Ashley's Story

She will leave fingerprints all over your heart


Encouraging Hurting Hearts

Not sure if any of you are like me in any way, but when my kids hurt...I hurt.  If someone hurts one of mine I'm ready to pounce, right their world again, and protect like you've never seen.  Unfortunately...I'm supposed to be an adult.  Its not really allowed in the adult world.  Confronting snotty, hateful, unkind, bratty, bullying,  and just plain old mean kids is  not what we are allowed to do.  So instead...

I sit across from one of mine late into the night and listen to the words that come and ache with every tear that falls.

I encourage to the best of my ability and try to make mine understand that in this world, even though it may not always feel like this is true,  "if God be for us then who can stand against us?"

I gently remind that we are to be gracious.  Even to those who seem so undeserving of forgiveness and grace we are instructed to forgive 70 times 7.

I suggest turning the other cheek.  Although its still stinging from the injustice, turn it anyway and offer it up.

Eternity is is so temporary.  A vapor.  It will not last.  Concentrate on the forever and forget the temporary trial.

Pray for those who hurt you.  Those who behave as an enemy...take them to the Lord in prayer.

As you talk to the Father be honest.  He knows your heart is breaking.  He was there.  He knows what the real story is.  He knows the truth.  You answer only to him.  Remember that.  Pleasing His heart is the goal.  Be mindful of how very much He loves you.

To be brutally honest...I say these words to my child more to remind myself what is the right thing to do.  I need the reminder so that I do not take matters into my own hands.  I need to remember to turn this over to  the Lord and allow him to work in this situation.  I will say that praying for someone who injures the heart of your child is one of the hardest things I've ever done.

Sweet girl,

I know it hurts today. I know your unsure of who is friend and who is enemy.  I know your heart was broken.  I'm praying for you today.  I'm on your side.  Know that I've got your back.  You are loved.  You are priceless.  You are precious to the Creator.

 I love you, Mom


Understanding Ashley

I walked past her playroom on my way out the door yesterday and this image caught my eye.  Look at it for a moment.  Do you see what I see?

My sweet Ashley Kate.  She is such an amazing girl.  Trapped inside her world, without a voice, but so very smart.  The thing about my Ashley is that its hard to know just how incredible and how intelligent she is unless you have been given the opportunity to really spend time with her.  To observe her play, her means of communication, her energy.  She is so misunderstood by so many.  Passed by because she is thought to be delayed, behind, mentally deficient.  I beg to differ with those opinions.  She is SO smart.  She just isn't able to communicate it to others who only have a few seconds or minutes to spend paying her attention.

Ashley understands so much of her environment and yet there are things she will never understand.  I can't explain how her mind works, but I know that it does.  For instance, she understands morning, noon, and night.  She knows when its time to get up, when her daddy will come through the door for lunch, and when its time to go to bed.  However, she does not understand the hours of the day.  She doesn't comprehend that 8am is the time she gets up, or that 12pm is when Dave comes home to eat, or that 9 pm is the hour she is readied for bed.  She understands when I say remember when this or that happened, but yet does not know what yesterday is. Although she does know that tomorrow means not today.   She understands the difference between now or when I say not now but later.  Around 11:30 each day she begins to sign for her daddy and his phone knowing that in just a few minutes he will be arriving at home and she will be allowed to play on his phone while he eats.

Ashley grasps much of the world around her, but mainly only the things that surround her in her own part of the world.  She has no understanding of the word sin or what it means and yet I see her do it every single day just as we all do.   She knows Nemo, and Blue, and Bambi by sight and yet she has no idea who Jesus is.  How can this be?  I don't understand it.  She watches DVD's of all of the above, including stories about Jesus, but when I ask her about any of them she can sign the fictional but not the real.  There is recognition of the fish, the dog, the deer and none of the Saviour.  Its so very confusing.

