Ashley's Story

She will leave fingerprints all over your heart

9/30/2011

Planning

Our home is busy, busy, busy. Full activity. I love...Absolutely LOVE this time of year.

Give me a plan and a list of things to do and I'm a happy girl. So much is going on. So much happening.

We have a 16th birthday coming up in just two days. HOW does that even happen? If you are a new mom or have a toddler underfoot please trust me when I share with you these words...before you can blink they will be grown. Time goes sooooo quickly. Seriously, it seems like yesterday I was sitting in the middle of his sandbox, expecting Allison Brooke, and listening to my two year old saying, "Wook mommy, wook at this!" Oh HOW I LOVE my son! There is no end to the wonderful, positive things I could say about this child of ours. I could write for the next two days about Blake and still not have adequately described who he is and what an amazing role he plays in our family. I won't do it today, but trust me by Sunday its coming. Today I'm busy working on his birthday plans and getting things lined up and ready to host his very last camp out at his grandparents pond. Its a tradition with him and his buddies. We've been doing the same thing his whole life, with the same group of guys and when asked what he wanted to do to celebrate this year this is what his hearts desire was. So...with tears in my eyes I'm working on it all. Packing tents, sleeping bags, and ice chests. Gathering plastic bats and wiffle balls for the game of the century. Collecting old towels, flashlights, and bandannas for one last round of capture the flag in the woods. I'll drop them all off tomorrow evening and come back early Sunday morning to collect those who are still standing. Then its off to Dallas for a double header on the day he turns 16 years old. In his world life doesn't get any better than that.

Tomorrow Allie has a volleyball tournament. We will spend most of the day over at Spring Hill watching her set the ball for her teammates. Super excited about all that's been planned for her 8th grade team. A sponsor had tournament tees and string backpacks made for all the girls to wear and we are packing those back packs full of goodies to get them through the day and spur them on to victory. Can't think of a better way to spend a Saturday before hosting Blake's party.

In between all of this I'm still decorating for the holidays. The dining room and kitchen are overflowing with totes and boxes. I have both of the girls trees done. Ashley's is truly amazing this year. She LOVES it. I find her laying next to it several times a day watching the lights and gazing at ornaments. To add to the festive atmosphere in the play room I'm painting large snowflakes this afternoon to hang from the ceiling. She's been watching Rudolph and Frosty for the last few days which totally cracks me up. She chooses her own movies and just to see her flip to her Christmas selection makes me smile. She is SOOO my daughter. She is so happy these days. Not a day goes by that I don't whisper to the Father how thankful I am for her being here. Not a single day. Life is truly sweet during this time. I think the fact that we are living days with her that weren't expected to be given to us just makes everything pale in comparison to the joy we experience while listening to her laughter.

Homecoming is next weekend. Big deal at our house this year. For the first time Allie isn't going single and Blake is. Funny how life can change when you least expect it too. What I love most about my kiddos is how they have learned to find joy in most circumstance. They are happy and light hearted. Ashley Kate is a constant reminder that life is good and they are blessed. Our teenagers have an amazing, God given ability to concentrate on what's important in their lives and I know it only comes from their experiences with Ashley Kate's struggles. Even in the hardest of days for our family God has done amazing work in each of our hearts. The little things don't really get them down. Not when they have a bubbly, giggly, smiley, and oh so happy 6 year old to come home too. She's been a healing presence in our home through the years. I love that for them. Really, really love that.

So, I'm off and running. Hoping to get it all accomplished and in place today so tomorrow and the next runs as smooth as possible for my kiddos. Being a mom has got to be the very best job in the world. I'm a lucky girl! Take care.

9/28/2011

5 years

Has it really been that long? It seems like it was yesterday, and yet it seems as though that yesterday took place a lifetime ago.

When I answered the phone that morning my heart began to race. In the words of our GI physician we had "pulled the trigger". No going back. If I had known then what I know now I wonder if we would have ever "pulled"?

