Recent Favorites

Just wanted to share a few of my most recent favorites. I snap pictures almost every single day of her life. Never knowing what will become my favorite moment, my favorite memory. All I do know is that I sat in a hospital room a year ago this past July and mourned the moments I had failed to capture. I feared I'd not have the opportunity to see some of those things ever happen in her life again. I learned a lesson during that time. I never wanted to have another regret. Never.

Here are a few photos I've snapped over the last week or two. Its just my sweet Ashley being Ashley, but there is something in the eyes, the smile, the face of this child that makes my heart smile. I can't put my finger on it, but I know that I LOVE her so deeply I fail to find the words to even describe it.




Blake and Ash watching Allie play in her first basketball game this season. I love how much she loves her big brother and even more than that I love how much he loves her.

Allie and Ashley at before Allies game this week. I love these girls. Love that I have girls. Love saying...my girls.



Such a beautiful picture. She is so much more than I ever dreamed she could be. I never imagined she would be so lovely. So much about her is broken...so much about her is absolutely perfect.



Big girl. She's working hard again with Sue. Against her will, but still working. Some day...maybe some day... she will walk.

Your eyes do not deceive. She is standing there, taking steps, without our assistance. She doesn't walk miles, but those few inches might as well be miles in her world.

Ash has no desire to walk. She doesn't think she's missing out on anything by not walking. I wish we could figure out how to get her to want to. I truly believe that is the missing element in this whole equation. The want to. I've never seen her not figure out how to do something that she wanted to do...she's always come up with a way...she just doesn't want to walk.

Honestly, I think I've come to the place in this journey that I'm ok if she never does. It doesn't define her. If she walks I'll celebrate with her...if she doesn't I'll celebrate who she is anyway. I won't pretend it doesn't make my heart smile when I see her standing there though.

Update

Blake has a bacterial infection that invaded through a break in his skin in an area of his elbow that is affected by Eczema. It looks very, very similar to EB, but it is not. The outside layer of his skin is being eaten away. Its blistering, opening, and oozing. Very painful.

For the first time in his entire life he is taking an antibiotic, a steroid, a pain medication, and using a steroid cream. Very new territory for him and for us. Blake has never even taken so much as infant Tylenol! We are working very hard to figure out a nutritional plan to help settle the Eczema. We are very hopeful we can keep the infection from spreading to his left arm. There are 3 small breaks in the skin on his left, but currently it is not blistering or painful and the doctor does not think it is yet infected. They did warn that it could be spread to it by simply scratching it.

He is currently resting. He is not going to school today, but hopes he can handle it tomorrow. I'm not sure if he will be able to or not.

Dave spoke to Blake's coach early this morning and he was very understanding. We are grateful for his reaction. I think it is making missing the game and possibly the tournament this weekend more bearable for him.

Our hope is that in 48 hours we will begin to see some healing and progress. If not, the doc would like to see him in the office Friday morning. Your prayers are very appreciated. Thank you so much for loving our family.

Prayer for Blake

Its not often that I bring a need here to this place other than my sweet Ashley, but this morning I am.

Blake is in an unbelievable amount of pain this morning. His body is having some type of auto immune response. We are desperately searching for answers this morning. It has never done this before.

I thought about sharing pictures to give you a visual understanding of the degree of his pain, but honestly I think they would be even more gruesome than sharing Ash's transplant pictures.

He is home from school today. Determined to go yesterday it was the hardest thing he has ever done. This morning the surface area of his skin affected by the attack has more than doubled. His skin is broken, raw, blistered, and oozing. It is beyond description painful. My heart is so broken for him. He stands in the back of the house screaming behind closed doors and crying uncontrollably. He is exhausted. Simply exhausted. No ability to rest or find sleep for two nights now.

I've got calls into physicians offices hoping to get him in today.

I hate to say this but its a normal part of our world to see Ashley Kate hurting...never easy...but unfortunately part of our life. It is very not normal to watch the older kids suffer.

