Vision

Tonight Dave came home from the office and jumped into the flower beds to help me for my birthday. As he worked on removing an old tree stump that had roots in all the wrong places for my planned extension he was struggling to see my vision. Dirt. I am afraid that is all he could see. Hard work. Still not capturing my vision. I tried to explain my plan. Moving this row of bushes from in front of the house to the front of the classroom. Taking these 3 bushes from along the walk and lining them in the row that I just removed the others from. Removing that old tree stump to make more space in the shade bed. Shaking his head at me while he continued to fight the old stump he said, "I just don't get it." He likes the dirt we have planted and really doesn't care to see the beds in bloom again, but here is the catch, tomorrow is my birthday and in our house the rule is that you HAVE to be nice to the one celebrating. So moving bushes, tree stumps, and whatever else gets in the way of the "vision" has to be done. Allie walked up behind him and said, "Is that a little murmuring and complaining I hear? Do all things without murmuring and complaining and do them for the glory of the Lord. Did you know that daddy?" We laughed and laughed. Sometimes it takes a word of wisdom from one of the children to set us straight. I am so glad she can see my "vision" and that she even had a little scripture to back it up!

As we worked I could see it. I could see us both sitting on the front porch with Ash on our laps drinking ice water and looking out across the lovely, blooming, flower beds watching Blake and Al play. Just the five of us relaxing together with no more work to be done. This is my vision for the family. I am looking forward to it becoming a reality just as soon as we move home.

Ash had a pretty good day. A little nausea and vomiting, but not enough to keep her from smiling and playing. She spent the afternoon and evening playing inside Nan's as we worked. She seems to be making a little more progress each day. I know the things we report her doing don't seem that amazing to some, but we are amazed with each and every accomplishment. Giving thanks for the smallest of things, because they will one day lead to bigger ones. Tonight her brother and sister were placing plastic Easter eggs on her head. When they would fall off she would pick them up and try to place them back on top of her head. This is HUGE. She was understanding the game, picking up the pieces using her hands, and attempting to balance them back on top of her head. Tonight Allie told me that she can "just see Ash in 3 or 4 years with NO tubes, or wires to watch out for and being ready to be picked up and snuggled without having to be careful." I hope that happens for all of their sakes. If they could just snuggle her and wrestle her and play with her without all the rest it would be so good for them all. If it doesn't happen then that will be ok too. They are learning ways to get around all of her extra stuff to play with her and love on her.

Tonight I am thankful for "vision". The ability to see past the present circumstance and see what will be. Without vision I am afraid that there are some days that things around me might swallow me up. I know that even when I struggle to see the "vision" that He already sees it and knows it. There is a plan and He is working it for our good. I know it.

Turning The Page

Tomorrow will be exactly one year to the day that I sat inside a doctor's office and listened to these words,"In my opinion she has about 3-6 months to live. You take her home. Feed her real food. Food you feed the older children. If she can handle it and begins to grow, then she has a chance to survive. If she can't, then you have the answer you need. Without a transplant she will not make it." Short and to the point. No emotion. Very little compassion, but honest. The doctor knew Ashley's condition well. It had become her life's work. She had a daughter who did survive. A beautiful 16 year old daughter who had attended the school dance wearing a spaghetti strapped dress that showed her central line scar. Sure she was tiny and petite, but she was alive and happy. She told me again, "You will know by the end of the week. Good luck."

I left that visit feeling numb. Defeated but still a little hopeful. Does that make any sense? I didn't think my tiny Ashley's bowel could digest chicken, potatoes, vegetables, etc., but I had never tried. Maybe, just maybe it would work? I called Dave and feel apart. I sobbed as I tried to explain to him what the goal was. My mother in law was driving, Ashley was sleeping, and I was crying. I could hear him struggling on the other end of the phone. He was trying not to cry, but I know him and I could hear the strain in his voice and I knew the pain in his heart. At the end of our conversation he said, "By the way, Happy Birthday." Oh, yeah it was my birthday. On my 32nd birthday they told me my tiniest child, my gift from God, the one I had prayed for, would die in a few months. The pain that you feel, the lump in your throat, the sickness in the pit of you stomach, there are NO words to explain how much it hurts.

During that week we tried. We tried. We tried. It didn't work. My Ashley became so ill and so weak from the food she was trying to digest. By the 3rd day we had stopped. It was stealing her from us. She could not smile. She could not play. She could not live. Her body was not capable of handling these foods. Those are the nights that my nightmares began and they did not stop until God intervened. They lasted for almost 5 months. I hated to close my eyes because where I went was horrifying. I would wake in a panic, in a sweat, and grab my baby out of her crib to hear her breathe, to listen to her heart beat, to touch her face and know she was still there. Thank you God for working and working quickly! Thank you for her gift. Thank you for your plan.

Tomorrow I will turn the page. I will not erase the page, just turn it and start a new chapter. I have been on this page for a whole year. The page has a lot to say. A lot of joys, a lot of hurts, a lot of battles, a lot of victories, a lot of frightening moments, a lot of peaceful moments, a lot of growth, a lot of lessons, a lot of purpose. I will wake tomorrow and gladly begin a new year in my life. A year that holds the possibilities not promises of many days to come with my Ashley.

Thank you for taking the time to read this page in her story. I KNOW it hasn't always been easy, but I pray that it was worth it to you. I pray that you have seen His hand at work. I pray that you have seen how much He loves you. I pray that you have seen firsthand the miracle He has performed in life of my sweet Ashley Kate.

In a Nut Shell

Finally home. 2 out of 3 children fast asleep. 1 sitting up and happily watching Praise Baby while her Daddy sleeps. Fabulous weekend. She is feeling good. Looks great. Calls the shots. When the princess speaks we ALL listen. Enjoyed our friends, our favorite baseball team, and a picnic under the shade of some of the biggest, most beautiful trees. Laughed a lot. Visited a little. Were encouraged by others and hope we encouraged a few. Looking forward to a new day and a new week ahead packed full of opportunity to make a difference in the lives of our children. Feeling blessed. A heart full of gratitude and eyes that will barely stay open. Promise to type more tomorrow( I mean in a few hours when I wake). Thankful for your prayers and His promises. Good night and God Bless. Love, Trish

P.S.
The Tarheels brought home another championship.

Dedication

This morning as we were driving Dave slipped something he had stumbled across into the CD player. I listened with a lump in my throat and tears in my eyes as our pastor began to speak. It was the audio from Ashley's dedication service. I was overwhelmed with emotion as I was taken back to the morning that we took our sweet Ashley Kate to our church for the first time in her life. We had just been told that without a multiple organ transplant she would not survive. I had been trying to come to grips with our news when Dave decided it was time to take her to our church and give her back to the Lord. It was this morning that the actual written words of Ashley's story began. I remember that morning so well. I had been trying for days to put something, anything in writing for Pastor Tom to read. I knew there would be no way we could stand and speak so I tried over and over again to think of something to share. I struggled not because there was nothing to share, but because the things I new in my heart to be true were so difficult to see in print. As I listened to him read our original "Ashely's Story" letter to our church family I became so thankful that I struggled through and told a piece of her story.

At the conclusion of the audio this morning I couldn't speak. I could barely hold my sobs inside. Dave asked me, "What do you think of when you hear that?" I could not answer. Then he shared with me what he was thinking. "When I hear that I think of answered prayers." How beautiful to hear him say that. He was right. That is exactly what her life is. Answered prayers. All I could do was nod in agreement.

If you had only known our Ashley a year ago you would see what we see. Her life is evidence a thousand times over that God is there and He is listening. He is busy working in her life and answering prayer. He doesn't always answer the way I would like for Him too. His answers are not always swift, but they are real and they are right. Without the ability to go to Him and know that He cared, that He loved her, that He was alive, and that He was doing what He knew was best for her I can assure you that we would have crumbled. Just knowing that she belongs to Him and that she was created to bring glory to Him helps me see that there is a purpose behind all that she endures.

As I type she sits next to me on the bed shaking her head "No" to all that I say. She says "no
even when she means yes. She knows she is ornery and she shakes that head with passion trying to convince me that she knows what she is talking about. She grins and growls and then slaps at the keyboard. To see her sitting up and causing trouble is such a blessing. She has such a long way to go, but I know in my heart that she belongs to Him and she is working on His timetable and not mine. I can't imagine the joy He must feel in His heart when He looks down on her. The joy she brings to me is indescribable.

I have no idea what tomorrow will hold for our Ashley, but the best feeling in the world is knowing that He does. I can lay my head down and rest knowing that she is in the palm of His hand and she is safe. I gave her back to Him because I trust Him and she was dedicated to bring glory to Him. My prayer tonight is that she does.

Time Together

This morning we are packed and loaded and ready to spend the day together. All five of us, together. Doesn't that sound wonderful? Our sweet Ashley Kate is finishing up her bath and then we will put her new sandals on(they are soooo cute!) and off we will go. I hesitate to say were we are going today for fear of being accused of my "lack of faith" and my poor parenting choices so I will just leave it at that. Just know that we will be enjoying the things we love most. Each other, good friends, our children, outside, and a game that starts with a "b". Ash can't wait!

