Confirmed

3 a.m. phone calls always mean the same thing.

Suspicion of line infection...confirmed...gram negative rods...again.

Last Thursday I sat in the doctor's office and was told "she's one infection away from taxing her liver to the point of no return."

I just thought to myself, "Well, what are we supposed to do?"

The longest period of time she has gone without a line infection since the placement of this line in December of 2010 is 5 weeks.  I knew it was just days away from happening again.

I asked her doctor's how much longer we had with her liver in this condition...his answer..."-3 years.  I would have told you it was finished 3 years ago and by all rights should have been."

Not what you want to hear.

I was also informed that yeast doesn't clear.  Both doctors agreed that the yeast infection that grew out of her line on April 1st was still in her line because it doesn't clear with treatment.  They also told me it will kill her.  They said it multiple times.    They expect it to show up any day now and told me until she has 3 months of clear cultures they won't believe its gone and for me not to get comfortable.  It will show its self again and it will show itself fast.

Not a good visit.

Its been a rough week.  Lots of disappointments.  Lots of hurts.  I can't wait for this school year to end and for the summer to begin.  I need some distraction from all that's happening.  I'm ready to watch my son play some baseball and to make some memories with my girls.  We need a break.  If there was any way to pack up and run from life I'd throw my kids in the car and hit the road.  Somewhere quiet, peaceful, and perhaps tropical.

Instead I'll wait for the box to be dropped off and start another cycle of liver taxing, kidney toxic, medications to begin.

The best thing in my world is this...she's smiling today.  Despite it all...she's smiling.

Praying for Ashley

She had a normal day full of laughter. No real indication of not being well. We played ball before bedtime. She came out of the playroom on her own and sat on her "perch". She was funny and animated.

I woke to the sounds of her cries. She is crying out. Screaming. Trembling.

There is no fever. Just discomfort. She won't allow us to touch her and so I'm lying on the floor next to her bed praying for her.  I knew I should have written a little today so people might understand what is probably happening inside of her but it is just too hard. I say probably because no one really knows. They can say what is likely going to take place but our girl sat right in front of them 3days ago and smiled and laughed and played all the while they made predictions.  All I could do was ask " would you do anything more than what I am now?"  Would your decisions be different?"  Can you look at that little face and make decisions differently than this?" She is just SO happy! Most days.

But tonight... She's uncomfortable... Sickly... Hurting... And...I begin to doubt this path we are on. I begin to panic and second guess because I know that one day the smiles are going to cease and its going to be different.  I know that and it's killing me.

So... Will you pray?  Again?  For my sweet Ashley Kate.

Ready to Talk

I sat down this morning thinking I was ready to talk.  I've been fairly silent since this latest episode in Ash's struggle and there are many, many things that run through my head on a moment by moment basis. I've been thinking for a couple of days that I was ready to start talking it out, but I see now that as I sit here I am not.  I just don't feel like opening the flood gates just yet.  Its draining.  Emotional. Exhausting.  I can't do it right now.

She had her first doctors appointment since discharge last week and I will share with you that it was hard.  It really was.  I don't think there will ever be an easy one again.  The conversations are tough to have.  Tough to get through.

I will tell you that Ash is happy.  She is feeling better and stronger every day.  There have been days in between where she was struggling, but for the most part she is just happy again.  Its hard to swallow all the information, predictions, cautions, etc.  when she's laughing and smiling and playing.  Although I know her attitude doesn't change our situation it does however make it easier to wake up every day.  What I want most for her is happiness.  Today...she's happy.  Again:)

Thank you guys so very much for your concern.  Thank you for your continued prayers.  Thank you for your presence.  It means so very much.

A Day well Spent

I spent yesterday, Mother's Day, doing a little bit of everything.  You know all those little things that aren't that special, but thats exactly what makes them so special?  I love those things.  The everyday, mundane, that makes me look at my life and my people and be so incredibly grateful.

To tell the truth we woke up feeling a little stunned and somewhat numb after the most heartbreaking loss I think we've ever had to experience in our little baseball world.  My heart was still aching from it when I opened my eyes and realized that this season was indeed over.  Blake played his heart out and put up two of his most amazing games ever in an attempt to help his team clinch the Area Championship and move on to Regionals.  At the end of the 7th inning the scoreboard read 7-5 and it hurt.  Ya'll I cried.  I cried for my son who gave his all.  I cried for the seniors who will never step on a field again.  I cried for our school because we are losing some of the best kids around as they move on with their lives in just a couple of weeks.  Blake will never again suit up and play a game with these guys and it hurt my heart!  I was so surprised by how much it hurt.  I spent yesterday reminding myself that God has something more in store.  Something we can't see today, but that is coming.  Then as I lay my head down late last night I checked my email and found a letter from the coaches who will be leading Blake for the next 10 weeks and my heart smiled.  Only 18 more days and he will put on another uniform and work one more summer closer to his dream.