Ashley knows pain.  She remembers well the injury to her little heal and to this day, a full two years later, the memory of that injury is so real in her mind that she is unable to place the fully healed foot flat to the floor to take a step.  The memory of it disables her.  Still she does not remember or comprehend the transplant.  That word has no meaning to her.  The scars mean nothing to her, but her tiny little stoma is of great interest to her and I see recognition in her eyes when  we talk about it.  We talk about her special gift and she knows that is part of it.  She will lightly touch it and point to it on occasion and want me to tell her about the special gift she was given.  She knows the hospital by sight and knows its not a place she wants to go.  We can drive in the direction of any of them and she instinctively knows where we are headed...  Blocks before arriving... and she will tell me she does not want to go.

Ash is an amazing little girl. So happy.  So full of life.  So unique.  She is unlike any other transplant patient I know.  I have never met or heard of another child of bowel transplant who is unable to walk or talk or eat.  Most of our friends have their own struggles, all fragile, all complex, but yet they are able to walk, talk, jump, and run.  Ash doesn't have those abilities.  Oh, I believe she was born with the potential to achieve all of those things.  Just circumstance and error and situation stole them out from under her.  Still there is little room in our lives for bitterness or question.  When you live a life of sincere gratitude for every single breath she takes its hard to concentrate on those things.  We try not to dwell on them.  I'm not saying they don't ever creep into our thoughts as we watch her struggle to step across the room in her walker or see her become frustrated when we don't understand what she wants because they do.

I want so much for her.  I see so much more for her.

Let me explain the picture above.  I gave Ash a few toys to play with yesterday afternoon while I got ready to leave for Allie's game.  I placed a piano, a dinosaur, and a few books on the floor across from her and asked her to go play.  I did not set out this particular book.  The image I stumbled on brought a smile to my face.  She made her way across the floor to her book shelves.  She searched through the hundreds of books and came across the one she wanted.  She took it back to the dinosaur I had placed on the floor and stood it up on end in front of it.  She must of remembered that book when she saw her dinosaur and set out to locate it.  I can't fully explain to any of you why it struck me as it did.  I just smiled knowing how very smart my girl is and smiled as I realized what she had set out to do.  She matched her toy with a book that has pictures that look like that toy.  I called Blake into the playroom to see if his reaction matched my own.  Without saying a word to each other he looked at the display, then looked at me and we both smiled ear to ear.  He got it.  He knew the significance.  He understood.

As I walked out the door I head him say, "I love you are SO smart."


Closing in

At noon today we will be at the 4 day mark for clear cultures. We have 24 hours to go.   I'm trying not to be too hopeful, but its hard when we haven't gotten a call since dropping off the labs with her new blood cultures.  There were some monster bugs(staph, klebsiella, and enterrobacter) in her line this time and to think she may be clear of them after treating for only 2 weeks is pretty exciting.

Ash feels and looks great.  No one who has seen her can believe she has a line infection.  Other than sleeping a little longer than her norm she is absolutely wonderful.  She is happy, giggly, ornery, and all that.

I'd like to slow down long enough to really compose a post and share some of what is on my heart and what is happening in our little piece of the world, but to be honest I'm just too tired.  With Ash's med schedule, volleyball, cheer, two traveling baseball teams, and all the homework and project assignments I'm running on empty.  I'm really looking forward to the fall season and all the "happys" it brings to our home.  We have a 17th birthday coming up in just two weeks and then we will bust out the Holiday decor to make our home ready for the season.  Its our favorite time of year.  Twinkly lights, carols playing, the yummy smells of Yankee candles burning all over the house...its tradition for us to have it all out and decorated by the end of October.  I have more projects planned than time to complete, but it makes us all so happy to be surrounded by all that brings us peace and hope during the season.  Its so worth the late night planning and project completing in order to give our home that special feeling.

So as we close in on the 4 day mark I'd like to put this infection behind her and keep moving forward as we live each day with the knowledge that her life is a gift.  Not promised to any of us, but so very precious that our Ashley Kate is here with us.