She looks so good! We are so thankful she has pulled out of this yucky cold that she had and is now returning to her old self. She is silly. She is happy. She is the most wonderful thing. We couldn't imagine our lives any different than they are and we KNOW that all we enjoy comes straight from the Father to us.

We are scheduled for chemo therapy again on Thursday and that will begin our 4th cycle. This week marks the official half way mark. Only 9 more weeks to go, then we will scan her lungs and pray that they tell us the PTLD is in REMISSION. We are supposed to go out to Omaha at the end of this next nine weeks for a follow up and a game plan as to when we might schedule her take down surgery. In the mean time we will continue loving life, playing with our baby gherkin, and looking for ways to serve Him by serving others.

I trust that you all have a wonderful day and a blessed weekend. I have packed the computer and should be able to update this evening on how much fun Ash had. What a blessing it is to see our miracle living her life. Thank you so much for your love, your prayers, and your presence. Take care and enjoy your families. Trish

Lots of Laughter

If I had to make a list of the blessings in my life I assure you the word "laughter" would appear on it. It has to be one of my favorite gifts(right next to memories) the Father has given to us all. It doesn't cost a thing and it is available to all just because He loves us. In the fifteen years Dave and I have been together we have managed to find something to make us smile in almost every single day of them. He is usually the one that causes me to smile, and I am so thankful for his silly humor and antics. It keeps things fun even when life gets a little overwhelming. Our Ashley Kate has been laughing right along with her Dad all night long. She has the cutest smile! She crinkles up her nose, squints her eyes, shows us a row of teeth, and then FAKES the funniest sounding laugh you have ever heard. This in turn causes everyone in the room to begin laughing and then she begins to laugh and giggle with pure and genuine joy. It truly is one of the most beautiful sounds. I wish I could capture it, bottle it up, and carry it along with me everywhere I go. Nothing makes me smile more then to hear the joy He placed inside of her come out.

Today has been a good day. She has played. She has laughed. She has napped. She has lived. When she feels good she really feels good and it is such a gift to watch her living life. We took a long walk this morning and saw the biggest butterfly. It was black with blue spots on its wings and it flew right in front of her stroller. She waved her arms and giggled as it almost landed on the front of it. Oh how I wish it had! Ashley loves them and she loves to be outside. In the beginning of our wait for transplant I remember sharing with Dave how I thought of Ash as a butterfly. I even bought two butterfly broaches for our moms when we traveled to Omaha for our transplant evaluation. I shared with them how when I thought of a butterfly I thought of what the Father was planning for my Ashley. A new life. A new beginning. She would one day wake as something different than before. She would be given the opportunity to use her wings and soar into the plans He had in store. I chose the butterfly as a symbol to help tell our Ashley's story for these reasons. To see her outside enjoying the very thing that gave me hope in the days before her transplant touches me. I think the Father gave me these moments with my Ashley to remind me that He indeed does have a plan for her life. She may have been born as one thing, but He has used a series of events in her life to make her into something else. She is now a survivor. She is a tranplant recipient. She is nothing short of a miracle.

As I type I can hear her laughing in the next room. I am not sure what she finds so funny, but I have a good suspicion that it involves her daddy. I love to watch them together. If my girls can grow up to find a husband half as wonderful as their Dad then I know they will live a blessed life. Thank you for being here. Thank you for praying for our baby pickle. I know the Father has brought you into our lives for a reason and we are more than blessed by each and every one of you. I pray you find lots of reasons to smile and laugh this weekend. Good night and God bless. Trish

A New Day

How wonderful to wake up to a new day each and every morning. My sweet Ashley is feeling like a new person this morning. I am so excited. She seems to have beaten the worst of this cold, virus, or whatever it was, and is now ready to be her sweet self again. She has a small amount of cough and congestion that remains, but the important thing is that the smile has returned to her face. She is sleeping well at night, eating baby foods a few times a day, and playing, playing, playing. Thank you for praying for her.

This morning we are going to go outside and listen for the birds, watch the squirrels, and hunt for those butterflies that captivate her asttention. I am not sure why she is so drawn to them? Maybe its becase their little wings flutter so quickly. Whatever it is I think they happen to be her favorite part of being outside these days.

Today Ash is expecting a very special visitor, and she is so excited. Her nurse, Allison, is coming out to run her cytogam infusion for us. Ash hasn't seen Allison since the week we left for Omaha. We can't wait to show off. Allison watched our Ashley deteriorating along with us for the eight months we were home before transplant. She spent many mornings in our nursery listening to me fall apart. We cried a lot those days, we laughed a lot those days, and we waited. What a HUGE blessing Allison has been to our Ashley and to our family. Today she will see our Ashley's beautiful skin color, white eyes(no longer green:), and see how big she has grown. I remember how we used to hold our breath as she would place Ash on the scale each week just hoping for it to change from the previous number. It never did. In eight months she never even made it past 12lbs. We have SO much to be thankful for!

Well, my Ashley is shaking her head at me, grabbing my mouth, and knocking my hands of the keyboard. I think she is ready to go outside. She tends to be just a little opinionated these days. I guess I will close for now because it is getting more and more difficult to wrestle her. She is now waving "bye,bye" to the computer. I'll talk to you later. Take care. Trish

Working Mom

Today I am a working mom. I mean a working mom outside of the house. Dave needed help in the office this afternoon so here I am. I honestly don't know how much help I am. I basically answer the phone, mess up the appointment schedule, and visit with our patients(this part I am really good at). Between all of my mistakes he has to run up and fix and my questions about how this or that is done I think he might have been better trying to juggle all the balls himself. Oh, well it makes for a fun afternoon as he laughs and laughs at me. I have actually accomplished a few things. I have filed, cleaned the dark room, and inspired him to get a few things going he has let go for far to long. The kids showed up after school and Allie is now helping me file x-ray films and she is really good at it. She loves this kind of work and has the biggest smile on her face while she is doing it.

Nan has Ash for us this afternoon. I think Ash is starting to feel a little better each day. All of her cultures have come back negative. We have no answers as to what made her so sick, but it doesn't really matter as long as she gets better. She is staying awake for longer periods of time and is smiling more and playing with her toys. We are so thankful she is starting to recover. Her white count is still under the norm, but it too is slowly recovering. Just in time to go back for another round of chemo next week.

Today we received a surprise in the mail from one of our tranplant friends. I was so excited to hear from them. We knew each other for a short period of our stay while their infant son received a liver transplant. How blessed I was each day to enter the family room for lunch and find his mom there. We visited, we cried a little, and we talked about our families. I miss her and I had been wondering how they were. So today I want to say thank you to Amanda and Kinnick for the beautifl book. It made me cry as I thought of us living each of those moments with our children. What a gift we have been given. Along the way I have met many, many people and I just wanted you to know that I think of you often, and I am glad for our daily encounters. May God bless you and your family.

I am looking forward to getting home to hold that baby pickle. I have missed her greatly this afternoon, but I know she is in good hands. I am so very grateful I have been blessed to be a stay at home mom. I wouldn't trade places with any one! Thanks for praying for her today. Can you believe it has been 7 months since we got "the call"? Time slips by so fast. Take care and God Bless. Trish

Remembering The Gift

Seven months ago tonight I tucked our little gherkin into her crib and laid down next to Dave. I listened to her toss and turn for a while. She was so restless. I couldn't figure out why. I listened to her fuss and cry for a while. She eventually drifted into a very light sleep.

"Dave?"
"Are you still awake?"
"Huh-uh", he said.
"Dave, do you think she will ever get organs?"
"Uh-huh. I think she will."

I didn't believe him. Later he would share with me that he didn't believe himself either. I think the only one that knew God was at work at that very moment was our Ashley. She new something was up. Her behavior that night was so different from her norm. She never fell completely asleep. I listened to her the entire night and I prayed for more time not knowing if we would get it.

During those very moments another family somewhere was experiencing their worst nightmare. I was praying mine wouldn't come true and they were living theirs. How unfair it is. I have tried many, many times to come up with an explanation for Blake and Allison. "Why does another baby have to die so ours can live?" they ask. Even after all these months I still don't know what to say. I don't know if I ever will. All I can say is that this very special family gave us a gift that night. They thought of others when their heart were breaking. They were selfless and because of that our Ashley lives. She smiles. She laughs. She giggles. She plays. She does all the things that our precious donor no longer does except through her. As I held her in my arms tonight and told her, "Ashley, mommy loves you." she smiled and reached up to touch my lips. Their was a twinkle in her eyes and I stared into her face and thought of how she is now made up of two little lives. Hers and her donors. She carries inside of her a gift. A priceless gift
that I had no way of obtaining for her. Trust me, if I could have given it to her I would have. There was nothing in my power that could provide it to her. Only the Father could provide and He did.

