broken. He provides whatever we need.  He makes the wrong in our family right again.  He is the husband, the father, the provider, the leader.  He protects us from anything that threatens us.  This struggle is intense.  It is.
While we continued on the drive tonight Ash spotted something.  She alerted us to it and began to sign as much and as fast as she could all that she was seeing outside of her window.  Perspective.  Its what this precious gift of a child gives to us.  We were so caught up in the pain that we were missing the joy of the drive with our sweet girl.  How I fight so very hard NOT to let that happen and yet it does anyway!  We pulled in and parked next to the wall that caught Ash's attention.  It was covered in pictures that had been painted years back by a leadership class from one of the local high schools.  On the wall they had painted all of her favorite things and my girl spotted them as we were driving along.  Joy...beauty...happiness...found outside her window from her seat in the car.  We decided to unload her and allow her to get an up close view of what she was seeing.  She reached and touched the wall.  I looked at her face and the joy and wonder on it as she looked at larger than life drawings of a caterpillar, a lady bug, a tree, a flower, a sun, a butterfly, a snail, a rain cloud.  I sat in the car and the tears rolled down my face as her daddy pushed her in her chair along the wall so she could touch them all.  I snapped pictures on my phone through the window.  I would have missed it all if she had not been in the car tonight.  I would have never slowed down enough, stopped crying long enough, or even cared enough to notice, but my sweet Ashley...she notices...she sees the joy in this world and finds beauty in the simplest of things.  She has always had this ability to notice what most of us would never even see.  I love that about my girl.  I love that God created her in this way.  I have a feeling this new "wall" will be on our daily itinerary as we take our drives.  There are certain places and things we make sure to drive by each and every day for her.  She gets so much joy out of seeing the rooster outside the Regio restaurant, the ABC auto parts sign, the elephant and zebra at the putt putt course, the chicken on the Chick fil a signs, the W on the Whataburger sign and the palm trees they have planted outside, the lobster at Red Lobster, and now the "painted wall".

There are a lot of things about tonight that I don't want to remember and I'm sure will fade in time, but the sounds of her laughter and sight of her little face taking in the paintings on the wall are things I won't ever forget.  If I were writing in a gratitude journal tonight this is what I would be grateful for today.

My BIG kid

I'm going to take a moment this morning to talk about my BIG kid.  He is just that...big!

He has outgrown every member of our family...including the extended members.  He has a big frame, a big smile, and a big heart! Its not so much his size that I want to focus on...its his heart.

The biggest part of this kid is his heart.  I love that about him!  He LOVES his baby sister and she takes up the biggest part of his heart. He is kind and loving.  He is fiercely protective of her and his heart is breaking as we watch the changes taking place in her life.

 A close second to his love for Ashley Kate is his love for the game.

This week Blake received a phone call.

 It was the coach from his very top choice D1 school!  Blake loves this school.  He loves the campus, the housing, the baseball facilities, the everything.

 Blake has a dream of playing college baseball.  It started the very moment he stepped up to the tee at 4 years old.  The very first time he put on a glove at 4 years old.  The very first time he went to practice.  I vividly remember a day at practice years and years ago.  The heat was unbearable and the team had not put forth their best efforts that day.  The coaches were making them run laps around the outfield fences for each error that had been committed.  As the players ran by you could hear complaining, crying, whining, etc.  On the way home I told Blake how proud I was of him that he wasn't crying or complaining as he led the pack around the field.  His response to me that day was this..."Mom, thats why I'm going to make it.  I'm working harder because I'm going to be the one that makes it someday."  He was all of 9 years old that season.  I've never forgotten that day, and hes never taken his eye off his goal.

We don't know what will come of this phone call.  They want to set up a meeting with us to "talk" when we get back from his next tournament.  I am praying that God will place Blake at the right school, with the right coaches, and surround him by the right players, so that he will be squarely planted in the center of God's will.  I am hopeful they are going to make him an offer that allows us to afford him the opportunity to attend this school.  There are so may unknowns going into this meeting.  We pray that God gives us wisdom and direction.  Hopefully the details will all come together for my son and his future.  If this is the school for Blake then it will allow him to be close enough to get home to see Ashley Kate as opposed to him being sent across the country where getting back and forth in time may become an issue.  This is just one of the many  reasons we are interested in this school and this opportunity for him.