After shaking off the numbness we sat down and listened to lesson 4 of the series my brother is currently preaching in his church in Oklahoma.  Guys...it is SO good.  I love having the opportunity to have my spirit fed every morning and evening.  We turn on the lessons and the sermons his church has available online and we learn and grow and become renewed.  What a blessing!  What a great way to start off Mother's Day.

We then left and went to watch Allie play her first indoor soccer game of the season.  She enjoyed it and did well.  I sat in the bleachers and stared at how beautiful she is even when she's got her hair pulled up, no make on, and sweat pouring down her face.  She loves that game and has fought her way back through this knee injury.  She works out with her trainers every morning before school and again in the evenings at the gym.  She's determined not give up on what she loves and I'm so proud of who she is.  Despite the obstacles before her, the negativity she finds herself surrounded by, and the odds stacked against her, she's fighting back.  A life skill I know she will carry with her for years to come.  I'm the support system  Its my job to provide her the best care I can and to cheer her on as she makes her way back.  I love being her mom.

Once we came home we made lunch and I sat and watched my baby as she sat out on the patio and enjoyed  all that surrounded her. ( My heart smiled at the soccer game when the coach came up and asked , "hows our baby?"  See, I'm not the only one who still refers to Ash as the baby.  Our entire home town does.  She will always be "baby Ashley".)  Even after we all came in she was content to sit there and play outside at the table.  What a blessed Mother's Day it was to have my sweet girl here.  I could see her little hands working and signing as the birds came to the feeders and the squirrels played in the grass.  She had a lot to say and my heart was happy.  Blake was stretched out on the floor in front of me.  Allison Brooke was lying on the couch.  I was surrounded by what I love most.  It was the best!  Simply the best day!

As if my day could be any better...I took a nap!  Glorious day!  Dave let me sleep for 3 whole hours.  It was so great!  I woke up to see that the clock said 8pm and I was shocked.  Ashley still needed a bath and we hadn't eaten any dinner.

To round out the day Allie helped me braid Ash's freshly shampooed hair.  I sat there with my girls and thought how incredibly blessed I am.  Life really is a gift and its so full of blessings.  We loaded Ash up and Allie drove us up to Sonic for 1/2 price milk shakes to end the day.  Just me and my girls.

Precious days.  Precious moments.  Precious memories.

A day well spent doing the nothing special that makes it so very special to me.

Surrounded By...

I sit here in our home tonight and find myself surrounded by a million little things that make me happy, and I feel blessed.  I began to make a list of those things in my mind, and it quickly turned in to a list of the million little things that made me happy not just tonight but all day.  Then the list became a list of not just today but all week.  I thought I'd document just a few.

Glitter.  Its everywhere!  Red, green, silver, pink...I've been busy glittering everything you can imagine for Ashley's 8th birthday.  It makes me smile even when I'm picking it out of my teeth!

Flowers.  They have over taken our formal dining room and have even filtered into the foyer.  I love a good party and the only thing I love more than a good party is the preparation for a good party.  It makes my heart happy to be planning an 8th birthday.  I wake up everyday and work on another piece of her party.  Its so fun!

Giggles.  My sweet girl has found her giggle again.  It was lost for the most part of last month, but its here again.  What JOY I feel as I find myself surrounded with the sounds of her laughter.  I find myself stopping to listen to it at all times of the day and into the night.  OH HOW I LOVE MY GIRL!

Bubbles.  Ash asked for bubbles for the first time in at least a year tonight and before you knew it I had filled the playroom with bubbles.  She lay on the floor and signed more and more as they floated down upon her.  It made my heart happy to see her play.  Her smile was so sweet as the bubbles landed on her nose.

Baby birds.  We now have our third nest of baby birds staying with us this spring.  I love them!  I get so attached and then my heart is so sad as they leave our home, but the short time they are with us brings me such happiness.  I love everything about them.  I love to watch the mommy and daddy preparing for them , taking care of them, and then teaching them to fly.  We have captured some sweet, sweet moments with our camera this spring.