Tonight I don't know if I will sleep. I always have a hard time sleeping on this night. I remember what it felt like to wait. I remember how it felt to know that she was slipping away from us. I remember the nightmares I used to have. I remember our donor family and I pray for them, and for their hearts to be comforted as they endure another month without their little one. How brave their child was. How brave they were. How loved they are by us.

Seven months ago tonight I had no idea our journey would take a turn towards giving her life. I had no idea the phone would ring and we would step out in faith and place her into His hands. I had no idea what we would face. I only knew that Ash was different that night and I wondered what was going on inside of her. Now I know.

Please remember to lift up our donor family in prayer. Without their gift Ashley's story would have ended by now. They are such a part of who she is and what He plans to do with her life. Thank you for caring and for loving our sweet Ashley Kate. You will never know the depth of my gratitude. Good night. Trish

Lesson's from Laundry

Today is THE day. The day I have decided to tackle(again) our piles and piles of laundry. It doesn't seem to matter if I have it all washed and clean or if it is all dirty and smelly the piles that surround grandma's house are NEVER ending. I would like to say that the problem stems from living out of our suitcases with no other place to store it(which is true), but I remember having these kind of issues at home in our house too. I never can seem to get it all washed, folded, ironed, hung, and put away on the same day. Life just gets in the way of completing the task. In any given area of the house you can find baskets of soiled laundry, piles of unfolded clean laundry, stacks of crisply folded laundry, and wrinkled laundry on hangers that never found its way into our closets. Today will be different(I hope). I have decided to master the piles and FIND somewhere to place them. I have a goal and that's a good place to start.

Ash woke up vomiting early this morning and it lasted close to 3 hours. She is finally resting again and seems to be more comfortable now that she is asleep. As I was treating the spots on her clothing this morning I began to think about my heart. As I sprayed(and sprayed and sprayed and sprayed) everything she had managed to soil this morning I started praying. Just like that dirty laundry I was working in my hands, I could see the Father holding my heart in His. I wonder if He is hoping to work out the soiled areas of my heart today? I continued working on the laundry and allowed Him to begin working on me. I prayed that He might cleanse the spots in my life that have been piled up for far too long. I asked Him to treat those areas and make them clean. I began to giggle at myself. Who in the world can take a pile of laundry and use it as a devotion in her life? Only a mom. At this point in my life,I'll take what I can get and allow Him to teach me through anything. Even if it is a pile of yucky p.j.'s and blankets. I left the washing machine and started searching for a reference to go along with my laundry room devotional and this is what I found.

Psalm 51
...blot out my transgressions
...wash me thoroughly from my iniquity, and cleanse me from my sin.
...purge me...and I shall be clean: wash me and I shall be whiter than snow.
...Make me to hear joy and gladness.
...Create in me a clean heart,O God:and renew a right spirit within me.
...Restore unto me the joy of my salvation.


One thing I love about my life is that I get to do these simple,mundane tasks. Washing laundry for a baby gherkin whom I love with all my heart blesses me. Knowing that He placed her in my care along with Blake and Allison encourages me to WANT my heart to be clean, and pure, and free from spots. If He can use a bottle of Shout, a tub of Cheer, and a jug of Bleach in my life today, what could He use in yours? Just a thought I wanted to share. Take care my friends. Thank you, thank you, thank you for your presence here and for the prayers that accompany it. Your are loved and appreciated. Trish

New Pics

Ash has had a better day today. She has been more active than she has over the last several days, cried less, vomited less and seemed to love life a bit more. I was happy to see her smile for the first time in a few days and for a brief moment I even got her to laugh as I tickled her. Tonight as she sat on the floor surrounded by her toys we saw something amazing happen. She reached out and picked up one toy and started banging it against her little piano. It was the best thing I have seen in a long time. She certainly is not progressing as fast as we had hoped post-transplant, but we are beginning to see signs of mental progress and for that I count my blessings. I am very proud of her accomplishment today.

Thank you for caring and for your prayers for our daughter.

Goodnight,

DAVE

Because of His Wisdom

From the wee morning hours Ashley and I have been listening and watching Praise Baby. I love these DVD's. Not only do the images captivate her, but the music soothes and ministers to both of our spirits. I can't listen and watch while I hold my miracle and not be moved into a spirit of worship. This morning was no different. As I watched the images of His smallest children and His creation I was overcome with gratitude for His wisdom.

From the ant to the elephant, the creek to the ocean, the tiny seed to the oak I see His wisdom. In my life I am learning to appreciate that it is because of His wisdom He already knows what I need and what I can handle at that moment. Whether it be a "nap" or a night's rest He grants it because He already knows. A long endurance race or only one more step today, He grants me the energy because He already knows. A healthy child or a medically fragile miracle, He gave her to me because He already knew what He would equip me to do. His wisdom is astounding. Blessings, trials, struggles, victories, criticism, encouragements, milestones, setbacks, His wisdom determines them all according to what He already knows I need.

This morning my spirit(although it be sleepy) is encouraged. Ash and I will be dealt what His wisdom determines our day shall be. He will give to us what He already knows we will need. I don't have to worry because He is taking care of today and I am confident that in His wisdom it will be preparing us for one of our tomorrow's.

I am hoping she falls asleep and that her coughing will cease long enough to give us a nap, but if not I am sure He will provide the energy to keep going until her Daddy makes it home this afternoon at which point I will "tag" him and then go lay down. Its great to have a partner in this life. We are busy working together at raising our family. I know that this too was because of His wisdom and that He already knew we would need each other. I can't wait until 2:00!

Have a wonderful day and I pray it is blessed for you. Thank you for checking on our sweet Ashley Kate. As soon as we know something from her cultures I will let you know. Until then your prayers are appreciated as always. Take care, friends. Trish

With a lot of help I managed to get that little pickle everywhere she needed to be today and I didn't even break her.

DAVE

Growing Up

She really is, and I am so proud. The day I held my beautiful Allison for the first time I never dreamed she could grow into such a lovely young lady by the age of 9. On that day I had no idea she would love painting, planting, cheer leading, rock collecting, reading, new hair cuts, and french manicures. I had no idea she would end up with her daddy's fun loving spirit and silly sense of humor. I had no idea she would grow to be so independent and so strong at such a young age. On that day all I could see was her outward beauty, but today I got to witness some of her inner beauty. She is precious and I LOVED watching her today. She touched my heart as I watched her from afar. Visiting with friends, patiently waiting her turn to test, flipping her hair, straitening her clothes in the mirror, carefully washing her hands, being silly and sweet, a little shy at first and then gaining a new confidence as the day went on. What a joy it was to spend this day celebrating this accomplishment with her. She is not only my daughter, she is also a precious, little friend to me.

It wasn't easy leaving Ash behind this morning, but I know Allison needed me. Ash continues to struggle today and into this evening. We had every test we could think of run on her today. Her white count is trying to recover and our hope along with her doctors is that she will begin to recover as it comes back. At this time we have no definitive proof of anything other than her unusual fussiness, cough, and drainage. Last night she spiked a temp for a very short period of time but when we called our transplant team it had gone back to normal. She tested negative for RSV and the Flu today. Her chest x-ray was unremarkable. Her lab work still looks good. The only thing left to do is wait on her line culture to grow or hopefully not to grow. Our local doctor and our doctor in Omaha are suspecting it is viral and that she picked it up while her count was so low. I pray they are right. I pray it is not an infection in her line. I want so badly for her to begin to feel better. I haven't seen that contagious smile in days and I am missing it.

Dave and our moms did a great job juggling between our office's appointments and Ashley's appointments. I know it wasn't easy and it took all three of them to make it work, but they did it. I know I am blessed to have such a group of people who love our Ashley as much as I do to fill in for me. There is NO WAY I could do this on my own. Graypa even jumped in and ran to the school to pick up Blake for us. Ashley is so blessed. She is so loved by us all and there is nothing we wouldn't do for her. She is sleeping now and seems to be more comfortable while she sleeps.

Thank you all for praying for us today. The support and encouragement you offer to us carries me along on the good days and the bad days. Thank you for reaching out and allowing yourselves to love our Ashley. Someday I hope to be posting about my Ashley being all grown up and attending the Math Olympics just like her sister. Wouldn't that be amazing? By the way Al did not place in the top 5, but it didn't matter to us. We were so proud she was chosen to go and represent her class. Tomorrow she will receive her scores and her ratings and a "shiny" new ribbon. Her comment after the announcing of the top 5 scoring students was, "Oh, well at least I will have a shiny new ribbon to hang on grandma's fridge and I didn't have to be in school today." Silly girl, like I said "she's growing up".

Parenting is tough

Tonight I find myself struggling. Trust me this has nothing to do with the earlier posts about looking for something in"God's Ballpark" concerning my son or the decision to allow Ashley to live by giving her a transplant that caused her to have cancer and suffering. I can't even entertain that anymore.

My Allison has earned the right to represent her class at the Math Olympics in Plano tomorrow. This is something we are so proud of her for. She is a very good student and she works hard at it. What a privelage it is to go. I have been planning on attending with her since returning home from Omaha. She is thrilled that I am going with her. I have missed every class party, every field trip, and every important third grade happening this year. I don't want to miss this.