I remember running through the house packing things as fast as I could. You see at that time we were told not to expect a call. It was so unlikely that a set of organs would come available for our tiny Ashley Kate. She was so ill it was assumed she would pass long before that call could ever be made. So I wasn't prepared. There were no suitcases that had been packed. There were no real preparations made for the trip. I smile remembering that because only the Father in Heaven knew that after a short 20 days on that list the call would actually come in. Only He would know the people who would be set in our path to minister to a frightened, naive, hope filled, set of parents in the halls of that hospital so far away. Only He knew the plan He had for our girl. Our tiny 11lb, 13 month old baby girl.

I am haunted by memories of that time. Horrible images. Hard days. The hardest of days. Days so long and so painful that there are no descriptions to be given. Those days seemed to last and last and last. It was one struggle after another. Yet, in the midst of that time there were blessings that buffered our pain. There were people who prayed. Those who reached out. Several whom we had no idea would play such a profound role in our lives just by ministering to us in what they may have thought was a small way. In times like those the smallest acts of kindness seem to make the longest lasting impact. In my experience anyway. I'm grateful for that lesson. One of many that I have learned in the last 5 years.

This week I've a lot to reflect on. I've a lot to be thankful for.

Had we not "pulled that trigger", as devastating as some of the repercussions have been, she would not be resting a room away from me at this moment.

Again, I ask myself, if I had known then what I know now would we have proceeded?

I think yes. I think back over all this 5 years post transplant has given us. Pain? Sure. Hard times? More than most could ever imagine. Tears? Buckets full. Cried over her hospital bed and in my own bed most nights since. Still though how could we have missed out on all the good days in between and since that call? How empty our lives would be without her in it. The joy we would have never felt. I can't even imagine.

This week I am in a better place then I was a year ago. A year ago I was so injured and so frightened by the loss of that precious organ I was blind to the fact that there was still another organ keeping her alive. I think because that liver was struggling so and she was so ill recovering from explant that I couldn't see past her frail body, her glowing skin, and the loss of her spirit as she lay in her bed. This year its different. I still can't celebrate in the way we had in years past. There will be no release of balloons, no cake, no pictures taken. Its different once you've lost one organ. Its not the way it was. Instead there is an even deeper appreciation that has come to replace the celebrations we once held. There is a remembrance of a great loss, a tiny life, and a mother's empty arms. Those things remain the same, but added to those things is a gratitude for life that runs so deep I have a hard time sharing it. I've watched her smile and laugh and giggle so hard this week that it freezes me. I stare so deeply into those amazing eyes that sparkle and I see life. Her spirit is in there. Her joy is full. Her experiences have not defined her. Her love for life is spilling out onto each of us who are so blessed to live inside these walls with her.

5 years ago a ten year old little boy tried to be the bravest and strongest big brother this world had ever seen. An eight year old little girl held a tiny baby sister on her hip and walked the long hallway of that hospital. Two frightened parents did their very best to hold their world, their family, and their baby girl together. I remember who we all were then and I see who we all are now. My teenagers are amazing. A lifetime of lessons learned in just 5 years. Kind, compassionate, understanding, unselfish, appreciative hearts. Not allowing the current struggles in their day to day lives to overshadow the enormous gift of family they have been given. Knowing how precious each day of life is. Realizing how blessed they are to be strong, healthy, talented, and able. Nothing taken for granted. How could I not be grateful for this journey. For this gift. For this life. Her life.

Again I'll say, 5 years... its seems like it was only yesterday and yet its been a lifetime too.

To the mommy who so unselfishly gave to us during what I can only imagine was the hardest time in her life...I am forever grateful. You are loved by a family of strangers. Never forgotten. Always appreciated. May God comfort your heart this week.

9/27/2011

Simple, but OH SO SWEET

Ashley Kate is still sleeping. She sleeps late most mornings these days. I'm ok with that. I like sitting here a room away, listening to her Christmas carols play(they play all year long in her room) and the sweet sounds of her breathing. I walk by the door to her room and peek at her several times each morning. If she hears me she adjusts herself, pulls her quilts up tightly over her long legs and squeezes her eyes tight. I love that! I really do.