Blake was so determined to play in tonight's game he wrapped the raw skin yesterday, practiced, and then fell completely apart last night. This morning he realizes there is NO way he can endure the pain. He is out for tonight and more than likely for the tournament this weekend. More brokenness on top of the physical pain.

Please whisper a prayer for him today. A prayer for answers and at the very least some type of pain control so that he might find rest. I've never had to watch my son endure anything of this nature and its breaking me.

Home Again

Tonight we made the trip home from my sister's. Dave and I visited about how amazing this trip was for us. Really we couldn't have asked for anything more. Both the drives and the visit brought us such happiness. We were so content to spend time with our kids, my siblings, my parents, and my nieces and nephews. It seems our lives are pretty out of control most days with all the hustle and bustle of raising our kids, running a business, and managing Ashley's cares. We don't have much down time to just enjoy the relationships we've been blessed with. What matters most to us in this life are those relationships. Investing in them and allowing ourselves to slow down over the last 4 days was exactly what we both needed.

We sat still. We laughed. We ate. We played games. We laughed some more. We shopped(well my sisters and I did). We visited. We planned. We played some more games. Then we laughed even more. Seriously, playing a board game with my brother and his wife last night, one of my brother in laws, and Blake was probably the most fun Dave and I have had in months. I haven't laughed that hard in forever. It was the perfect memory to end the holiday on.

I especially enjoyed watching my 4 year old niece interact with Ashley Kate. The two of them were absolutely precious. My heart could have burst with the happiness I felt as I watched those two little girls together. Just another memory I'll forever be thankful for.

I never fail to wonder as I lay my head down back in our "home" town each holiday we spend there what life would have been like if Dave and I had not moved away. Both of my parents live there(they split up when I was only 7 year old) and all 3 of my siblings live there too. We are the only ones who don't live there. The only family unit out of all of us that moved away. I long to be there in the midst of it all sometimes. So when I'm "home" thoughts of what life might be tend to cross my mind. Last night as the thoughts came tumbling into my head I glanced across the bed at my beautiful 6 year old daughter and immediately knew we were never meant to stay "home". Never. There was a purpose in our move all those years ago and mere inches away from me there she was. Our purpose. My purpose. God had something so amazing in mind for us the day we packed up our moving van and ventured out into the great state of Texas that even my wildest of dreams could have never imagined. No more longing or wondering or imagining what life would have been...He settled it for me right then and there. We are home. Here in Texas with the kids. All three of them. Had we never have come she would have never become ours. Its that simple. Its that profound. It was His plan. His amazing, wonderful, undeniable plan for our lives. Ashley awaited us, years down the road from that moving day, and only He knew.

So tonight as the house has grown quiet, and the lights have been turned off, I sit here in our family room and I stare at the reflection of the Christmas tree in the glass on the doors across the room from me. Its my favorite place to sit, to be, at this time of day, during this time of the year. Its so warm. So welcoming. So home to me. I never feel more content in my life than I do during moments like this. The kids all sleeping in their beds. Dave retiring to our room. Me sitting still, absorbing my surroundings. I'm so grateful. My heart takes note of all I am being given. This time. The memories. The gift of her life. Its hard for me to want to be anywhere else but here and I realize that as good as it feels to go to our "home" town it feels even better to come back home.

It was a blessed Thanksgiving for my family. I can't think of one that has ever been more precious to me. It was one more I wasn't "supposed" to be given with her and yet He gave it anyway. I can't put into words the thoughts of my heart on this subject. They are just too...indescribable. As I look toward the Christmas holiday I imagine sitting here in this spot with our sweet Ashley Kate just feet away from me tucked warmly into her tiny bed as I log each days events into the memory of my heart. I hope to never find our family scattered across the miles from each other again. In the deepest parts of my heart He knows my longing, my hope, my desire for this little family of mine. Although I'm too afraid to voice them aloud, I've shared them with the only One Who can make them more than just a dream.