Lists.  I'm serious.  I love lists.  I have a book full of them in front of me tonight.  Give me a good list and it can keep me busy for hours as I plan, organize, and re-write them over and over again and again.  The key to a great party is list making:)

Costumes.  The doorways of the dining room are filled with costumes tonight.  I'm so excited!  Looking forward to August 10th a little more every single day.

Baseball gear.  I love baseball because my son LOVES baseball.  Anything that can make him as happy as this game does has got to be a gift.  There are cleats, uniforms, bats, baseballs, and hats strewn about the house this week.  The team advanced to the Area playoffs after an amazing weekend of play and we are so, so happy for them.

Girl stuff.  Teenage girl stuff to be specific.  Shoes, clothes, perfumes, jewelry, hairbrushes, etc.  I love the mess of it all because I love the young girl it all belongs too.  I lay next to that young lady last night because she wasn't feeling well.  As I drew pictures on her back with my fingers my mind was flooded with memories of the little girl she used to be and the nights I used to spend doing that exact thing.  She's a beauty now.  All grown up and figuring out who she wants to be in this crazy world.  I'm so blessed to be surrounded by her.

Spring.  Everything about it makes me feel blessed.  The grass, the flowers, the fragrance, the temperatures, the freshly planted gardens.  I wake up in the morning and get happy all over again as I step out back and see the changes that have taken place overnight.

Family.  I love my family.  Dave, Blake, Allie, and Ash.  Surrounded by my biggest blessings in this life and I am so, so grateful for each and every one of them.

Music.  The relaxing sounds of Ash's favorite CD surround me tonight.  I love the instrumental Christmas Carols that play in her room all year round.   She's been drifting off to sleep to these sounds since we first met her in that NICU all those years ago.  The music brings rest to my soul as I listen to it play and I find great peace in knowing that it plays for her in our home tonight.

I could write forever about the blessings that surround me tonight.

 I could write forever about the fears that try to overwhelm me daily.

 I could write forever and ever about the Father uses my blessings to remind me that even in the midst of the hardest of circumstances He is taking care of me.

 I feel so incredibly blessed in this life.  To have been given our sweet Ashley.  To have known how it feels to truly love someone without condition.  To be witness to the miracle of her life...  Every...single...day...

God is good.  I am surrounded by His goodness.

My bug

I'm sitting here in my bed with this computer on my lap watching the smallest, truly barely more than microscopic, bug moving in circles in front of me.  I'm amazed at how something so small has captured my attention at this hour.  There is no way other than this exact circumstance with the light from the screen behind it that I would have ever seen such a small creature.  As I watch him( I have no idea why I just assume he is a him) move around the screen I've become overwhelmed by the belief that the God of all creation knows exactly where this tiny creature is tonight.  I even happen to believe that He knows not only where it is but also how it got here and what its purpose is.  Funny to me to think that God cares enough about His creation, even the smallest parts of it, to keep up with "my" bug tonight.

Maybe I'm crazy.  Maybe I'm confused about how God works.  Maybe I'm wrong.  I really don't know for sure, but in my world it makes sense to me to believe that God is involved in the details of my life.  Even the small ones.  It helps me feel safe in unsafe circumstances.  It helps me feel loved when my world is falling apart.  It helps me feel close when my heart is lonely as I begin to wonder if anyone, anywhere, has ever been in this place that I am in.

And...maybe I'm really, really far off base with my belief...but...its carrying me at this time.  I'll admit to all of you that I'm tired and I need to be carried from time to time.  My mind is tired, and my heart is heavy, and my being, the inside of who I am, the me part of me,  hurts so deeply when I slow down long enough to try and figure this mess out that I NEED to believe that God knows all about "my" little bug tonight and that if He knows all about him then surely He knows all about my sweet Ashley.  About her liver.  About her kidneys.  About her central line.  About her venous structure.  About her silence.  About her struggle.  About her.

And...

Since He is aware of my sweet Ashley then He must be aware of her mommy and her daddy and how confused we are and how unsure we feel and how lost we are when we stare into the face of the decisions we are too afraid to make. Too afraid to say out loud.  Too afraid to acknowledge.

So tonight I'm going to keep watching my bug and I'm going to keep believing that God knows all about him because I need to believe that.  I really do.  Knowing that He cares about even the smallest of His creation brings me peace tonight as I struggle to sleep.

Reflective

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.