Life is simple in her world. I'm ok with that too. In fact, I prefer it that way for her. I've tried it both ways, heavily scheduled with therapies, school work, and doctors appointments, and then this way with only rest, laughter, play. Like I said, I prefer it simple. She's happy.

Every once in a while I long for it to be different for her, but I always end those longings with thanksgiving that life is so sweet for her instead. She knows not of what she is "missing" out on and to live a life in that way is almost a longing in my own heart.

I asked Dave the other night if he would be ok with her never learning to read or write. He said he was. "Life isn't really about all of that. I've learned that the world tries to fit everybody into the same box and the truth is its not the way it has to be. Not everyone fits in that box, and thats ok." I smiled on the inside lying next to him in the dark that night. I love him. He is so wise. He brings to me a balance that I lack.

I guess I found myself struggling a little with all the "what ifs" and such after her last dentist appointment. Words sting. Even when they are innocent and accurate and nothing more than a description. I just have never defined Ash as anything other than beautiful. I hate when she is defined by the rest of the world. It hurts to hear things like, "special needs", or "a child like her", or "with her behavioral issues". Seriously, is that what you see when in her presence? I feel so sorry for anyone who doesn't see more than that. I see so much more when I stare at her. I spend her life thinking outside of those stupid boxes and doing my best to not have her labeled.

With all the struggle over this the past week or so I have changed my focus. I am now squarely focusing on the simplicity of who she is and appreciating her take on this world. Simple. Sweet. So happy. What else even matters?

She won't be having any teeth made to replace the lost permanent teeth. Her smile will be a constant reminder of a the accident and yet also a reminder of how blessed we are that all she suffers from is missing teeth. That is a lot for me to swallow. They can't make a flipper for her and aren't even willing to try because of all those lovely labels thrown out at last weeks appointments. An implant is not possible until her facial bones are fully grown and no one expects her to live into young adulthood. That is a lot for this mom to think on. Still it makes me smile to see her snuggled in her bed because no one expected her to live to this day either. I can't tell you the number of times we have been told she wasn't expected to make it. A year ago they had me believing it too.

But today...she's still here. And today...life is simple. And tomorrow...I expect to be just as sweet in her world as it is in this moment.

9/23/2011

In our home...

A plaque hangs on a wall to remind us and all who come to fellowship who this family is. I love the gentle reminder but bold conviction it brings to me daily as I glance at the words written there. Last night as I watched the children play together a smile crept across my face and etched itself upon my heart. Truly, we are a family. One that is blessed.


We extend grace. We welcome strangers. We listen. We share. We laugh. We cry. We make mistakes. We show mercy. We forgive. We pray. We give thanks. We CELEBRATE life. We believe in love. We are a family.




We enjoy.



We hug.



We giggle.



We play


We rest.



I can't imagine living life any other way. I am grateful for this day.




Memories made the evening of September 22, 2011

9/20/2011

Other News

I'm super happy to report that Ashley looks really good this morning. Really good. Very hard to believe its been just a week or so since her accident. Her face looks almost normal today. Seriously, she looks good. The left side is still a little swollen so its bigger than the right, but compared to just days ago she looks amazing. I didn't find any new bleeding this morning. Much of the dried blood has finally come loose and so her mouth is looking much better as well. Dave peeked inside last night and said the color of her gums are almost normal again. I was even able to see a part of her front tooth this morning. It had been so swollen around that tooth we couldn't even find it! She has some light bruising on her nose still, and around her top lip. Her left eyelid is still very dark, but improving. I don't think the dentist or his staff will even recognize her Thursday. She looks that much better than last week. We aren't able to get inside of her mouth to clean it up or even brush her teeth yet, but I'm hoping we are only a couple of days away from that. I think she will feel much better once we can at least clean her teeth off. They wouldn't allow us to even rinse her mouth with anything other than water because of the risk of infection. They also said it would sting and cause more pain for her. Needless to say her breath is not pleasant:)

So in other news...