Truly, with God all things are possible.

Hoping your Thanksgiving was really amazing and wishing each and every one of you who still follow along this journey with us a very, very blessed holiday season. Make the most out of the moments you are given. They are an amazing gift. Love you all. Good night.

Thanksgiving Travels

I'm so very grateful to be on our way toward my next favorite place on earth! Nothing in the world feels better to me than to be in our own home or in my sister's homes. Its the best feeling to know as you lay your head down at night that you are surrounded by those you love and those who love you. Its the definition of peace. To be home.

Ash is SO excited to be going on a trip. This little one loves to travel. Be it on the loop driving past Red Lobster(one of her favorite land marks in Longview) or on the highway destination unknown to her. It really doesn't matter as long as she's in the car. She is so, so happy when she's in the car!

If I've learned anything in my life its this...Relationships are what matter most. People mean so much more than possessions. I'd give it all up in a heartbeat if asked to choose between those I love or those things I've been blessed with. I've never been sorry for investing in the lives of others. I've never regretted giving of myself to another person. I've never kicked myself for giving something that belonged to me to someone who could use or appreciate it. I'm at my best self when in service to others. I think if the truth be known we all are.

So as we head out on our Thanksgiving travels I'm focused squarely on the people we are going to see. Excited to spend time with my closest friends in this world. Blessed to be looking in my rear view mirror and seeing all 3 faces of the most amazing kids in this world. I'm sure we will laugh a lot, argue a little(two teenagers crammed in a car for 6 hours pretty much guarantees at least some of this), and sing a carol or two. I'm so looking forward to this!

Hope your evening is blessed.

In this Place

I sit here tonight so grateful to be in this place. This place that I sit this year. Approaching another holiday with Ashley Kate. Its such a different place than last year. Not a lot has changed. Not much more than my attitude. My acceptance. My approach.

I was so frozen, so afraid, and so panicked. I didn't know how to close my eyes at night. I couldn't stop the tears from falling. I wore the hurt daily. Not intentionally, but helpless to shed it. To read the written words of my heart bring me back to that place. I can feel the ache. The abandonment. The betrayal of all I thought her life was to be. It was raw. It was real. It was shattering.

This year the circumstance has not changed. Not one bit. We still face the unimaginable. We still have doubts about our choices. The timing. The outcome.

But...

I've learned to be thankful for a few things that I couldn't be thankful for a year ago. Some of it may sound a little strange, but this year, in this place, I am thankful for these things...

CVC's - Central Venous Catheters. I used to HATE them. All they represented. All the danger. All the risk they posed to her life. Now I can say I am truly grateful for them. Without them she would not be with us. Without them we would have no hope.

TPN - Total Parenteral Nutrition. It keeps her alive. Sustains her. Nourishes her. Allows her to grow. To mature. To develop. Every night as we hang that bag of yellow liquid I am thankful we have it. I can be thankful for it because she is no longer dying because of it. Once we added...

OMEGAVIN - her liver is functioning normal again. I can't express how deep our gratitude runs for those little glass bottles of white liquid that infuse into her veins each night. It balances it all out. I don't know how it works or why it works. I'm just GRATEFUL that it does work. I can't ask for anything more than that. She is not dying from liver failure. She is thriving.

This next one is a big one. Its HUGE. Its taken me a long time to get to this place, to admit, to view it through these eyes, but I think I can say that at this time, in this place that I am in tonight I can say...

EX PLANT - Wow. In those days, when this all began, it was the WORST thing that could have happened. It DEVASTATED us. All of us. I hurt so deeply. I cried so hard. So hard I was ill. Physically I became sick every night when I allowed it all to rush over me in the darkness. Nothing in my world was alright. NOTHING.

But...