My dilemma is that our Ashley is still sick and we really think she will have to be admitted to the hospital tomorrow. She is not getting over this cough and cold and tonight she has started to spike a temperature. As soon as it hits 101 then she must go for an automatic 48 hour stay while we draw cultures from her line. I tried very hard last week to get someone, anyone to make a decision about what to do with her last week. Finally on Friday afternoon the transplant coordinator told me I could use some over the counter meds. These have helped her to cough up some mucus and to sleep, but other than that she is still the same. The problem is that Ash has a central line and the temp could be related to an infection in the line which could go into the blood stream very quickly and become dangerous for her. I think the cultures are necessary to rule out the possibility of an infection, but I am still praying that it is just related to her cough and cold.

Tomorrow we have decided (although I am sure there will be many who disagree) that it is too important to Allison for me to miss her event. She needs to know how very important she is and how very proud we are of her for this accomplishment. Ash can't go. She can not be around groups of people so she must stay here. I am having a hard time knowing that I will be driving off at 4:30 in the morning and not returning to her until 5:00p.m tomorrow evening. My heart is torn between my two girls who are both equally loved and equally important to us. This is when parenting gets hard. They both need and require attention at the same time and this makes for a tough decision.

I would really appreciate your prayers tonight and tomorrow. Please pray for me to be able to show my excitement and give our Allison the much needed and deserved time with mom, but also pray for my Ashley to be safe until I return. I trust her daddy and her grandma's to take good care of her, but it is a very difficult thing for me to leave town without her. I pray that her fever goes away. I pray that her blood is clear of infection. I pray for her cough to disappear. I pray that He holds her close while I am out of town for the day.

I almost hesitate to even post, but I depend so much on those of you who specifically pray for our baby gherkin. I know I will be judged, disagreed with, and probably reprimanded for this decision by some, but your prayers are worth all of that. One sincere prayer on her behalf is worth so much to me. Thank you for your continued presence and encouragement and support. I love you guys for loving her and for loving HIM. Good night and God Bless. Trish

Please Don't Put Him in a Box!

The more I think about the comments left to me by "anonymous" the more I feel like yelling from the rooftops,"Don't Put HIM in a Box!" The God that I serve is so much more than what some must think of Him. He doesn't belong in the bottom of a box and tied up neatly with a bow to fit a definition of who He is and what is His will for all of us is. I really think some have missed who He is.

To say that a professional athlete can not be a "committed Christian" and doesn't attend church and doesn't read the Bible is almost hysterical to me. When I shared the statement with my son he said, "WHAT! are they kidding?" If some think that Sunday morning service attendance is what it takes to be a "committed Christian" then I am sorry for them and the smallness of the faith that it takes to believe that. What do some say to the single mom who must work at her job,the very one that God allowed to her have, but must be absent on Sunday mornings from her church? Is she not a "committed Christian"? What do some say to the elderly shut in who no longer has the eyesight to read His word or the ability to drive to services on Sundays? Are they no longer "committed Christians"? What do some say to the thousands of doctors and nurses who work in our hospitals to provide care to even the youngest of His creation on Sunday mornings? Are they not allowed to be in this definition of a "committed Christian"? What about the soldier on the battlefield who protects our very freedom each and every Sunday morning? Is he not a "committed Christian"? What about the child in Africa who has no church to attend on a Sunday morning and no Bible to read in their language, but has a faith in the very God who they see in the clouds, across the plains, and feel in their hearts? Are they not a part of this definition of a "committed Christian"? What about Emmit Smith, Deon Sanders and the many, many, many other professional athletes who live their faith daily and serve the God who does not belong in that box? I dare say their influence and their faith reaches thousands of young people daily as they share their testimonies of who God is in their lives. Honestly, do some people really think a professional athlete has no chance to be a "committed Christian"?

Too many times in our society I believe that we place limitations on who the God of this universe is. We like to tell Him where He can show up, what He is allowed to do, and where He should not go. We have no right! Please allow Him to show up when, where, and how He would like and then sit back and see what He can do.

To be a committed Christian it takes so much more than church attendance. It comes from a belief in who He is, what He did for us, and how much He loves us. It has nothing to do with attendance, religions, regulations, or requirements. It is about Jesus. Pure and simple. It is about your relationship with Him not about how many weekends you are away from your place of worship. Worship comes from our heart and it can and does take place outside of the church building as well as inside of it. This is what I choose to teach my children. I choose to teach them about building their relationship with Christ regardless of where they are and that can take place on the ballfield, in a restaraunt, on your couch, in the trenches, on a plain in Africa, in a hospital or any other place we are looking for Him( as well as in the pew on a Sunday morning).

Please don't take this the wrong way. We all have a right to our opinions, but the only one that matters is HIS.

Amazed

Amazed at my God. Daily. His presence in my everyday life. My last post was written before the first two comments were left on this mornings early post. I wrote my last post about "A little something I have learned" for another family who is struggling with other's opinions about the way they have cared for their children. Amazed is all I can say when I think how He already knew what would thrown at me and how He had been preparing my heart in advance. As I was typing my post and composing it "anonymous" was reading and typing their comments. My post began at 2:30, but I did not finish due to numerous phone calls until after 3:00 and then I turned off my computer and went back outside. Their comments were posted at 3:19 and 3:31. Amazing. Don't tell me He isn't real because I KNOW that He is.

A Little Something I've Learned

Today I am at our house. Alone. Just me and the mess. I came to try and make a difference(again). After a few moments of tripping over 2 by 4's and slipping in sheet rock dust I came to a realization. At this point trying to establish some type of order in this uninhabited home is ridiculous. So I laughed at myself and walked outside to really get dirty. That's right I have picked back up my rake, my hoe, and shovel and I have decided to continue to playing in the dirt. At least I can see the progress I am making out there( all be it slow going).

Remember the hallelujah chorus I was singing but a mere two weeks ago when I heard a knock at my door and there stood the three men who I thought were the answer to my prayers? The contractors? Well, to make a long story short we decided against hiring them to do the job. When they returned to me a bid that more than DOUBLED what I believed was a fair and generous amount to spend on the remainder of this project I could not with good faith spend that kind of money. So we began to plug away again an hour here and an hour there. Then we were sent another knock at the door. This time the men that stood before me and looked at what was left to be done quoted us a very fair price and we agreed to give them the job. The only problem was that they could not start until around the 4th of May. So upon the impending start day to complete our bathroom remodel I am planning(or hoping) to move our family back to our home about the 3rd or 4th week of May.

Through this journey we have been on for almost 2 years now I have come to learn many things. One of the most important things I have learned through this process is that EVERYONE has an opinion. One of the next most important things I have learned is that I do not have to take to heart EVERY ONE'S opinion. Not everyone who has something to say to you or about you does it with a helpful heart. Some people just like to be heard and in being heard tend to pass judgement. I am truly learning something I have always said that I believe. Everyone has good sides to offer you and bad sides to offer you. I have tried to live my life in such a way that I take the good in people and appreciate it, listen to it, love it, and become thankful for it. The bad that they offer I just leave where they left it and walk away. Never in my life has this become more true than now. I have come to a place in my life where there is no place for passing judgement on others and how they live their lives or the decisions they make. I truly believe that all of us are here doing the best we know how with each situation that the Father has handed us. In my own life and in our Ashley's Story I am striving to do and to make the best decisions that I know how to make. I seek and I search for guidance and I pray that He takes care of the rest. Whether it be the transplant center we chose or the contractor we hire to finish this silly house I am trying to do what is right for our family according to what He shows me. It may not be right for everyone, but it is what I feel led is right for my family.

So I say all of this not because anyone has left an unfair comment, opinion, or judgement, but because I look around at the world I live in with my Ashley(the transplant world) and I hear and see many who have opinion's to give to those of us who are trudging along this path. Some of them are helpful and insightful, but many of them do nothing more than cause doubt and pain to an already struggling family. I would like to say to my fellow transplant families that I support you, I want to encourage you, I pray for you, and I am pulling for you. I know this path is difficult. It is hard and it hurts, but it also gives us hope. It gives us time with our children, and if we allow it to it teaches us about the important things in life. Things like family, true friends, true faith, and appreciation for all of the above. You may be making decisions for your child that others disagree with and will pass judgement on you for making, but rest assured that I KNOW with all that I am that the Father specifically chose you to be the parent to your child and He has placed you in this position because He trusts you with something very precious to His heart. Your child. Keep looking up. Keep walking along side your brave babies, and keep in mind there is another family that has been there and we love you and support you. May God bless you as you log another day of memories inside of your heart. Trish

P.S.
I am off to play in the dirt because it feels good to get dirty every now and then. Take care.

Home and Ready for Bed?

