Radiant

Her face...her eyes...her smile...her personality...

Trying to find a word to do adequately describe my 14 year old Allie B.

 All I can think of is radiant.

So proud of her tonight.  So proud of her always.  So proud to be her mom.

Congrats my sweet Allie B. on being inducted into the National Honor Society.  You make your mom and dad proud.  We love you.  Keep shining beautiful girl.

The Best Parts of my day...

Waking to the sound of the tiniest girl in our worlds laughter.

Fixing Allie B's hair before she headed off to school this morning.

Listening to Blake say that he loved me on his way out the door.

Feeling Ashley Kate's arms wrapped so tightly around my neck and squeezing me as tight as she could.  In that moment I felt that she loved me.

Watching the most beautiful girl in the world walk across the parking lot and climb into my car after school.
Every day I watch her grow more and more beautiful.  She takes my breath away.

Lying on the floor face to face with my sweet Ash this afternoon.  She reached out and brushed the hair out of my eyes that had fallen across my face.  Such sweetness in that simple act.  Something that I have done for her a thousand times before, but the very first time she had done it for me.

Hearing Blake's truck pull in the drive after practice this evening.  Knowing he was fixing to walk into our home after being gone all day.  His safe place.  The place he comes to rest.  The place he knows will always be here.

Staring at Al from across the room tonight and seeing a smile break across her face as she quietly read.  I wonder what thought crossed her mind in that very moment?

Dancing in the kitchen with Blake tonight.  It wasn't pretty, but it sure was fun.  What a memory!

Catching a glance of Dave watching Blake and I dance like we'd lost our minds.  The smile on his face is one I won't soon forget.

Seeing the blood return from Ash's line slowly trickle into the syringe tonight as I held my breath and prayed that it would.  God is good.

Lying next to Al and scratching her back as she talked about nothing special tonight.  It was such a special time.

Hearing Blake announce for no reason at all..." I love you girls today" to his sister's as the three of them sat in the family room.

Peeking in the rooms of this home tonight and seeing everyone in my world safely sleeping in their beds.  The best feeling in the whole world.

Quietly kissing the top of Dave's head just after he'd fallen asleep.  I often whisper to him how much I love him after I know he's sleeping.  Not sure why I wait.  My little secret.  He doesn't even hear me.

Washing Blake's uniforms and getting them all ready for Friday night.

Knowing that when the world around us seems to get crazy that our world inside this home is secure.


The best parts of my day make up the best parts of my life.

Contact

There are times when those of you who still follow along or who have recently discovered the blog that you leave a comment reaching out to us to correspond with you.  I am truly happy to visit with any of you, but I am unable to see your email address the way our comments are set up on this blog.  If you would like for me to email you a response or answer a question you have asked me in a more private forum would you please leave me your email address in the comment, and then I can email you back privately.

Wendy, I would be honored to listen, visit, or share any of our experiences with you.  You can reach me at this email address:  ashleysorgans@yahoo.com  I look forward to hearing from you.  Or you can leave me your email in a comment and then I'll get in touch with you.

The comments are private.  No longer published for anyone to read other than myself.  They are sent directly to my personal email address.

Because...

there are days when his dream seems so far away and the big game doesn't  go his way...I pray.

there are days when her friends aren't really friends at all and it seems she'll never have a real one come her way...I pray.

there are days when organs fail and the transplanted ones do too...I pray.


I pray he knows that his future is not determined in just one play...

 and that she knows the friendships at this age will come and go as often as the days...

 and that I'll remember as I stare into her sweet face that we were never even promised she'd be here today...


For the three of them, and maybe more so for me...I pray.

I have some really, really great kids.  I really do.

She's SOOOO Grown Up!

Just look at our BIG girl!

Her little denim mini, K-Swiss, and tiny polo tee!

I'm telling you I had NO idea how grown she would look when her daddy dressed her early this morning. One look at her and my heart skipped a beat. Where did our baby go?

I LOVE this little girl. LOVE her more than words on a page could EVER describe. I could totally eat her up. The grin on her face is absolutely precious.

She's amazing. She's beautiful. She's ornery. She's delicious. She's happy. She's bossy. She's almost 7.

Oh...and she still HATES her walker! Just sayin...

In a moment

Still today I can be transported back in less than a moment to the darkest, most frightening days imaginable. It seriously takes only a moment to make my heart ache, my eyes sting, my pulse race. How can a memory become so physically real that it causes changes in my breathing forcing me to sit down, be still, and just stare?

I'm doing some purging this week, cleaning out, going through things that I haven't touched since coming home all those months ago. In the process of simplifying and trying to main stream Ash's very complex life I stumbled across a manila envelope on the top shelf of her closet. I opened it up and was immediately captivated by all the words I found inside. I wish I could be one of those moms who just go with it, don't need questions answered, and just accept what is to come...but...I'm not. I want notes. I want labs. I want surgical reports. I need them. For my own sense of understanding as I try to come to peace with what has happened in her life. The words on the page drew me in and took me back to those dark days. I could feel my hands shaking as I turned page after page and read the surgical notes from those days. It was so frightening to live it with her. Its still so frightening to think we have to live days like those again.

I hate having to remember where she's been. In spite of how far she's come and how well she's doing. I guess its because I know the pain of where she's headed? We've done it before. Lived it. Barely survived it. I can't wrap my mind around being there again. I simply can't.