As I listen to her giggle in these moments as I write I CAN be thankful for it. It saved her life. The transplanted bowel was killing her. The bowel in combination with rejection and the thymo treatments we gave trying to save it were killing her. I sat by her daily and watched as she struggled to stay alive. It was the worst time of my life. The absolute worst. I can't imagine it being any harder than it was during those days. Once we took the bowel out of her she began to slowly, and painstakingly come back. It was not a quick or easy process. It was long. It was hard. It was scary.

In this place though I can see how God used that ex plant to keep her with us. He allowed that bowel to be removed successfully. He kept her safe during those horrible, horrible days. He brought her back with a renewed zest for living. Her joy is FULL. It is CONTAGIOUS. It is everything I mourned it would never be again and MORE.

There is a freedom in living that comes from not having to be afraid of rejection on a daily basis. I don't have to count and keep up with every cc of fluid that escapes her tiny body. I don't obsess over every runny nose, temp, or emesis. Instead, I live. I allow her to live. I watch her play and laugh and experience life with all the joy she can muster.

I know it may be hard to understand how I can be thankful in this situation, but on the other hand how can I NOT be thankful. Look at her. Look at all we are being given. Being blessed with. Each day is filled with happiness. She giggles so loud and so hard that we can't help but giggle too.

There are hard days ahead. None of that has escaped me. I can't even imagine being back in the throws of life and death with my little girl, but I know that I will indeed be there again. I know this. Its just that when I think of all that I am thankful for this holiday season these are the words that keep coming back to me. If I had to sum them all up...CVC's, TPN, OMEGAVEN, EX PLANT...what I'm really trying to say is...provision.

God in all His wisdom, in all His mercy has PROVIDED. I am truly thankful for that. Truly. Beyond explanation.

For some reason...

I'm finding this little girl to be especially beautiful this week. I catch myself watching her sleep, watching her play, watching her sit, watching her smile, and she captures my full attention with her beauty. Sweet...simple...beautiful. Nothing earth shattering to write about other than realizing how incredibly blessed we are for these moments. Every day I whisper to Him that I love her and that I'm so thankful to have her here.

Peeks

Just two small peeks into the way my sweet Ashley views this world. Two peeks that brought laughter, smiles, and joy into our hearts. Reminders of what an amazing little girl we have been given and what an even more amazing God we serve.


On the way to Blake's baseball games yesterday we were running tight on time. As we took a left turn we could see a set of rail road crossings coming down. "Ugh" is what Dave said aloud as Blake and I thought the same thing.

But then...

How quickly our perspective changed.

As Ash heard the sounds of the engine and the toot, toot of the whistle warning everyone that it was indeed on its way down the tracks her excitement was building. We watched as Ashley Kate let out a HUGE sign for "Woohoo " then followed it with an " Ole' !" She waved furiously as the cars passed and the smile on her face and the giggles that escaped her mouth became contagious. We all sat in that car with her enjoying every single car that rumbled along those tracks in front of us realizing that being a few moments late to the batting cages was SO worth this moment. That train made her day! She was so happy.

As we drove across those railroad tracks moments later Blake shared with us, "I love this little girl!"


Just a couple of weeks ago we sat outside the fence of the ball field waiting for a game to end and for Blake's to start. The second baseman attempted to zip the baseball over to the first baseman to make a double play. The ball was overthrown and went right past the glove but crashed up against the chain link fence right in front of Ashley's chair. She giggled as she signed, "Woohoo!" and applauded. To her what made the play great was the up close and personal look of the baseball as if it had been thrown into that fence just for her. The sound of the ball crashing in front of her made it all the more thrilling. I smiled as I realized how frustrated both players on the field were for the over throw and missed opportunity compared to the joy on the face of my 6 year old.

Its all about perspective. The players were unhappy, Ash was SO happy. She assumed they were playing with her. The ball was thrown against the fence just for her. She thought those boys had done something amazing and even though they may not feel that way, she sure did.

We can't help but be blessed when we allow ourselves to view each day, each little happening, through Ash's eyes. The world is a happy, happy place, filled with excitement that thrills her little soul. Oh, HOW I LOVE THIS CHILD. We all do.