So it is 2a.m. and we have just arrived home from our trip to Dallas. Can you believe that now that we are ready for bed our sweet little Ashley is feeling well rested from her multiple naps today and is ready to play? Of course you can. She may have a nasty cold but she is still as ornery as ever. Even though I am exhausted I can't resist those chubby cheeks and that amazing smile. I tried tucking her into bed and she just grinned and waved(and coughed) at me and convinced me that I must not be as tired as I think I am. So I suppose we will be awake for a while watching movies, reading books, rocking, talking, and anything else my little blessing feels like doing. The rest of the family is already snoring and I sit her listening to them all as I type.

The Tarheels had an amazing tournament this weekend. They went 4 for 4 and won in the championship game 12-1. Blake played so well and we were so very proud of him. I think he ended up with 12 RBI's today. What a blessing it is to be home and to be able to watch him play again. On the way to the games we had a long talk about opportunity, talents, and potential. I try to encourage him not to waste what God has given to him, but to use every moment of it to give glory to God and to be thankful to be in the position that God has placed him in. If you only knew this kid and could see how dedicated and how driven he is. I am so thankful for the person he has become. One of the things I love the most is watching him hang out with the guys and just be a kid. We have a great group of families involved on this team and we feel so blessed to be a part of them. God has really given Blake a gift with the Tarheels and their coach.

Allie stayed home and rested, rested, rested. She is feeling so much better. We talked all throughout the day and by bedtime she sounded like a new kid. I tucked her in over the phone and promised to kiss her forehead when I got home. She giggled and said, "You sure love to do that don't you mommy?" I just loved that!

I think Ash looks good after today. She was able to sleep a lot and her coughing all though it is still hanging around seems to be slowing. Her lungs sound clear today and she has remained fever free. I really expected to be admitted to Children's at some point today, but she continues to do what she always does and fight, fight, fight. If the cough is still lingering on Monday then we will go in for a chest x-ray to keep an eye on any possible pneumonia trying to set in. I am praying for it all to go away and for her to return to feeling good.

Tonight or this morning I found out that our precious friend Daisy(who received the same transplant as our Ashley last summer) has been diagnosed with PTLD as well. They are currently in the PICU in Omaha, but her spinal tap came back clear and I am so thankful to know that. This is the same thing as the four tumors in Ashley's lungs that have caused us to go through chemo therapy. I pray and pray and pray that Daisy will not have to do chemo. Please remember to pray for her as you pray for Ash. If you could see this beautiful little girl and all of her curls you would fall instantly in love with her. She is so precious and she leaves wonderful messages for our Ashley about jumping, jumping, jumping together and picking apples together some day. I look forward to that day when our two girls are able to do those things together. What a blessing that will be.

I guess I am going to go lay down next to my sweet Ashley Kate and hang out with her for awhile. I hope to convince her that sleeping would be a "fun" thing to do, but if not then I will just be thankful that I get to be the one to stay up playing all night with her. Thanks for loving her today and for remembering to pray for her and her friend. May God bless you and your families. Trish

Day Trip

We are getting ready to make a day trip to Dallas and will be returning this evening. I just wanted to let everyone know not to worry. Ash and I will be staying in the car together and we will not have access to a computer until we return home this evening.

Dave stayed up with Ash last night and allowed me to sleep all night. He is such a blessing. I really needed the rest and I know that she is in good hands with her Daddy. This morning she is fussing at me a little and I think she is getting on to me for not being there with her when she woke through the night. I slept on the couch and to be honest I never even heard her wake. I know that she did based on the dark circles I see on my sweet husband's face, but he never let me know about it.

Thank you for praying for our sweet Ashley Kate. It means so much to us to know that their are faithful people around the world lifting her up to the Father. We continue to thank God for each of you who love her so much and who love Him enough to care for others. I will talk to you all tonight when we return. Have a wonderful day and I pray you get to enjoy it with those that you love. Take care. Trish

She doesn't Stand a Chance

O.k. so this is the reality of the situation we find our Ashley in. She doesn't stand a chance. It is almost certain that she will pick up something from somewhere and that is exactly what has happened to her this week. It doesn't matter that I have been overly protective of her and as careful as is possible with her. The world is saturated by germs and she has very little on board to defend herself from them. So what is a mom to do? Pray. That's what I do. I pray that this "little" cold doesn't go any further. I pray that the cough will disappear. I pray that she will wake up and feel like herself again. I pray that she will be able to breathe clear soon. I pray and pray and pray.

Ash still feels so bad. Her nose is stuffy. Her cough has moved into her chest. She has no energy. She can't stay awake. Her throat is sore and she looks scared. To be honest I am scared too. I keep asking how can I help her? The transplant coordinator gave me the go ahead to add a couple of over the counter meds to her schedule. I can't tell that they are really helping yet. I waited and waited for an answer from our pediatrician and oncologist, but it never came and now we are into the weekend and our only avenue for help will be the ER. I pray it doesn't come to that. Please, God let this all go away. Help her to wake up feeling strong and well. Please, please, please protect her tiny lungs from anything developing in them.

I feel helpless. The chemotherapy has basically rendered her helpless. Her white count is now lower than it has ever been and she has entered the nadir period. Her steroid has taken the place of her own adrenal system and I fear that the huge drop in the amount given during chemo to her normal dose has hurt her defense. I realize that I will have to get used to this, but I have witnessed her ability to breathe on her own slip away too many times to take it lightly. It makes me nervous when I see her struggle. Ashley's life(especially as we battle the cancer) will be a series of ups and downs. This week happens to be a "down".

In the overall picture I feel as though she has been very blessed to have been home this long without getting too sick. I know we have been hospitalized twice for cancer related issues, but I think that God has really protected her and given her some really great days. He has allowed her to laugh, to play, to go outside and feel the sun and the wind on her face. Today she got to watch a couple of butterflies "dance" from flower to flower. That was a blessing. She has enjoyed her time at home and we all have enjoyed being together for 5 weeks now. I think that is GREAT! God has been so faithful to our family and I am so thankful.

Dave and I took her for a walk tonight. She seems to be the happiest when she is outside. I love to watch the expression on her face as she encounters new sights and new sounds. Everything is interesting to her and I can see her little eyes trying to take it all in as we stroll along. It really is great to see the world through Ash's eyes. Oh, how I love this baby. She makes life better for us all.

Tonight if you think of our Ashley would you please pray that she might have what it takes to fight against this cold. I so appreciate each prayer that is sent to the Father on her behalf. I know He hears them and I see His hand working in her life daily. It is an amazing thing to be a part of. Thank you so much for choosing to come and love on our baby. Good night and God Bless. Trish

Being me Means Being a Mom

Today I am at home(you know, grandma's house) busy being me. That means I am busy being a mom. To some my life may not seem glamorous. It may not seem like its adventurous. It may not seem like I do anything that important, but I would have to argue those points with you. Most days my mornings start out with glamour. Not for myself of course, but for my two girls who were born to look like a princess. Each day I work my "magic" on Allie's beautiful head of hair and send her out the door to school feeling like shes beautiful. Then I turn my attention to our littlest princess. Picking out just the right shade of pink in her pile(since we live off the floor in grandma's guest room) and a giant matching hair bow to wear around the house. Once the girls are looking and feeling glamorous I begin the adventurous part of my day. If you could see the "mountains" of laundry and toys and baseball equipment I must climb over every day you would agree that my life truly is an adventure. I dodge whatever is lurking under or behind each pile as I try to locate the things we will all be needing throughout the day. If you have ever turned a pair of your eleven year old's baseball socks right side out before throwing them into the washer then you know the level of danger that is involved in this life I am living.

Now to the important part of my life. The part that I am convinced is making a difference in this world we live in. My days are full of listening to their little mouths run constantly. Loving on them whether the be smelly or shiny clean. Loading laundry, diaper bags, back packs, baseball equipment, and whatever else the think they might need done. Liking every single aspect of this job, and learning to do it all to the glory of God.

No matter if I am rubbing Blake's feet at the end of a long tournament, making a mug of chicken noodle soup for Allison while she is under the weather, or changing a stinky, yucky ostomy bag that covers up our Ashley's amazing new gift as long as I am modeling to these young people a servant's heart then I am doing the most important job in the world.

I wouldn't give up this job for any other. I am blessed beyond measure. Not only does my cup runneth over, but so does my heart. I just can't imagine be anyone other than me just being a mom to my Blake, my Allison, and my Ashley.

Missing the Gang

After living in the PICU for almost 6months Ash and I often find ourselves "missing the gang". The nursing staff became more than our nurses. They became our friends. Each day we looked forward to seeing who had "picked us" to take care of. The ones who didn't decide to "pick us" that day we tried to make feel like they would really be missing out if they didn't at least stop in to say hi. Now that we have been home for over a month(can you even believe that?), I am starting to wonder just what has been going on with every one. So many of the "gang" had exciting things happening in their lives and we have been wondering how things are going. Several were planning weddings, others expecting babies, some trying for babies, and a couple waiting on grand babies. Others just kind of became like family to us while we were so far away from ours and I genuinely came to love them and their children. So tonight I just wanted to tell the "gang" that Ash and I think of you daily, pray for you often, and miss ya like crazy. Not that we want to come back to the PICU anytime soon, but we do kind of look forward to our visit in July just so we can stop in and catch up on all that's been going on there without us. We also want to say thanks for taking such good care of us and helping those long, not so easy days become a little better. You girls be good and take care of yourselves.