Allie will be cheering at the football games tonight for the first time ever! She's very excited and I hope she has an amazing time. She is unable to tumble or do any jumps because of her knee injury, but she will be down on the field participating. Thursday will be her first night back at soccer. I'm a little nervous for her since she has not run full speed or kicked a ball since her injury, but she has to get back out there at some point. She has a double header in Arlington Saturday and she is very hopeful that she will be playing. She is doing really well. Keeping up with her therapy every night before bed. Mirco current. Taping and bracing every day. She's back playing volleyball and feeling minimal discomfort afterward. Overall, she's getting her life back to normal. I'm so grateful for this sweet girl in our life. She is so fun. That pretty much sums up our Allie. FUN. Always making us laugh.

Blake is busy playing baseball. Nothing surprising there. Sunday he had a great showing. He was 8 for 10 at the plate with one walk and a sacrifice fly out to center that scored. He had a two run homer over the fence, 4 doubles and the rest were hard line drives that singled. He's working very hard every day after school doing lots of tee work, and playing with a group of his friends for the Dallas Patriots on Sunday afternoons. He will be turning 16 in just under two weeks and very much looking forward to that. He remains a joy to parent. Honestly, over the last 16 years I can't think of a time where he hasn't been a joy to us. Really we have been blessed with such an amazing young man.

Dave and I are just being us. We love parenting. Love our family. Love our practice. Love our patients. Life is filled with bumps and bruises along the journey, but at the end of the day I wouldn't trade our life for anyone elses'. Its the bumps and bruises that have made us appreciate all the time we are being given. Hope your all well. Enjoying all that you've been blessed with.

9/19/2011

Guilt

Wow...its such an ugly thing. Keeping me awake every single night since her accident. There is no escaping it. I wish, I wish, I wish I would have NEVER taken her up to her room that night. What was I thinking! As Ash's mom I've spent a full 6 years doing everything humanly possible to keep her safe and to spare her as much pain as possible. Obviously I failed at that last week.

Overall, Ash is doing amazing. She is so incredibly strong. So strong. Her face changes daily. Swelling, shifting, bruising, shape,etc. has been rapidly changing. This morning she looks pretty good.

We saw two dentists last week. The first met us at the car not asking us to take Ash out and looked to the best of his ability inside of her mouth. His words "This is bad. I can't do anything with this. Call this guy and see if he can help." An honest assessment, but not really what we were hoping to hear. The second looked at her and said, "I can't really do anything right now. The trauma is to new and she needs to be on antibiotics for 7-10 days before I can even look inside of there." We knew some kind of assessment had to be done. She had loose and dangling teeth inside of a torn, cut, and badly damaged mouth. We encouraged him to at least see if any of the teeth were ready to come out because although we knew the pain would be great we did not want her choking on them in her sleep. With some extra hep holding her down he was able to get inside and pull the loose teeth. Then we left and started her on IV antibiotics with a return appointment scheduled for this Thursday.

Neither dentist is exactly sure what the course will be from here. Possible surgical repair, although we all hope not. Possible loss of another permanent front tooth. They said it could be up to 6 months before we know what teeth are going to die and what are going to survive. They are consulting with some colleagues to develop a plan to implant teeth in the places where permanent ones have been lost. Maybe root canals, maybe a few other issues. They just can't say yet.

Her mouth does look better each day. It is still actively bleeding and we are pretty sure she needed to be stitched up that night in the ER, but they were pretty much afraid of her. No one wanted to do much of anything with her. I understand why they were all hesitant, but she's still bleeding 5 days after the accident. Really scary stuff.

She is happy. Like always. Ash has a spirit that can't be quenched. She loves life. Even on the harder days.

I hate her chair. HATE it. I thought I hated her in it before, I'm terrified of using it now. She is fiercely independent. Loves the freedom it has afforded her, but it scares me. I am haunted by the sounds of her fall, the screams that followed, the images of the blood and teeth left on the floor, the sight of her trapped, face down underneath the chair. I am beyond grateful and amazed that she was spared any fractures of her face. Totally the hand of God on her once again. I pray every night that God would help me forget the sounds. I can't sleep because I hear it in my head again and again and it breaks my heart that she endured such a fall. I won't put her back in the chair. Not when I'm here. Dave and my mom insist on allowing her to use it. It makes her so happy. I just can't have her in it when I'm in the house. She is much safer on the floor than in the chair.

