Ashley's Story

She will leave fingerprints all over your heart


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 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.


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