Your prayers for Blake and for this opportunity are so appreciated.  I know many of our family and friends have followed his "career" for as long as we've had this blog and I wanted to reach out to you and ask you to keep him in your prayers.  The next 2-3 weeks before the quiet period begins again are crucial to his future.

We are just so blessed and excited that the call came.  So blessed!

Blood

This is my sweet Ash this morning...hiding in her "tent"...playing on her Ipad while receiving another blood transfusion.  She makes her "tents" every single day.  You can always find her in her "tent" and occasionally she will invite one of us into her "tent" to play.  It makes my heart leap each time she peels back the blankets and extends her invitation.  She is still my sweet Ashley Kate and there simply are not words to describe how deeply she is loved.   I stare at her long legs and the length of her body from across the room and I honestly can't believe how grown up she has become.  No longer that tiny baby gherkin we adored, but now this long, legged, little girl whom we can't get enough of.  She is funny and ornery and opinionated and strong and bossy.  I love, love, love her.

This morning she grabbed my hands and placed them against her cheeks.  I held that baby girls face in my hands and declared again and again and again that I LOVED her.  I stared into her eyes and deep into her soul and with my eyes and my voice and my touch I reassured that precious girl of mine that she was loved.  SO DEEPLY loved.

I can not express the beauty I have found in the bags of blood that hang from the pole above this hospital bed.  As the blood drips into her body, giving her life, allowing her to continue to go on, to laugh, to live, to love her mommy, her daddy, her brother, her big sister another day.  There is beauty to be found in this gift.  Because that is what it gives to those who receive it...it is a gift.  Given so unselfishly by donors who will never know my daughter.  Never meet our family.  Never see a photograph of the little girl whose life they are saving.  They just gave.  I don't know why, or what prompted them to give, or how they came to the decision to go the day they did and give the gift, but I do know that I am grateful.  Eternally grateful to each and every person whose blood has ever flown into the veins of my little one.  It is the gift of these blood transfusions that are keeping her going.  Thank you Lord for these donors.  Thank you for them.

Again, we are sitting in the hospital room mere miles from her home, her bed, her playroom, her family.  The kindness, the care, the reception with which we are welcomed on this floor will forever be burned into our memory. As I came into the hospital this morning there were no handicap spaces open and the valet was not yet here.  Someone stepped around the corner and said, "Are you here with Ashley?  They are waiting for her upstairs.  Let me take care of your car.  I'll bring the ticket to you later. " She grabbed my bags as I wheeled Ash to the elevator and lifted my burden.  What prompted her to show me such love?  Such care?  I have no idea, but I'll not forget it.  I won't.  She blessed me.   As I came into the room with her this morning  there sat an orange Gatorade and a cup  of ice for my girl.  Why? Because her nurse knew her, remembered her, and cared enough to go the extra mile for Ash.  It is the smallest acts of kindness that make the biggest impact on our hearts.  The simplest things.  I have learned that it does not take much to let the hurting heart of another know that you care.  One of the biggest life lessons I've come to learn through the life of my daughter.

I just want to take a moment to thank you.  Every one of you who have ever prayed, texted, emailed, sent encouragement, gifts, or support.  Your kindness impacts our hearts.  Daily I encounter the kindness and compassion of others.  For the few hurtful experiences we've encountered on her journey, there have been blessed experiences 10 fold to overshadow those who have hurt us.  Just wanted you all to know that we are humbled by your love and your interest for and in our baby.  We love you all so much.

To my precious Omaha friends, who stepped out of the box and loved on me and my girl... I love you girls.  Each one of you.  I miss you all so much and I think of you often as we continue this journey.  You impacted our hearts day after day and become so much more than "Ash's nurse".  You became my friend.  You opened your hearts to me and my family and shared your families with us.  Your husbands, your babies, your parents, your lives...thank you so much.  How I wish I could see you girls again.