Have a blessed day.


P.S.

We now have tubing. Thank you to all those who helped and all those who prayed we would get some.

Late Night Conversations

There are days when the silence in Ashley Kate's life is so loud that it deafens me. I watch her play from across the room and will her to make a sound. Just once... say something...anything! I ache inside as I wonder what life would be like inside these walls if we did have a 6 year old who rattled on and on and on. Would we ever tire of hearing what she had to tell us? I think not.

I stood in the shower the other day praying and thinking and wondering what I would give back to her if the Lord allowed me to choose just one thing in her life. It didn't take me long to feel the smile creep across my face as I said aloud "her voice"! And then I laughed out loud when I realized how loud I had been talking to myself. Its not a secret how much we miss hearing all the things she could be telling us. There are moments of frustration for her and for us as we work on communicating and figuring out what she is saying.

Then as I lay next to her each night in her tiny bed and we talk about her day I realize that she is indeed speaking to me loud and clear. As I recount aloud to her all that her day held she giggles at some things, and her eyes sparkle at others, then her lips smile as I see recognition and attention in her face as she remembers all that I am talking to her about. Some days she recounts to me a story or two about the day in her own language. Its not so much the language of ASL, although the basis for it begins there. Its more Ash's language. Her own signs. Her own gestures that honestly only the 5 of us can understand. She's a funny girl. She has a great sense of humor and the things she chooses to "tell" me about make me laugh out loud. She commands the room each night with her requests and her story telling. She understands her world and she allows us to be a part of it. I'm so thankful for that. Truly I am. How painful it would be if she chose to reside there without us being there with her.

I treasure our late night conversations. The time of day where its just the two of us who remain awake. I look forward to listening to her. We sing songs some times. She makes her requests by signing star, or chickens, or farm, or whatever it is she wants me to sing about. I do my best to sneak in a line or two of Jesus Loves Me, but much to our dismay she has an issue with Jesus these days. I'm not sure what is going on with her and Him, but each night she pushes me off of her bed and waves bye when I begin to sing about Him. Its a little funny. At least when I shared with Dave what was going on we both laughed out loud. I'm sure its temporary. At least I'm hoping it is!

I guess I'm just missing her sweet voice these days as I visit with her. I know she has so much more to share with me if only her little hands could figure out how to say it. I've given up on so many of our dreams for Ash over this last year. Choosing instead to just enjoy her and to allow her to be happy rather than pushing her to do more and more and more. Its been a sweet year. Filled with lazy days of playing, cuddling, and giggling. I don't regret our choice to slow her life down a little bit. I really don't. Sure it would be nice to see her walk and run and jump, but its not my focus anymore. It would be great to have a back pack filled with books and pencils rather than IV pumps and tubing, but its not going to be that way for Ash. And...Its... ok... Really it is. Painful but ok. One thing we have decided to do though is work with her speech. Were going to try at least. As a family we all agree that if we could give her anything it would be a voice. So...as we venture out on this old but new again venture wish us luck. With a little of it we might just hear her say a little more some day. Maybe we won't, but maybe we will.

Until then I'll just keep listening to the silence and filling in the blanks for her until I get it right. Trust me when I tell you she lets me know if I'm choosing the right words or not for the blanks. And that makes me giggle. Out loud.

Looking For

Tonight I'm looking for some supplies. I know there are several parents of medically fragile children who follow along Ashley's journal and perhaps you have some lying around that you no longer use.

For some unknown reason we have not been able to get the correct tubing from our supplier lately. A shortage from the manufacturer or something like that. Anyway, what is being sent is not working with Ashley's line. We are unable to infuse her Omegaven through it. Her liver isn't as happy as it has been without it and so I'm looking for some on my own. Anyway, this is what I'm needing to locate. Its a Curlin Infusion Administration Set REF 340-4128(the one with the blue filter for lipids). I know in times past Ash has been on TPN then come off and we have had extra supplies on hand(actually we have been using the tubing we had on hand for the last 2 months, but now we are out). If this is the case in your home and you happen to have this infusion set of tubing on hand would you mind contacting me and consider selling it to us?

