Ashley's Story

She will leave fingerprints all over your heart



My mom snapped this photo from the playroom over the weekend.  I'd have to say its fairly reflective of our time spent here in our home as of late, and it happens to be my most recent favorite. Just hanging out with our sweet girl.

 I see her making her way back a little more every day, and the sounds of her laughter once again fill the rooms of our home.  We lay in our bed down the hall each night and listen to her giggles as they spill out of her and when morning comes we wake to those same sounds.  It is pure joy!

We've had a string of four or five days where it seems as though she's feeling better and better.  Yesterday we took her out with us for the first time in months and tested the waters just a little to see if her energy level would hold up.  She did pretty well.  We had lunch out with our parents and then went on to Hobby Lobby to do a little planning for the centerpieces for her birthday.  She laughed and giggled the entire time.  It was fun to have her out and about again.  Her eyes were glowing as was her skin, but I think the joy she exudes takes precedent over her appearance.

She continues to love riding in the car each day.  We spend approximately 3 hours a day just driving with her.  She asks to go all day long from early morning to the moments just before she falls asleep.  She's a mess!

Today will be our first look at her blood work in a while.  I say a while, but in reality its only been a week or so.  Compared to the multiple weekly draws we were needing a few weeks back it seems like a while.  I'd like to say that I expect her blood work to be reflective of the same degree of change as her behaviour, but I know better.  I'd love for her liver and kidneys to scream out "we are better, we are healing" but we know that is highly unlikely.  Instead I'll concentrate on her quality of life and the good days she's been experiencing lately and do my best to ignore the ugly numbers and levels that will be posted on that lab sheet.  We did draw some line cultures this morning due to some scary hours over night as she exhibited symptoms of a line infection.  By this morning they had all subsided, but I still believe that there is a bug that was flushed into the blood stream last night while hooking up her TPN.  It took a few hours for her to stabilize, and so I'm fairly confident in saying we will be treating some form of bug shortly.

I receive several texts through the week from friends who are concerned and wondering how I am doing.  I want to assure everyone that we are doing as well as we can.  I won't lie or pretend that I don't have days where I'd like to hide from the world because I do indeed have those days.  I won't hide the fact that most moments when Dave and I find a few rare minutes to talk alone that we don't struggle as we try and figure out what we should do next.  Its hard right now.  Its hard juggling life with illness.  Its hard raising 3 kids when one of them is supposed to be dying.  Its hard to keep waking up each day and going about our business as though everything is going to be ok.  BUT...its easier when shes smiling.  Its easier when shes happy.  Its easier when her laughter spills out with such joy that you can't keep the smile off your face.  Its easier on  these days.  So lately....the last 4 or 5 days have been easier, and I am thankful for the days we have been blessed with.  I want to thank you for being concerned and for caring enough to ask.  It means a lot to us.  My close friends are the ones who have the job of watching me fall apart when they ask how I am.  Unfortunately they have to try and pick up the pieces of my heart when I break down at the ballpark or in the grocery store or a whatever parking lot they see me in.  Most days though I think I'm doing ok.  As long as you don't ask me to much:)

The important thing to remember is this...Ashley Kate is happy.  She doesn't know or understand that her body is broken.  That my dear friends is a gift.  One that I will forever be grateful to her Creator for.  She is not afraid.  She is not scared.  She simply doesn't have the ability to understand.


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