This journey we are on is changing.  Every day its changing, but it is not over.  I have hope.  I hurt, but I still hope.  She's across the room for me hiding underneath her "tent" and so today is a good day.  I'm blessed.

Exhausted...Physically...Emotionally...Spiritually

My "Bigs" at Niagara Falls

We made it home to our sweet Ash this morning at 9am.  After driving 3200 miles, traveling across or through 14 states, playing 6 baseball games, visiting Niagara Falls, Cooperstown and the Baseball Hall of Fame, New York City, and D.C., we pulled into our driveway 13 days later!  We are exhausted!

The trip was so amazing.  To have that many days with my teenagers was a gift beyond description.  We stepped out of the craziness of our world and took the time to laugh, to explore, to experience, and to connect.  It will go down as one of my all time favorite memories ever made. My sweet Allie has decided that New York City is the life for her!  Heaven help us:)  My Blake has decided that there is NO PLACE on earth as good as TEXAS!  Thats' my boy:)  They couldn't have come away with two more different opinions.  I love them both so, so much.   The strain of keeping my emotions under wraps, putting a smile on outwardly, and focusing solely on my two oldest children was very, very difficult.  I cried silent tears daily.  I lay awake each night struggling, but knowing without a doubt that my big kids needed this time investment.  I needed it too.  It was the right thing to do.

Dave and Allie have just left for a four day trip together.  It was his turn to step away from the constant reminder that our lives are falling apart.  He's focusing his energy on our 15 year old and her very fragile heart this week.  I'm so hopeful that we will reap this investment in our children once things begin to really get hard.  Its only just begun and we are so, so afraid of what this will do to our young people.  They love that baby sister of theirs very, very, much.

It has been so very difficult to be away from Ashley Kate.  Kissing those cheeks this morning was the best feeling in the world.

I returned to the same situation I had left 14 days ago.  Perhaps a little worse?  She's struggling today.  Her face is so very swollen that she is uncomfortable.  Her blood counts are critically low again.  She needs blood, but after having back to back infusions two weeks in a row her doctor is hesitant to give her more.  Honestly, none of us know what to do.  We don't know how to proceed or how to take care of her.  Our PCP is calling to consult with the pediatric hematologist we consulted with back in April.  I'm hopeful he can help give us some direction on how to proceed in the safest way possible.  He was very kind and compassionate when I met him and so I'm counting on him to exhibit a willingness to join our team.  In April he was agreeable to consulting, but I didn't hear back from them today.  So...we sit here tonight without a plan, without blood, without much direction.  I'm afraid for her.  I really am.  Her appearance causes me to catch my breath.  The color of her skin. The bruising on her cheeks.  The size of her neck and her face.  I'm afraid of what this all means.  We do know that her liver and her spleen are destroying, breaking down, and tearing apart her red blood cells.  She has such a low white cell, red cell, hemoglobin, hematocrit, and platelet level that we know the organs are in bad shape.

Our PCP is suspicious of the formation of new blood clots. This is his explanation for the new level of swelling in her neck and face.  He thinks that she may have some clots that are colonized with the bacteria that continues to infect her central line.  I don't even know how we would confirm such a diagnosis.  All I do know is that it wouldn't be good. He is trying to set up a mapping of her venous system by the surgeons at Childrens to see if anything has changed over the last couple of years.  The line that is keeping her alive is also shortening her life with each and every infection.

 My baby looks horrible.  Her beauty is fading and my heart is breaking.  I know that must sound so horrible, but she's always been so very beautiful that I could look into her face and allow the awful situations to disappear if even for just a moment.  I don't have that now.  Her appearance scares me and I know it will scare others too.  No one has seen our baby for months now.  They won't be prepared for the changes that have taken place.  My heart hurts so deep.  I'm afraid.

I'm trying to concentrate on her life.  On living every day.  Doing the things that I can do to make her smile.  Whatever they may be.  She will be 8 years old on the 4th of August.  We have prepared such a precious celebration of those 8 years for her, for our older children, and for us. We need to have happy moments to look back on.  I don't want to fail to celebrate for fear of regretting not doing it if I ever have to wake up and face a day that she is no longer in.   I hope our friends, our family, our closest circle can come...look past the awful symptoms that are stealing her from us...and just love on my baby.  She's so amazing.  So very sweet.  I'm so afraid it may be the last time they ever get to spend with her.