Its not only our nursing staff that we miss but also our transplant friends. I pray for those little people daily and I know that our paths crossed each and every one of theirs for a reason. When I close my eyes I see those little faces and I smile just knowing that we had the opportunity to love on them and their families. So Ash wanted to say hi to Kiley, Skyler, Taylor, Daisy, Caroline, and Gavin. We love you all and hope to see you again.

Not a day goes by that we don't think of the friends we were privileged to know but lost. I think of their mommies and daddies and I pray that God wraps His arms around them and floods their hearts with beautiful memories of their children. We will never be the same because we were blessed by knowing your little ones. Some we knew well, others only from across the hall, but each life was precious to us and we grieve the loss of our friends. Thank you for letting us be a part of your lives.

Ash seems to have perked up a little tonight. She and her daddy are reading his interpretation of "Good night Moon". At this point she doesn't really understand all of the extra rhymes he likes to throw in so I am willing to ignore them, but when she becomes a little older I am going to insist that he sticks with the ones written on the pages. She just loves to listen to the story especially the part about the "quiet old lady who is whispering, "Hush". It makes her grin every time you say the word "Hush". I'm just thankful she is quietly sitting on his lap and not fussing from being uncomfortable at this point.

On the other side of grandma's house our Allison is all tucked in with a very high fever. I have no idea what is making her so sick, but her cough has turned into something more. She is moaning in her sleep and she did not make it to tumbling practice tonight because her head hurt too bad. She asked if she could go lay down around 4:00 this afternoon and she has been sleeping ever since. I don't think she will be attending school tomorrow so I will be running from one side of the house to the other taking care of my girls who are both a little under the weather. I have to keep them separated because I can't risk Ash getting what Al has. My hands are raw from scrubbing them as I go from one to the other. My yellow mask has become a permanent fixture on my face. I just pray that I can effectively take care of both my girls without transferring germs from one to the other. Life is NEVER boring around here. I think it is going to be a long night.

I just wanted say good night to you guys and thank you so very much for praying for our little pickle. We are still waiting for a decision to come from her oncology team about whether or not she is safe outside of the hospital for now. We should know more in the morning. Hopefully we can just keep her at home and wait this one out, but whatever is best for her is what we are willing to do. Take care guys and we pray you rest well. Trish

Waiting, but not by Myself

So many times throughout her life I have been forced to sit and wait. Things that I had no way to accomplish in my own time, my own way, or with my own power. Waiting has been hard, but each and every wait has brought blessing. Sometimes the blessing has come from brokeness. Whether it be her broken body, my broken will, my broken spirit, or my broken heart. Other times blessings have come from no where. No expectation. No foresight. No warning. Just blessings because of His love for her or for us.

Once again I find myself waiting today. Waiting for her to feel better. Waiting for direction from her doctors. Waiting for answers or solutions to helping her begin to feel like herself again. I have held her all day and I have waited. She feels so yucky. Her local doctor called to tell me her white count had fallen even farther today. It is now a .7. It is so frightening to see her this way. I know she is vulnerable to each and ever germ that comes her way. She continues to be so weak that she can't stay awake. Her cough wakes her as she tries to rest and then she begins to fuss. I eventually laid her in her stroller and pushed her into the bathroom this afternoon so I could jump in the shower before picking up the kids.

Its been a hard day. Harder than most, but not as hard as some have been. I continue to pray for her as I hold her. The good part about having to stay so still all day as I hold her is that it gives me lots of time to talk to God. I have been able to pray about things that I do not understand. Things that seem to have no solution. Things that I know in my heart He has all worked out for us, but that I can't seem to figure out. Somewhere in the middle of all this He decided to once again bring us a blessing. One of those that we never saw coming, but only He knew we desperately needed. I love that about Him. I love that He can feel the burden on my heart(one that I have not shared with anyone else) and lay it on another's heart(someone I have never even met) and in only His way He brings the two together to bless both. Only God can do things like that. So let me say Thank you. To the Father and to the one who allowed Him to use you today.

I continue to wait to see what we will do with our Ashley. Will they call and ask us to bring her to the hospital? Will they call and tell us to wait it out some more? Will they decide on a medicine that might help her recover from this? I have no idea what they will all decide. I only know that I am getting pretty good at this waiting thing, and I am learning that as long as I don't sit and wait alone He can do some pretty amazing things.

Contemplating Exile

Tonight I am trying to decide if Ash and I should "exile" ourselves to my mom's RV. Everyone around here is feeling crummy and I am not sure if this is the safest place for her to be tonight. When I say RV, I am definitely not talking about one you might have in mind(you know the big green one in the movie). Its not the kind that has been closed up all winter and is full of dust and spiders. My mom actually lives in her RV and it is beautiful. Very clean and very comfortable. Since her white count is low tonight and she already feels bad I am afraid that hanging out with those who are coughing and complaning of headaches and sore throats is not a good idea. Dave, Blake, Allison, and Grandma are feeling a little under the weather. Ash already has a cold to go along with her weakened immune system so perhaps I should escape into the Rv for the next couple of days.

She perked up a little tonight when her dad came home. I saw her smile for the first time all day when he said,"Hi, little pickle!" It made my heart glad to see that smile come across her face. I missed it so much today. Nobody makes her as happy as he does. I think she has already figured out that he is just another kid. He dances, "sings"(we all know how good he does that), jumps around, acts ridiculous, and anything else he can think of to make her happy. What a lucky girl she is to have this guy for a dad. He sure can make you smile even when you think you don't have anything to smile about.

Even though Ash is looking pretty rough today and feeling pretty rough she has no fever and she has not vomited all day long. I am counting those things as blessings today. She has spent most of the day sleeping and I hope that is a result of just feeling weak because of her low counts. I just imagine her healing inside as she rests. I watch her sleep and count the number of breaths she takes. As I count I find myself praying and thanking God for each and every one that He gives her. It amazes me to look at her. She is so tough but yet so weak. She is little but yet she is now so big. She is still struggling but yet she tries to convince me that its easy. I tell her over and over again how proud I am of who she is. I tell her how much I love her and how much Jesus loves her. Sometimes when I try to pray for her I am speechless. Humbled at His handiwork. Amazed at her design. The words don't come. I am so glad He knows exactly what I would say if there were only words. I am still so humbled to be in this place.

I can hear her fussing in the other room so I guess thats my clue to wrap it up tonight. Let me say thank you for reading her story and for praying for her today. I don't know where we would be if you were not praying. I appreciate it so very much. Good night and God bless. Trish

Its Been One of THOSE days...

... for my sweet Ashley Kate. She just feels so crummy. After not sleeping for nearly 48hours she decided to take a 12hour nap. I finally woke her around 12:30 this afternoon because I missed her and she was beginning to worry me. We sent labs not once but twice this morning and had them faxed to 3 different hospitals. No word. I looked them over and can't figure out what is going on with her. I began her feeds again around 1:00 and she has not been nauseated today. I think that is progress. I placed another call to the transplant center but missed the return call before they left for the day. They didn't sound concerned about anything so I am left to reason that Ash is feeling bad probably due to the chemotherapy. Her white count dropped from 9.5 Monday morning to 1.3 this morning. I know our oncologist is telling me that none of this related to her cancer drugs but to be honest with you I don't believe him. Ash always feels crummy somewhere between day 4 and 5 post treatment and the drop in her count this morning makes me think I am right to think its related.

I wish I could report to you that she has managed to play through this one, but I am afraid it has hit her harder today than ever before. When I look into her face today I think she LOOKS like a cancer patient. Her eyes do not sparkle today. Her cheeks are not rosy only puffy from her steroid. Her body is lethargic and tired. My heart is broken as I hold her and try to comfort my little lump. I refer to her as a lump in the most loving way.

On days like today I almost get angry at the cancer cells. I want to yell at them. I want to tell them to disappear and leave this beautiful baby alone. I want to squish them myself for hurting her. I feel like stomping and throwing a fit for her because she doesn't have the energy it takes to do it for her self. Instead I will just hold her close and kiss her little head. I will pray that one day we will wake up and be told that it is gone and she will be fine. I will picture that amazing smile that she is so willing to share with us all. I will let her know that I am there and that I am loving her through this day. I will try to hold back the tears that are on the brim of my eyelids so that I do not cause Blake and Allie to be sad. Unfortunately for my sweet Ashley Kate it has been "one of THOSE" days. Maybe tomorrow will be better?

Balancing, Weighing, Deciding?