Today we started looking for contractors to give us an idea of the costs of raising the floors in our family room. If I'm ever going to have her back in that chair it has to be one level in our home. I never want to put her at risk ever again.

Its been a nightmare of a week. Total nightmare, but Ashley Kate handled it with her fierce love for her life and just kept on going and going and going. Thursday won't be fun for any of us, but it is necessary and I'm hoping for it to give us some more direction.

9/15/2011

Trauma

Last night, right before bedtime, Ashley was involved in an accident in our home. This morning we are asking for your prayers. I imagine she has a long day, possibly days ahead of her as physicians, dentists, and probable surgeons work it all out.

Ashley went off a step in our home while secured in her wheelchair. She was strapped in and fell forward onto the hardwood floors. With no ability to catch herself her knees and her face caught the full brunt of her fall. We spent several hours in the ER and all that was accomplished was determining through x-ray and CT scan that she suffered no fractures to her head or face. We are very thankful for that. Other than that, there was nothing they could do for her or offer to us. This morning we will start the process of trying to figure out where to go from here.

Ashley has multiple lacerations inside of her mouth. She suffered a large contusion to her gums. She knocked out one of her permanent top teeth instantly and will more than likely lose the second as well. The portion of gum that holds those two teeth is badly damaged. It has been cut, is out of place, and still holds what we are suspecting but really unable to see well is the other permanent front tooth.

This morning we ask for prayer for:

Wisdom.

Strength. For Ashley first and foremost. For my big kids who both cried themselves to sleep as they listened to the sounds of her screams. For us.

Infection. She is at a very high risk of developing major infections resulting from the cuts and damage inside of her mouth. Bacteria lives and dwells in all of our mouths.

Pain control. I do not know how they will assess the inside of her mouth. It will be very painful for our sweet girl.


We were unable to adequately clean her up. She is a mess! We are facing a very long day followed by what was a very short night of rest. She is bruised, bloodied, and exhausted.

After the initial two hours our Ashley, in true style, managed to play and laugh. She remains the absolute toughest person I have ever known. Truly our hero.

My kids have had a very long night. Very frightening. Very disturbing. There was a tremendous amount of blood and screaming. My heart is broken for all three of them. Mostly for my Ashley though who does not deserve more pain in her life. None of them do. Especially pain that we should have avoided. I'm truly sick over this accident.

9/13/2011

If I've learned anything

Over the last 6 years if I've learned anything, anything at all its this...life can change in a moment. There are no warnings, there can be no time to prepare, there is not a rewind button. Its with this "new" knowledge that I push on with. Living each day, absorbing the most precious moments, taking nothing for granted, and constantly being aware that in the most mundane of minutes inside this home can be found the greatest of memories. I wouldn't trade this awareness in my life for much of anything.

I sit in our home each night once we've all gathered back here after a day of work, school, practice, and games and this overwhelming sense of peace covers me. My heart feels right with the world and I breathe a sigh of contentment in my surroundings. So thankful to have normal. So thankful to be surrounded by these people. So thankful to be in this place with them.



Baseball...

I allow the pressure of homework, deadlines, injuries, medical issues, transplant, financials, and all the rest to pale in comparison to the moments in which I look around and see a handsome, healthy soon to be 16 year old young man sitting at my table, an amazingly beautiful and happy 13 year old with a bum knee glowing with a smile, and a rambunctious, chair driving 6 year old on a mission speeding across our family room. Life in this moment is good. It is precious. Priceless. Nothing outside of this home and the protection that this family unit provides me can enter in those moments to steal the peace I feel. I become keenly aware that I have been handed an undeserved gift in this life. It does not go unnoticed that all that I see and love and cherish are but gifts from a loving Father who despite knowing me STILL loves me.



Best Friends...

I'm not saying life is perfect. Obviously it is not. There is much stress, and pain, and hauntings of an uncertain future that lie under the surface, but its the knowledge I possess of what it feels like to be without all I am surrounded by in this moment that keeps me squarely focused on the good, and the lovely, and the most precious.



and rest...
Just a few of the gifts we are enjoying.