In so many ways life with a central line is easier for us to live than life with a transplanted bowel. I know it sounds insane, but we are so comfortable with it, so used to it, so ok with it. If ONLY she had more access sites. If ONLY. If she did I can promise you that it would be YEARS and YEARS before I ever even consider another transplant.

Each has its worries and concerns, but with one I at least have some small role in prevention. Infection vs. rejection? At this time in her life I prefer to battle the risks of infection vs. the risks of rejection. TPN dependence vs. organ rejection? I think its easier on this side of it to second guess our decisions, but if I had only known the pain, the fear, the struggle, I think I would have fought harder in those early days for Omegaven and skipped the transplant all together. We just didn't have time We ran out of time too soon.

I don't think about these things as much as I did when we first came home. I have learned to live and to allow her to live without battling the worries on a daily basis.

If you asked me to advise another parent just beginning their own journey I'm not sure I could lead them down the path of transplantation. I'm just not sure I could. Although I know its the reason my sweet Ashley Kate plays just feet away from me now...I wonder if there could have been another way that allowed her to skip all the struggle? I suppose I'll never know, but someday I hope to lay my head down at night and not have to wonder if we should have done it another way.

Funny how it only takes a moment to bring me right back to this place.

Easter 2012

Allison, Ashley, Blake

The Big Kids

Blake, 16

Allison, 14

Ashley Kate, 6

Blessed, blessed, blessed :)

Love my kids! Love our life!

p.s. Thanks Chan!!!

Its About...

Grace...Mercy...Sacrifice...Forgiveness....Resurrection...Eternity... and Hope

Ashley Kate may never run across a field as she races to find Easter Eggs and discover the hidden surprises inside, but she will experience...

His grace in her life.

How it feels to be a recipient of His mercy.

The peace that overwhelms while standing underneath the shadow of His sacrifice.

Forgiveness.

A full understanding of His resurrection the moment she enters into Heaven.

Eternal life with Jesus.

And because of each one of these she will live with HOPE.

I wish you all a very blessed Easter. I pray you are surrounded by friends and family, and that in your lives you know the HOPE that broke down all barriers between a Holy God and a sinful world the very moment He walked out of that tomb.

Happy Easter...He is risen!

There are times...

that I love him SO much my heart could burst! Today I experienced one of those times:)

Blake ran into the house this afternoon to grab his uniform before tonight's game. Ashley was sitting in the family room dressed and ready for an evening at the ball park. As I was coming down the hall this is what I over heard.

"Hey Ash, you sure look pretty! I like your hair. How was your day? Bubbas got to go now, but I'll see you there, OK?"

He didn't know I was standing in the hall listening. No one was around, and he could have very easily ran in, grabbed his uniform off the couch, and ignored the fact that his little sister was sitting there. After all she couldn't answer any of his questions, and who knows if she even understood half of what he said to her. But...he didn't ignore her, and...he did talk to her. He talked to her as if she had the ability to understand every single word. I LOVE the WAY he loves her. It melts this momma's heart to be a witness in our home to their relationship.

If Ashley Kate's life never changed another living souls outlook on this world it changed his and that is worth more than words can say. He's a good guy. No, hes a GREAT guy, and I look forward to seeing what God is going to do with him.

Just wanted to share.

Complicated

I suppose if you stop and think about it for a minute...she is. Its just that...we've been with her for the surgeries, the infections, the failures, the successes, the ups, the downs, the good days and the bad. We are her mom and dad...she's our little girl...so its not that complicated. Really its not.

I've lost count of the number of times we've been turned away because someone...somewhere...at some hospital...or some office...has been afraid of her. It makes me want to yell..."Seriously! Your too afraid to do what it is that you've been trained to do? Too afraid to help us? To help her?"

It gets exhausting. It really does. I just need a team of people surrounding us who see her as a little girl and not a complication waiting to happen before it even does. I need people to step up, be brave, because God knows we are being brave bringing her to you, and just help.

Ash needs dental care. Imagine for just a moment if you lacked a vital organ, and since you lacked that organ, the stomach acids, digestive juices, and bile produced inside of your body backed up into your stomach every minute of every day causing it to creep up your esophagus causing you to vomit this fluid out. It coats your teeth all day long and erodes the enamel and basically eats at them constantly. Imagine how it might feel to have this taking place in your mouth. On your teeth.

Now...Think about that feeling, that really clean feeling you get after you've just brushed your teeth. If feels sooooooo good! Imagine NEVER being able to have that feeling inside of your mouth. NEVER.

Ashley's medical status is complicated. When you mix her medical fragile status with her mental status you have a recipe for disaster when trying to find a dentist willing to step up and do something as basic as clean her teeth for us. We need a dentist willing to work with an anesthesiologist who is willing to put her to sleep. Its called sedation dentistry and its done every single day around this town. EXCEPT...no one will do it for Ash.

I'm sad. I'm frustrated. I'm even a little angry. I'm sooooo tired of it being "too complicated."

Insurance says we have providers in network in this town that are certified to do the procedures we need done...what they don't say is HOW to get them to AGREE to do them. Really? UGH!!!

Ashley's mouth is an infection waiting to happen. Dental care is vital at this point and we've got to get it figured out. I swear I'm not willing to lose her to an infection caused by a bad tooth. Not after watching her fight so hard against all the odds.

I don't view her as complicated. I just see her as Ash. Its time that somebody in the dental field saw her the same way!