Please pray for my baby.  Pray for my big kids.  Pray for Dave and I.  I feel the strain.  I feel the distance.  I feel the pain we both are fighting so hard to suppress.  This is killing us.  I don't want it to destroy who we are, but I fear that it has the potential to do just that.  Somehow we have to manage to keep being us day in and day out while our youngest child is being ripped from our grasp.

3 months will not be enough.  18 months will not be enough.  We wanted a lifetime.  We have fought so hard  to give her a lifetime.

I could write about a thousand different topics concerning Ash' health and still there would be more to write about.  The details are many.  They are confusing.  They are so unfair.  I try not to bring it all here for you all to sort though, but some days I can't help but let a little of it spill out.  Our focus is on her happiness and her comfort at this time.  I can't bear the thought of her suffering.  I just can't.  Your prayers are so, so appreciated and valued.  Thank you from the bottom of my heart for loving Ashley Kate.  It has been my biggest blessing and I hope that loving her has somehow blessed you too.

Ashley Kate

I've looked for what words I'd like to use to share with you all about Ashley Kate, but I simply can't find the right ones. When I begin to write my heart hurts so much.

The best thing I can share about her is this...she's happy.  She truly is.

She's had some good days this week.  She's had some that weren't as good too.  For the most part though I think she's felt ok.  The way she looks doesn't quite match the way she feels.

The biggest changes we've noticed in Ashley Kate are in her appearance.  When I think about it, this is what alerted us a week or so ago to new problems and her lab work confirmed our suspicions that things had begun to change.  I struggle a lot with this.  I've always done my best to keep her looking as normal as I possibly could.  At this time there is simply nothing I can do to make her appear normal.  She looks sick and she looks rough.  I'm having a hard time with recent photographs of her.  I've spent a lot of time looking back at pictures of her this week while I've been away from her and the changes in her appearance cause me to cry.  She looks bad and she's not going to look any better.

She had an examination and eval done this week.  A hard evening for Dave to endure. Not only due to the content, but also because he reported to me that Ashley Kate was naughty.  She was so naughty and she misbehaved worse than he had ever seen her misbehave!  He said it was truly unbelievable.  She wanted to go driving to see her rooster and proceeded to yell and interrupt through the entire visit until the moment she was loaded into the car and the physician had left our house.  Although it is not funny, it does make me smile and it serves as a testament to us that our girl knows exactly what is going on around her and she is still very, very opinionated about those things.   Her spunk and bad attitude are good signs.  There were tough questions and answers. Hard conversations.  Discussing topics that no parent should ever be forced to talk about it.  Its so very hard right now.  So hard. The best news that came to us from this examination is that they do not want to admit at this time.  Its simply not time yet.  She's still too strong and even though her symptoms are changing and her illness is worsening its not time.  When discussing time lines, we were told a very rapid decline...3 months...or on a slower decline... we may have as many as 18.  Their best estimation, which we know is just a guess, 3-18 months.

Wow.  I can't believe I actually typed that.  My heart is pounding and my thoughts are racing.  How is it even possible to keep breathing when you've been told your child is dying and that she may have as few as 3 months left?  My heart hurts so very deep.  I don't have words to describe the pain, the pit, the panic.

I'm done talking about this.  I've got to move on.  Concentrate on her life not her death.

She rode her bike last night.

  Once she was strapped on she took off like she'd never stopped riding.  Dave sent us a video clip of her pedaling along and it was just so funny to watch my girl show her independence.  She was riding along and pedaling and choosing what direction she wanted to ride in. Her little feet just pedaled and pedaled.  I love that girl!  Freedom to go where she wanted, as fast she wanted, for as long as she wanted.