Each day I wake here in our home I smile knowing Ash and I stayed for another day. I face the new day with an excitement in my heart and a longing for another to come to pass. I embrace the moments and I eagerly wait for this evening when once again we will all be gathered together to finish up the gift we were handed today.

If I've learned anything over the course of her life its this...nothing is guaranteed and the moments we have can never be recovered once they are spent. Live... as if there will never be another. Pause...allow the beauty of those who surround you to soak into your soul. Breathe...a prayer of gratitude for all you are given. Pray...for those who are lost and hurting and missing what gifts they have yet to open blinded by circumstance.

9/08/2011

Out of Focus

For some reason all my pics from this evening are a little out of focus.

It really doesn't matter though because by the look on her face you can tell that her joy came through loud and clear. Thats what I wanted to capture anyway.


Dave and I sat back on the steps and watched these two "race" down the street. Ash is truly one of us...if it involves competition on any level then she's in! She was thrilled to be racing Blake and just like a big brother should he allowed her to win. Each and every race. I love that! Love the time he spends with her. Love the way he loves her. Love the way her face lights up when he's around.

This time at home has healed a lot of hurts in the hearts of my big kids. Last summer was very, very hard on them as we faced such uncertain times in her life. They absolutely love spending time with Ash and we don't talk much about the future. Concentrating on our todays and allowing the tomorrows to come when they come.


I'm so grateful for today. For who she is now. For all we have been given. For every single breath, every single moment, and every single memory. Focusing on Ashley's happiness and her life today not on the hurts that tomorrow may hold.

9/07/2011

To the brim

I'm sitting here watching my 6 year old Ashley Kate and the smile on her face, twinkle in her eye, and joy in her laughter has totally filled me to the brim. I can't even describe how much I love this silly little girl and who she has become. She is joy. True and pure and unspeakable JOY. I love her, I love her, I LOVE her.

May God allow her to be in our home FOREVER and EVER. May He allow us to never miss a moment of her life and may He grant us a thousand more tomorrows. She has truly taught me how to LIVE fully and contently. Life doesn't get any sweeter than spending an afternoon with this smiley, happy, joy filled little girl.

I'm grateful for this moment, for this day, for this time.

"Kneed to know"

Allie had her MRI last night. We are very, very grateful for the result.

NO tears, NO surgery!

Now she just has to heal from a nasty dislocation that bruised the bone and created a lot of extra fluid and swelling inside the knee.

We are feeling very upbeat, although she wants to be walking, and playing volleyball today! That unfortunately, can not happen, but it will happen soon.

She is unable to stand weight baring on the knee just yet. It is still pretty swollen and much to her disdain she is still needing the assistance of crutches to get around. She thinks she should be ready to go for tomorrow's game, but when you can't walk on a knee you simply can't play in a volleyball game. I think more than anything she wants to get rid of the crutches so she can try and convince everyone that she is ready to play. Its not gonna work.

I want her to play more than anyone, but this injury was a bad one. It still looks bad and she still winces with any movements. That tells us she's not ready.

Volleyball teams will be announced today at practice and she heard yesterday that she was going to be replaced. That was heartbreaking and when I went to check on her before lunch she stood in the hallways and cried. I cried on my way out the door for her. She worked so hard for that position and now she's lost it because of a stupid injury. UGH! As a former coach I know that's just the way it has to be, but it doesn't make it any easier to explain or accept.

My hope is that a week from now the world of junior high volleyball, cheerleading and club soccer will look completely different for us than it does this week.

Come on rehab, work quickly! She is determined to be playing in Saturday's tournament. I don't have the heart to squash that hope just yet. If believing she can play on Saturday keeps her from crying today I'm just going to keep my mouth shut and smile.

9/06/2011

Heart Ache

My heart is so heavy for Allie this morning. It just aches!

She is supposed to cheer tonight, and a day that should be filled with such excitement is filled with disappointment. It makes my heart hurt for her. If things don't turn around then we are going to have a week filled with disappointing days. I'm so sad.