I find myself in a constant struggle trying to balance, weigh, and decide all of Ashley's behaviors, signs, and symptoms. Is it? is it not? Cancer related? Transplant related? Nuero related? I never really know and I struggle trying to figure it all out. The truth is that no one really knows what is related to what when it comes to my sweet Ashley Kate. She is complex. I remember going into the local ER one night and her nurse seeing her undressed for the first time took a step back and said,"What is that?" "Oh no," I thought to myself. "We are in trouble if trained nursing staff are afraid of her." When Ash is dressed many people have no idea she has had to fight so very hard to live. Obviously she doesn't look like shes almost 2, but you might not know she is supposed to so that never seems to alarm anyone. Its underneath her clothing that the evidence to her struggle hides. I can't tell you how many occasions there have been when I have had to reassure our nursing staffs(not ours in NE, they of course are very used to seeing all the related bells and whistles of transplant) that all is O.k. and if they will just do "such and such" we will be fine. I can't fault them. As I said before she is complex. It is intimidating to see something so little covered in so many scars with so many things(like intestine, central lines, mickey buttons, ostomy bags, etc.) coming out of her and hanging off of her. Dave doesn't even know how to do everything that has to be done to care for her(but he is learning).

My biggest weekly dilemma is her fluid balance. Is she or is she not dehydrated? Dehydration is such a dangerous thing especially in a transplant patient. Ash has spent at least a 24 hour period each and every week since returning home from Nebraska vomiting. She continues to try and play, she even laughs, but she vomits. I usually turn off her feeds and hook up Pedialyte to try and keep her hydrated and give her some electrolytes, but the nagging fear of severe dehydration haunts me the entire time. I do not rest. I do not sleep. I spend the time trying to figure out is this normal chemo related behavior or is she getting sick with some type of virus? I never know and anyone I call to ask never knows either. Why is she vomiting? Oncology tells me its not her chemo, but it started the week we began treatment and has continued each and every week since. She never gets sick until day 4 or 5 post treatment and they tell me this is not related to the cancer treatment. Then why is it so regular and why did it begin the very same time we started giving her cancer drugs? It doesn't make sense to me. If it is a bug or a virus then it should be showing up in a lab or growing out in a culture, but its not. I can't figure it out. All I know is that this morning I have sent more blood to the lab trying to avoid a hospital stay. I am now waiting on results to see if we need to have IV fluids running or not. I sit. I wait. I balance. I weigh. I pray because I don't know what to decide to do.

Then you have to throw in whatever nuerological stuff is going on. Ash has definitely sufferred from some type of nuero damage. When it happened we are not exactly sure. What happened no one knows. What it is no one has been able to figure out because she has much more pressing issues to deal with. The confusing part is this: Does she shake and tremor because she is dehydrated? Does she shake and tremor because of the high level of powerful drugs she takes on a daily basis? Does she shake and tremor because of the nuero damage? No one knows. As I shared she is very, very complex.

This morning the only thing I know for sure when it comes to my sweet Ashley Kate is that I may not have it all figured out and I may not have all the answers I need, but HE does. He knows exactly what is happeninig and why. All I can do is depend on Him and pray He guides me to make the right decisions for her. I could and she could really use your prayers today as we try and figure out what is going on in her little body. Right now she is sleeping for the first time in almost 48 hours and I am running more blood to the hospital for another lab. Thanks so much for checking in on her. She continues to teach me to be content in whatever situation I find myself in. No matter how bad she feels she ALWAYS manages to smile. She NEVER fails to show me that its all going to be o.k. I think she trusts me way more than I trust myself. I pray my faith and trust in Him are as a strong as hers is in me. Take care today. Trish

A jittery ball of jitters

I went to the house after work today and found my Ashley Kate looking absolutely fabulous. I was jumping around and acting goofy to entertain her and my foolishness was rewarded with the biggest best belly laughs I have ever heard from my Gherkin. It was a real blessing to my heart to see her interacting, laughing and generally loving her life. Living in the land of daisies and rainbows as I do I don't usually have room for any negative thoughts about my Gherkin's condition, however lately I have to admit I have been worried about what long term neurologic damage she may had suffered during her heart problems earlier this year. There are so many physical and mental skills she had before her heart operation that she has since lost. Yesterday I was so thankful to hear that she had clapped her hands. Today I was so excited to see another lost skill renew itself. One of Ash's favorite activities while stuck in the hospital bed was to take two cups and bang them together. Since her heart trouble she has not done that and has avoided having anything in her hands at all. Her hands have not been working together. Today I handed her a cup and she took it. So I handed her another and was surprised to see that she took it as well. Then she began to hit them together and laugh out loud. It is such a small thing to hit two cups together, but to me it was absolutely amazing. I was so proud of my Gherkin. I know without a doubt that once she has finished her chemo we will begin to see much much more progress. I am looking forward to the day her little body is free of so many of those drugs. As far as chemo goes, today was a tough day for Ash. She has been throwing up alot. She has worn more clothes today than I wore all of last week. She is having neurologic side effects to something which is causing her to have involuntary muscles spasms throughout her body. At one point Trish described her as a "jittery ball of jitters" which I think pretty well summed up how she looked today.

Today I thank God for all he has allowed our pickle to learn. For all blessings He gives me each day. For always being faithful to me and my family. For each person who continues reading Ashley's Story and continues to pray for our beautiful little pickle.

Goodnight,

DAVE

Finding beauty in the midst of Chaos

This morning Ashley and I are in at the house waiting on another plumber to show up. They had no idea what time they would be here so we must spend the day at the house, but not inside of it. It is still not in a condition where Ash can enter. So we are finding things to do outside to occupy our time.

I looked around and the state of my flower beds caught my attention. If you were to drive by our house you would probably shake your head and wonder how and why they have become so negletected. You would see plenty of leaves left over from the fall, lots and lots of saw dust from the remodel, and weeds growing from every corner. In the middle of the gardens you find "Jedidiah" and "Goliath"(the two prized growing cabbages that somehow found themselves a home in a place I would not have chosen), but then as you approach our front porch you stumble across what inspired me. In the midst of all of the ugliness that has been left to develop over the past few months while I was away you discover what brought me great joy this morning. My favorite plants in my flower beds. There are five of them. All doing their best to grow up in the middle of this mess. My hostas have returned. Last spring they were planted among great beauty. Surrounded by flowers and other plants. Today they are surrounded by chaos,but their determination to bring beauty to this place made me smile.

As Ashley played in her pack n play I worked. She is having a great time. When she becomes tired of sitting she falls back and watches the birds. You can see her absorbing the sounds around her trying to figure out where they are coming from. I began to rake leaves, weed the beds, and prepare the soil. She continued to play, coo, and enjoy life. Some may wonder why I would bother preparing to plant in front of a house we don't even live in, but if you only knew what I knew. I can see something that those who drive by can not. I can see what the beds will become. I have been here before. I know that with a little bit of care it can and will be beautiful again. It won't happen overnight, but it will happen. In a few days with a lot of hard work the ground will once again become ready for me to plant the flowers that will bring beauty to the chaos. How nice it will be for the plumbers and contractors and painters to walk up the path to the front door surrounded by flowers as opposed to weeds, leaves, and saw dust. Just the thought of it brings me joy. I know if I were coming to work here that it would make me happier.

So today as Ash plays in the sunshine and listens to the birds in the canopy of trees above I am preparing the soil in our gardens. Just as the Father continues preparing the soil of our hearts. He sees things in us that others may not. He sees what can and will become with a little bit of work. It may not always happen overnight, but it happens. He continues weeding the parts that don't belong and before you know it nothing but joy and beauty blooms from within us. It makes me laugh how He speaks to me through nature. I think I am becoming old. I sure do enjoying working in the dirt and talking to Him.

A slip of the tongue

I was so excited when I picked up the kids from school today. I couldn't wait to share with them that Ash had learned to clap her hands again. I knew they would be so happy for her, but a slip of the tongue stole the moment I had been waiting to share with them. I wish I had been more careful with my words, but before I realized it they were out and the look on their faces told me how shocking the news was for them.

As the kids jumped into the car I said, "Ashley clapped her hands today for the first time since her heart attack!" That was it. I had no idea that what I said would catch them so off gaurd. I heard Blake say in a tone of voice that caused me to look at him in the mirror,"WHAT HEART ATTACK?" The look on his face was one I hope I don't see again. He wasn't angry, but very, very shocked and irritated that he had never been told about this. The concern and fear in his eyes was horrible and I tried to ease his mind. I shared with them in a very light hearted voice the events that took place in January and then tried to quickly turn the conversation toward the positive and exciting part about her learning to clap again. Allie didn't seem to mind not knowing as much as Blake. She simply said, "Well she is ok. now and she can clap again so I'm happy." Blake had more of a struggle with it. I could see that my words and this new information scared him. It scared him a lot. I just continued to share with them how God had been so very good to us and that He had allowed Ash to come back from so very tough times after her transplant.

During the tougher days Dave and I struggled when deciding what to share with Blake and Al and what not to. There were so many ups and downs and their hearts were already carrying such a heavy burden. We wanted to be honest with them, but yet protect them from all of the painful details. I believe we chose not to use the words cardiac arrest, CPR, or heart attack because I felt those words would scare them. We simply told them Ash had become sick again, had gone into surgery, and was back on the ventilator, but that she was getting stronger every day. Maybe we made a mistake? Maybe we should have given more information to Blake and allowed him to know more of the details? There was just no easy way to go through all that we did, and I thought we had made the best decisions we could at the time. Tonight I am praying for my son. Praying that he will forgive us for keeping things from him. Praying that the fear I saw in his eyes never has to return. Praying that he can rest in the knowledge that God is the one in control of his baby sister's life.