Ash is sick, but she is living.  They tell us she's dying, but she's not listening.  I cry a lot, but I smile too.  I smile because I know my daughter.  I know her will to live. I know her determination. I know her spirit.  I know her spunk.  I know her fight.  I know there are hard days ahead of us, but I also know there are good days still to be lived.  There are.  My sweet Ash is so loved and so wanted.  She won't go without a fight and we won't give her up without one either.

I'm looking forward to heading toward home this week.  We still have 4 or 5 days of adventure ahead of us as we make our way back to Texas and although I'm having the road trip of a lifetime with my teenagers we all miss our baby so very much and look forward to seeing her again soon.

Thank you all so much for your kind words, your prayers, and your thoughtfulness.  It means so very much to us.  I'll never be able to thank you enough for loving our sweet Ashley Kate the way that you do.  

Quick Question for New York Readers

We are planning on going into the city tomorrow and I have NO idea how to do this.  Seriously, I don't even know where to begin.  Any and all advice would be greatly appreciated.  We only have tomorrow to see the sights the kids are interested in(Time Square, Central Park,Statue of Liberty) so I'm wondering if we should use the train system and walk or if we should pay for a red bus tour.  If its doable I'd rather the freedom of being on our own time schedule.  The only thing I know we are doing for sure is not attempting to drive into the city.  We are catching the train and taking a 2 hour trip into the city which will take us into Grand Central Station.  From there we are WIDE open to opportunity and experience.  Any help or suggestions?

I'll share a little about Ash this evening when I have a moment to sit still and compose a few thoughts.  Thanks for your help.

When the Words Won't Come

I'm having a very hard time finding words to share.  There are a thousand thoughts that run through my head daily and yet I can't seem to formulate a clear sentence.

We made it to New York two days ago.  I had 1600 miles to think.  When my teenagers fell asleep... I cried...and drove... and prayed... A lot.

Ash had four really amazing days from Thursday to Sunday.  She laughed and played.  The reports I was getting from Dave and my Mom were that she looked as though she felt better than she had in months.  I could hear her laughter in the background during our phone calls.  Dave sent pictures and video clips so I could get a visual of her smile and hear her giggles.  She's been so happy.  I began to allow myself to relax a little and gave myself a reprieve from the crushing feeling that had been bearing down on me for the last week.

How deceptive.

This morning Ash woke not feeling well.  She was very grumpy and a little bit "mean".  She was emotional and indecisive.  Her labs came back not looking good.  She's sitting borderline for needing blood.  Its already been ordered.  She's been type and crossed.  She will more than likely be receiving it in the next few days.

  She's a little better this evening.  I even talked to her on face time and saw that precious girl of ours smile.  She's swollen, bruised, and yellowed, but she smiles.

She's still broken.  Unable to be fixed.  She's not going to be ok.  She's not ever going to be ok again.

Still I can't help hoping.  Wishing.  Praying.  Dreaming.  I wan't her to be ok.

I could share a hundred different medical issues with you. I could talk about her labs.  I could talk about her color.  I could talk about her bruising.  I could talk about her bleeding.  I could talk about her blood counts. I could talk about psuedomonas.  I could talk about her line.   I could go on and on and on, but I won't.  The details scare me.  They make me lay awake at night.  They cause me to be afraid.  They make me cry.

Despite it all, the ONLY thing I care about is Ashley Kate's happiness.  At this moment Dave and Nan are driving with her.  She's happy to be in the car.  She went to go see her "rooster".  She's happy.  Nothing else matters.  If we spend the next 6 months driving at all hours of the night there will not be a minute of it I regret.  Its what brings her joy.  We can't give her life, but we can give her moments in her life that bring a smile to her face.

I'm doing my very best to not be an emotional mess this week.  Do you have any idea how hard it is to keep smiling on the outside when your heart is breaking?  I'm so conflicted. My teenagers help me to laugh.  They are so fun.  My baby's smile and giggle bring me joy.  My heart is hurting.  Being a mom is hard.  Waking up every day is getting harder and harder.  I want the world to stop.  Time to stand still.  Nothing to change.  I'm praying for birthdays, and Christmas', and memories, and miracles.  I don't know what else to do.  I just don't know what to do.