She has an MRI scheduled this evening, but that doesn't make this afternoon any easier on her. She has a support brace on this morning giving support to the ligaments that hold her patella in place and is walking with the assistance of crutches. She went to school, determined to be there in case volleyball teams are announced and to be a part of the cheer activities.

I want to say its looking better, but its really not. The shape is all wrong and could just be distorted from the swelling. It looks like the patella is sagging, hanging lower than it should and it is sliding back and forth which is what sent her to the ground on Sunday. Overall though I think the pain has reduced? At least she's not crying from the pain anymore so I'm taking that as a good sign.

It's so hard to find the right balance when trying to talk to her. She could in fact heal quickly enough to play this weekend with a brace, but I don't know that its likely. She may in fact be out all season. She of course plans to possibly miss out on Thursday's game, but for sure be playing by Saturday's tournament. I hope she's right. I really do.

I hope to know more tonight.

9/05/2011

This past weekend...


This is the knee, the one I'll be sharing about. It was a good knee!


didn't turn out the way we had hoped. Let me start by saying this post is about our Allison and not Ashley. Don't worry...Ash is doing well.

This weekend was filled to the brim with disappointment and hurt and frustration. Watching your kids hurt has to be the most painful feeling in the world.

Allie blew out her knee yesterday. I'm not sure if that means anything to anyone else...but to a kid like Allie its a devastating blow. Simply devastating.



Notice the hot pink cleats? Its so Allie to wear something like that!


She only had the opportunity to play two games Saturday and then during warm ups of yesterdays first game we saw a huddle of players and two men running across the field. We had no idea it was Allie. Then the one of the players came running across the field yelling at one of their dads who is a physician to come over. As we tried to figure out what was going on we recognized the hot pink cleats. At that point we were really calm. Dave walked across the field knowing that Allie is a tough kid. She's usually able to take a hit and keep on going. She can play through some really hard injuries...but...this one is different. It really is. I think I realized it as I watched two men having to pick her up off the ground and carry her. She couldn't even get up on her own.

Allie spent the next two games on the bench sporting a brace. We did everything...she did everything possible in hopes of playing last night...but it wasn't possible. Her knee is in bad shape. We have no idea how severe it is or how long she will be out, but this morning the swelling and the color and the shape of it doesn't look promising.

Lots of tears. Lots. Disappointed doesn't even begin to describe how we feel for her. She is so worried about everything she is supposed to be doing. Volleyball teams are being announced this week right before the season opener on Thursday. I don't imagine she will be in that game. She's afraid she won't be given her position on the team if she can't play. I think she's right. Their first tournament is this weekend. I honestly can't see her being ready to play by then either. She is locked into a year long contract with her soccer team. There is no getting out, rehabbing, and then picking up with another team. She's in a bad place. Not playing is absolutely the worst thing that could be happening in her world. She will more than likely lose her starting spot on that team as well. She's supposed to cheer this week too. Her first game of the year. So heart breaking. She is so, so sad. There is nothing I can do to make her feel better about any of this. This is her world. Its what she does. It has broken her heart.

I guess I'm sharing in hopes that you guys would pray for her this week. We are scheduling an MRI to get a look at the damage. It appears that a ligament has been torn. We are hoping that it has not. If it is torn shes out for a long time. If its just damaged or strained then there is hope of seeing her play again. She and I are really hoping for this to go away in just a few days, but its looking like it will not.

In all honesty my heart hurts so bad for her. She is the most active, most athletic, most amazing 13 year old I know. Sitting out yesterday was so hurtful. She desperately feels as though she let her team down knowing they needed her out on that field and yet she absolutely could not get out there.

Sometimes parenting is painful. This weekend proved it to me once again. When your kids hurt, you hurt.

9/02/2011

Absorbing

Wow...its so weird not coming to this place, spilling my heart, writing, sharing.

I'm sitting still. Being quiet. Going inside my own heart. Listening to my own thoughts. Absorbing.