Another One

Its never happened to her before.  In all 7 of her years.  Today we were notified of yet another gram negative bacteria in her blood.  That makes a total of three bugs we are currently battling.  Two gram negative and one gram positive.  Really hard for me to comprehend, but its true.  It looks as though two of them came from inside her own body and found their way up to her central venous catheter.  The other is the  colonized staph that reside inside of the catheter and chooses to flair up every once in a while.  I don't know that I ever fully expect to kill it.  The best we can do is treat her when it shows up.

Ash is feeling so much better than she did last week.  She was down for a few days.  Really tired and weak. Not a lot of her smiley self could be found.  This week she seems to be fine.  Completely normal.  So happy and content with life.  Lots of laughter and giggling going on.  I find it hard to believe she has such life threatening bacteria inside of her.

Two of them we have never seen in her until now.  I know better than to read about them, but I also know better than to remain ignorant of exactly what is going on inside of her little body.  I hate to know how dangerous it all is and yet I hate to not know what we are up against.  The reading tonight proved to do nothing but frighten me so I stopped.  No more tonight.  Its enough for me that her presentation is amazing and that she feels better.

I have no idea how long we will be battling this infection.  The last one took 9 weeks of treatment.  I'm so tired after just a few days I can't imagine how I'll be feeling if this is another long course of round the clock IV meds.  I know we will survive it, but tonight I'm just too tired to figure out how.  I've got two more hours until the next med runs and then I'll wait up until it finishes at 3am.  Then I'll have a chance to sleep for 3 hours until its time to get up for the day.  I'm headed to bed for the next couple of hours.  Alarm set for 2am. Goodnight.


Here we go again

The phone rang in the early morning hours...both lumens...both positive for growth...both growing gram positive and gram negative rods.

All I could do was lay there and listen as Dave spoke with the lab and  the thought that came to mind we go again.

Yesterday a friend sent me a text saying, "I wish she could live without a line."  That was all it said.  That one sentence said it all.  My response?

"Life would be easy if that were the case."

I think that pretty much sums it all up.  Our life would be too easy.

I watched Ashley Kate sleeping last night and I stared at her sweet face for a very long time.  As I memorized her face I realized that somewhere along this journey I quit asking questions...quit looking for answers...quit trying to figure her life out.  I quit.  I don't know why.  Maybe I just got tired of trying to make sense out of things that were happening that made no sense at all.

As we jump back on board with the round the clock IV antibiotics and locks I wish that her life could be different, but have come to the place that I know it never will be.  In the grand scheme of it all...its long as she has life.  A life of quality.  A life of laughter.  A life of experiences.  A life of memories.  A life.

She is playing fever free this morning.  I've seen no trembling and she has yet to vomit.  All symptoms of line infection are gone, but we know its still there.  She's not as happy, smiley, funny, or giggly as she normally is. I'm grateful she's not miserable.  I'm not scared when she's sick like this.  I suppose I should be afraid.  I'm just grateful instead.

 I can't change any of this for her.  As much as I wish I could.  At the end of every day I know we are still facing another transplant if there is ever to be a day in her future that she might live without a line.  That is what I'm scared of.

Brutal honesty.  Admitting it.  Saying it out loud.  I am afraid of the next transplant.


All too familiar

I've been watching Ash the last two days...knowing things were not right...the all too familiar signs...she's just not right.

Today the trembling, vomiting, and fevers showed up.

I know the game.  I've seen the routine.  I drew blood cultures at noon.

Now I wait for the phone to ring confirming the all too familiar.  What I already know to be true...but until that phone rings I can't get meds to treat the infection.  Its a process.  The fever warrants the culture...the positive culture warrants the phone call...the phone call warrants the orders for antibiotic to be started.

As always I'm hoping for it to be any easy battle.  Something we can identify quickly, treat effectively and get back to living life as though she has a thousand tomorrows.

 At least I'm hoping for that to be the case.