Thanks so much. Trish

Pieces

Trying to put into words the thoughts and feelings that swirl around in my head and in my heart lately is proving very difficult. I think on the outside I'm doing a pretty good job of appearing as though its all ok, but on my insides there are two of us who know my fears. Hiding anything from Him is a futile attempt because He resides there and knows whats going on.


There is a picture I saw once of a water pitcher that had been dropped and shattered into hundreds of tiny pieces. The pieces had been collected and painstakingly glued back together to resemble the shape of the pitcher prior to it being dropped. I stared at the pitcher for a while and thought to myself, although it is once again a water pitcher it will never again be a water pitcher. Its ability to hold water is no longer. Lately it seems as though this picture is what comes to my mind when I sit and attempt to share. I've been trying to not see it each time I sit down at this keyboard, but the honest truth is that every time I come to this journal its what I see. So then I close it without writing a word because I don't really have the words to share.

That pitcher reminds me of my heart. It was shattered, broken, and scattered into a hundred pieces last summer as I watched my sweet Ashley suffer. I stood there helpless to change the situation we had been placed in and I stand here in our home this morning helpless to change the consequences of that situation. I am merely a broken pitcher whose pieces were scattered, collected and glued back together. I myself didn't put my heart back together. My hands have done nothing but shake for the last 16 months. I could not complete such a task. I do feel as though He has been putting my heart back together. Slowly. Its not without cracks. Not without leaks. Not without flaw. It does however resemble the shape of what it once was though.

Life today is good. Sweet. Precious. Our Ashley rests in her own bed, plays in the playroom, and giggles in our home. It looks as though things have settled enough for us to put the brokenness behind us, but yet nothing has changed in her circumstance. Nothing is different. She still lives with a broken body. She still is kept alive by a liquid collection of minerals that are mixed inside a pharmacy each week. She still hosts a long piece of plastic inside of her chest that was threaded up her hepatic vein toward her heart, tunneled through her tissues, and hooked into the top of her superior vena cava. It is the longevity of that piece of plastic that determines her future. So nothing has changed. A bowel did not spontaneously or divinely grow and appear inside of her abdomen. Its not there. What one was there is no longer.

So as I look into the smiley face of our 6 year old I experience many emotions that seep through the cracks of my heart. It has been repaired never to be the same again. In some ways thats a good thing. I've learned a little more through the brokenness about the awesomeness of our Father. My faith has been strengthened. Yet at the same time my faith has been weakened. I don't know if any of you can relate or make sense of those last two sentences. I see Him for Who He is and yet do not understand His ways. I realize that without Him life is not sustained and though I've always known this I REALLY know this now. She does not live another minute or breathe another breath without Him, and neither do I. I am encouraged and I am afraid.

There are cracks left between the pieces of my heart that can not be ignored. They are there. Just as I saw them there in the image of that water pitcher. Yet what leaks into those spaces is a mixture of joy and sadness. Tears and laughter. Precious and painful. I can't remain the same person, wife, or mother that I was before July of last year. I'm different. I appreciate a little more and I cry a lot more too. I am happy and still I hurt. I am more grateful for the little things that make up our days and I miss some of the bigger things that I realize will never be. They have been stolen from her. From us.

The days ahead of us are just as uncertain as they were a year ago. I'm hoping for another today, another tomorrow, another Christmas, another everything. For I know one day there will stop being another for us. Still in the exact same place I feel as though I've been before. Still broken, but picked up and repaired. Pieces. No longer scattered, but collected and placed back together allowing the hurt and fear to seep through the cracks a little less frequently than they did this time last year. I'm grateful for that. For His goodness and His presence around us.