This afternoon Blake spent a lot of time with Ash. Just sitting next to her on the floor. Letting her grab his face over and over again. Playing, talking, and enjoying time with her. He eventually laid next to her on her palet and watched one of her movies with her. He just needed time to be close to her and I stayed back and allowed him to love on her. I watched from a distance. Close enough to enjoy her giggles, the look of love in his eyes, and the joy on her face. God was good to me today and gave me those moments to cherish and to make a memory of. It came about in a tough way, but it ended in a precious one.

Ashley's future is unsure. I have no idea if the cancer will be gone and she will be in remission at the end of chemotherapy. I have no idea it she will stay out of rejection. I have no idea if she will stay away from serious infection or virus that may cause us to lose her. The only thing I know is that every moment, every minute, every day, every experience is a gift that we will cherish and the rest is in His hands. I wish I could promise my Blake and Allie that their sister will always be here to grow up with us, but I can't. I wish He would promise me that all three of my children would be here with me forever, but He doesn't. I am just living every day as if it might be our last so that I don't waste any of it. I pray we have done the right things, made the right decisions, and given all three of them the right foundation with which to build their futures on.

Clap Your Hands!!!

"Clap your hands all ye people", because that is what our sweet Ashley Kate has decided to do today. Yeah, Ash! It may seem like a small thing to place your left and your right hands together, but it is a skill that our little one had lost for a while until today. I am being thankful for our small milestones because I KNOW that one day they will turn into BIG ones.

The last time our Ashley clapped her tiny hands together was the afternoon she went into cardiac arrest. My last memory of her clapping with joy in her heart came that day as she sat on my lap and we read or sang a book of Bible songs together. She would clap at the end of each page and then I would turn and start the next. Her breathing became more and more labored that afternoon as we sat in our "favorite" chair and played. This is when I first noticed something was changing in her little body, and it eventually led us to do an echo cardiogram, which led us to calling in the cardiologist, which led to attempting to drain the fluid that had built up around her heart, which led to a cardiac arrest, code, and CPR, which led her into heart surgery the very next morning. Wow, what a mouthful! All of this happened around the first week of January and this was the last day until today that she clapped her hands with joy in her heart and a smile on her face all by herself. I am so blessed.

Our Ashley has lost many, many skills she had before her transplant. We really believed she would wake up and begin to thrive once she had good, healthy organs inside of her. As you know if you have followed her story things did not go according to what we thought our plan was during her recovery, but they have gone according to His. He has brought her through many tough days and has worked many miracles and amazing things in her life and the life of our family that would have never been if she had done things the way Dave and I had planned. I have no idea if Ash will ever say the words, "My mama" again. I have no idea if she will ever speak again. I have no idea if she will ever learn to roll over, crawl, walk, run, jump, or read. All I know is that today she has regained something she had lost and I am grateful. I am so grateful to have her here. I am so grateful to be home with her. I am so grateful to be the one encouraging her as she learns or relearns things. I am so grateful to be her mom. I am so grateful, and I just wanted to encourage you with our good news today. We are so proud and I will be clapping my hands all day in honor of her accomplishment.

Thank you for your continued prayers. Our little pickle has come so far and she still has far to go, but I can feel the prayers of many encouraging her on a daily basis. Thank you for loving her. It means so very much to her mommy's heart. Have a wonderful day and clap once or twice for Ash. Take care. Love,Trish

An old Friend

That's what this journal and all of its readers have become to me. "An old friend" who I miss terribly on the days when I am not able to "talk" to it. What a long weekend it has been not being able to visit with you all. We ran to Dallas for the weekend for Blake's ball tournament and about half way there I realized we had left the computer on the counter. "Thats o.k.," I told myself. I was just planning on using the buisiness center in the hotel until we got there and it was shut down because their computer was broken. So I spent many moments over the weekend wondering what everyone must be thinking. Probably the worst because I haven't missed a day of journaling since "the call" came back in September. I am not surprised that we forgot to take the computer. By the time we had loaded all of the things that are necessary to take care of our baby gherkin there was literally no room for the family to ride. Dave was a little frustrated with me, but I know better than to travel unprepared for an emergency when it comes to our Ashley. We took more luggage then the entire Tarheel Team and its families! We were the last to leave because of all the packing and re-packing it took to fit the kids in around all of her stuff, but we are finally home and I have the family tucked into bed so now I can sit and "visit". Please forgive me for my lack of updates, and let me say how very much I missed you.

Anyway, the Tarheels fell short in the championship game and walked away as the runners up. I was so very proud of them all and of our Blake. He woke up with a head cold on Friday morning and it only got worse through the weekend, but you sure couldn't tell it by the way he played ball. I think he played a very strong tournament and I am so proud I get to be this kids mom. Unfortunately the cold he caught came from the one Dave had last week and I had been praying that Ash would not get it. I guess that is a little unrealistic to think that one of us could get sick and she manage to avoid it. So yesterday she began coughing and sneezing right along with her brother. It is a little frustrating because we are all so careful with her and around her. Blake has been wearing a mask since the first cough came out of his mouth, but she has a very low white count and very little immune system to fight even the smallest of bugs off. Now my prayers for her are that it will just stay a "little" head cold and not progress into her chest or into pnuemonia. To see her smile and watch her play you would never guess that she doesn't feel good.

About half way home we woke to the sweetest sound you have ever heard. Grandma was driving and the rest of us were all fast asleep until our Ashley woke up and began to giggle. When she opened her eyes she was surprised to find that her Daddy had slipped into the seat next to her and it tickled her so that she could not contain her belly laughs. Before you knew it Grandma, Daddy, and Mommy were all smiling ear to ear in the dark listening to our little pickle giggle with glee. How precious she is! It still seems like a dream to be home with her. She is the cutest thing you have ever seen and she just loves life(even on her bad days).

So now that we are home I am looking forward to "talking" with you all and catching up on how you are doing. Let me share with you that Ashley's Story and all of you have taken up a piece of my heart and I am so glad to have you in there. Thank you so much for your concern and for continuing to pray for our baby even though there was no news for a couple of days. Next time the computer will be one of the first things I load because I honestly missed hearing from you all. I prya all is well with you and that you are sleeping soundly with your families all tucked in around your homes. Take care and may the Father bless you are you rest. Trish

Too Good To be True

There are days when it seems as though this life I am living is just too good to be true. Granted there are other days when it doesn't, but tonight is definitely one of my favorite "too good to be true" moments. I remember not too long ago when Ash and I sat in our hospital room, tears in our eyes, and a longing in our hearts to be home that particular Friday night so that we too may be a part of "Family Night". Guess where we are tonight and guess what tonight happens to be? Thats right, we are home(not ours, but home in Texas) and tonight is "Family Night." We have laughed, we have played, we have fellowshipped, and as I type they are still in the other room doing all of those things together. I am listening to the those people who I love the most in this world just enjoy spending time together and it is the most beautifull sound in the world!

We had frito pie, baked cookies to ensure a home run or two during this weekends tournament, played a few rounds of "pirate dice" and are now in the middle of a game of "jackpot" which Allie, Ashley and I happen to be losing because the boys won't help us understand the rules. The game includes some kind of secret sign, bluffing, and calling bluffs in order to win a letter in the word jackpot. The first team to spell the word wins. Obviously the boys are better bluffers( which some might call lying ) than we are. To tell you the truth I have yet to figure out what their secret sign is and we have had to change ours more than once. Ash is having a great time. She is sitting on top of the table playing peek a boo with a paper towel on her head. She is loving all the noise and chaos and so am I. I can't tell you how good it feels to be here, how good it feels to look around the table and see all three kids together, or how good it feels to have Dave grab my hand under the table and give me a wink. We have laughed so much tonight and the later it gets the crazier we become. I know I should make the children go to bed, but who cares about the rules when your having such a good time. I am truly blessed.

As I watch Ashley I realize that she has no clue about what is going on around her, but she is happy. She smiles that smile that causes joy to well up in our hearts. Everything makes her smile and laugh. All you have to do is say her name and she instantly starts to grin. It is so amazing to have her here with us. She ate green beans for dinner and drank her water like a big girl. We are so proud of her. God had done so much in our lives and I am so thankful for the time He is giving us to spend as a family. "Family night" really is a dream come true for Ash and I and it just seems "too good to be true".

I pray you all have had time with your precious families tonight as well. What a gift it is to be a parent and to have these years to spend with our little people. I thank you for checking on our pickle tonight and for praying for her today. I am going to try and get her to sleep now. Hopefully I will get to sleep some tonight as well. If you read my earlier post then you know how much I could use a little rest. Take care and God bless. Trish