I've spent a lot of time this last week watching. Taking mental notes. Documenting in my heart sweet moments in our home.

Little things.

Watching Ash follow Blake around from the moment he comes in the door. Seeing her little hands pat the seat next to her urging him to sit down. Smiling inside as she wraps her arms around Allies neck as tightly as she can each night. Listening to Blake say, "If I don't see you in the morning then I promise I'll see you when I get home from school." Staring at Dave lying next to her in her little bed. She on her Ipad and he working on his Iphone. Content to be close to each other.

I love how they love her. I love that she's six years old and they have six years of memories spent together. I love how she loves them. How she loves us.

Yesterday in the doctors office I listened to these words, " Her outsides don't match her insides. She's sick." "I'm all about quality and this is quality."

I hear those things and I smile and cry all at the same time. So proud to see her enjoy quality. So grateful she doesn't look as sick as her body is broken.

I'm beginning to think I won't ever take her back to transplant. I'm beginning to think that allowing her to live and live and live is the plan. Still I KNOW when faced with her demise I will take her. I will give her that chance. I will cling to the hope that she can in fact endure and recover and keep going. It is sooooo tempting to try and imagine her childhood continuing on and on although we all know it will not. She can't live with one central line for a lifetime. Its impossible to keep her going for years with this line. It really won't happen, but its so hard to imagine anything else. So hard to see her back in Omaha. So hard to separate her from Blake and Allie and Dave.

For now we are doing our very best to take it all one day at a time. Trying desperately not to get ahead of the situation. She bounced back again. Its been slow in coming, but she smiles again and plays and laughs and moves. She requires a lot more rest. More sleep. Her liver is stable again. Her bone marrow kicking in and doing its job. Finally! But...along with those things it seems that she has more joy. The joy in her heart and the twinkle in her eyes seems to grow and grow and grow as time goes by.

I think Dave and I are doing a good job of not panicking. We look at what it is and we seek treatment for it. We are usually the calmest people involved in the situation. Any unfamiliar persons involved in her care seem to get a little frenzied, but we remain confident and calm. It is scary I suppose. Especially if your not used to seeing a 6 year old with only 11, ooo platelets on board, a WBC count below 1, and a drop in Hemoglobin to 7. Yeah, I get that its scary...but she's living and playing and growing and happy. So when you look at her presentation...and see the joy on her face...and hear the giggles escape her soul...its easy to just agree that "her outsides don't match her insides" and keep going.

I think a lot. Especially at night when the house goes quiet. I wonder what is to come and how it will all unfold. I wish I didn't. I wish I could lay my head down on the pillow and sleep would come quickly, easily. It doesn't though. So instead I plan and dream and maybe even imagine what we could pull off in her lifetime. I insist on giving her life experiences. I sacrifice a lot of other things to make it happen. I refuse to just sit paralyzed by the fears that I have while our days at home waste away. I can't do that. Although it is a battle not to if I get completely honest.

For now its ok. Her line is clear once again. Well, its colonized with bacteria, but this week we have no fevers and no signs of infection. So...we are going to ride this patch for as long as we can and when the symptoms come again as we are promised they surely will then we will treat and hope and pray. We are free of IV meds for the first time in a while and enjoying the freedom that brings to us both.

Tonight we will load her up and allow her to travel. Her FAVORITE thing to do. I wish you could see the smile that comes across her face when she figures out we are going somewhere. That she's going somewhere. She will spend the weekend in the RV while Dave and I have the privilege of spending ours watching Allie do what she does on the soccer fields. Its a big weekend for her. Her first season performance with her new club team. I'm excited for her. She's going to be awesome! Blake will stay behind. Its a big weekend in his world too. His Allison performs tonight for her very first time on their high school drill team and that is HUGE. Something she's spent her life working towards. Its important to her for him to be there in the stands and so that makes it important to him as well. I LOVE that kid! He's so awesome. Life continues. Its busy in our world. Complex perhaps, but we are juggling it all to the best of our ability. Looking forward to each week as the calendar fills up and we spend time raising our teenagers and following their dreams.

I love this life. Really, really do. Its blessed. Priceless.