Blessed Again

One of the biggest blessings to our family through Ashley's Story has been seeing the care and compassion of so many who have never met her. I spent my evening at a benefit concert for Ashley and watching the performers use their God given talents to help a little girl they will probably never even meet. It amazes me that they care so very much. To watch each of them use their talents to tell His story was a blessing to me. We know that so many worked long and hard to do this for Ashley and we thank you. I would like to thank Cindy and Matt A. for organizing the concert. You gave so much of yourselves for us and our prayers are with you and your family during this time. Thank you Amy T. for being the MC. Thank you David G. for running the sound. Thank you to the artists, Virginia Lawrence, Terry Petersen, Ty, Dave Pendergraft, Danny Ray Harris and the Second Generation Vocal Band for allowing God to use you and for sharing His truth. Thank you to all the sponsors of the event and to each who came. You have blessed us again. May you be blessed for your willingness to love our Ashley.

Goodnight,

DAVE

Bursting at the seams!

If my heart had stitches it would have surely popped a few by now. Our hearts are so very full of joy. Our home is so very full of laughter. Our family is so very full of thanksgiving. The Father continues to bless us with another and another and another day to make memories with our tiny gherkin. Ashley brings with her a joy that is contagious and immeasurable.

Last night our baby pickle chose to laugh and clap and play until 4:00 a.m. I laughed so hard at her silliness and her antics. It seemed as though she were mocking the very fact that her parents are now old and require a little sleep. She would only tolerate our eyes closing for a mere second before she would begin to giggle and squeal so loud that we had to peek. The peeking at her caused more laughter and SNORTING to spill out of this ornery baby. I talked. I explained. I pleaded with her to go to sleep. Each time she would reply with a very definite shaking of her head "No" and this would tickle her all the more leading to more laughter. I picked her up out of her crib around 3:30 so I could kiss her on the head and gently explain how very tired her mommy was. Her reply? The loudest, ugliest, manliest BURP you have ever heard. Yes, I have managed to raise a princess who can burp as loud as her daddy. That my friends takes talent. I laughed so hard at her I thought I was going to choke. Somewhere between 4:00 and 4:15 this morning she laughed herself to sleep. As tired as I was the joy in my heart could not be contained as I laid there and smiled in the dark.

This afternoon Ash has been up to her antics again. She loves to beat her daddy on the head. He lays down in front of her each time he comes home so that she might "show" him how very much she loves him. Today she added the sweetest thing I have ever seen to their routine. After hitting his head with both of her hands she began to lean her head in and rest it on his while holding the sides of his face with her hands. It was a real and genuine HUG. She did it over and over again. There is no mistaking her gesture. She had figured out how to hug her daddy all on her own. I promise I will snap a picture of it and post it as soon as I can. My heart was bursting at the seams!

The day only gets better and better. This evening Ash was laying on the bed watching baseball with Blake when she decided to ROLL herself over. Can you believe it? We are thrilled! We have spent close to 2 years working on this skill and she finally did it. Not only did she do it, but she did it all by herself with no prompting from anyone. We are so excited and are so thankful to see her getting stronger and stronger. God has blessed us with a wonderful day.

Her infection is healing. The site is still sore, but it looks much, much better and her ornery attitude shows us that she is feeling much better. I can't thank you enough for all of your prayers this week. It has definitely been a long one, but it has been packed full of God's grace. Your presence has made such a difference in my heart.

Allie is busy painting her art pieces this weekend for all those who would like to have one. She will enclose a photo of herself and Ashley along with a card sharing her heart with you and her appreciation for your love for her baby sister. She is so excited to make them for you. You are welcome to leave an e-mail address for us to contact you about them or you may also send your requests to the address on the front page of Ashely's story. Either way will be fine until we get them up and running on e-bay(thanks for the idea!). Your support is so touching and she can't believe people actually like her idea. You guys are so great. Take care and enjoy your evening. You are loved. Trish

Update from the Artist

Tonight as I was tucking the kids into bed I learned a few more facts about the naming of our Allison's signature piece of art, and I can't stop smiling.

I asked her what made her call the painting, "Waves of Grace". She told me she couldn't think of a good name so she asked Blake what she should call it and he said, "I think "Waves of Grace" would be a good name."

I went to tuck Blake in and told him I didn't realize he had named Allie's painting she made for Ashley's story. "Where did you get the idea for that name?", I asked. He shrugged his shoulders and said, "The national anthem I think." "The national anthem?" "Yeah. When I looked at it I started singing "yonder waves of grace". The waves made me feel like singing that song."
"Oh... Well I love the name and the painting." I said as I tried not to break out laughing. He had sung the words "yonder waves of grace" to the tune of America the Beautiful and I realized he had mistaken the actual words "amber waves of grain" for his own rendition of the song.

The actual facts just make the name and the painting all the more precious to a mom's heart. I love those two kids, and I love the way they love their baby sister. Now when I look at it I not only feel the "waves of God's grace" that have washed over Ash's life, but now I also have a wave of laughter that comes across my heart.

I can't wait for Ash to read this page of her story some day. I hope the story makes her smile as much as it does me.

Returning

The dates are set. The flights have been approved(Thank you God for working out the details and answering prayers). The appointments are on the calendar. Tests and scans are scheduled. So... whats the problem? After receiving all the details today I have tried to put my finger on what is making me feel as if I wish we didn't have to go.

When I think of Omaha I think of "the call" which gave us hope. I think of intimidation which is what I felt the moment I stepped through the doors with our tiny baby girl. I think of the empty feelings that washed over us as they took her from our arms and walked her down the hall. I think of surrender which is all their was left to do at that moment. A complete surrender to His will. Because we knew it was only if it were His will that she would be brought back to us. I think of our donor family. I was so broken for them as Ash spent that night in surgery because I knew their arms were empty. I think of anticipation. Anticipating what the moment would feel like as we looked at her for the first time in ICU. I think of the relief that we felt as we were reunited with her. I think of emptiness. This is how I would describe the way it feels to pour your heart before the Lord, holding nothing back as you plead that what you want just might be according to His will for her. I was so empty by the end of the first day. I think of struggles and miracles and hurdles and miracles and operations and miracles. It was like a never ending cycle. We had no idea what each moment of each day would hold. I think of the power of prayer. I think of support. It came from all over the world. I think of friendships that developed in the hallways, in the elevators, in the cafeteria, in the waiting rooms, in the bathrooms of all places! I think of growth. I grew each day with each and every experience. I think of pain. My heart hurt more than I ever knew was possible. I think of grief. I felt it like never before as we said good bye to so many precious children. I think of strength. I saw it in the faces of my friends as they left the halls of that hospital without their babies. To my precious friends, I think of your children so often and I will forever be changed by them. I think of joy. Our sweet Ashley faced each day with the spirit that He created in her. I think of admiration. I felt it for this tiny bundle of baby girl whom I rocked day after day. I think of longing to take her home to her daddy, her brother, and her sister. I think of the mountains she climbed and overcame and then I think of the valleys she fell into. I think of loneliness. Extreme loneliness that comes from being separated from your best friend, your partner, your spouse. I think of surprises. They came almost daily in the mail for our sweet Ashley. I think of home cooked meals and the thoughtfulness of the ones who provided them. Thank you for bringing them!

When I think of Omaha I think about God. The lessons He taught me. The miracles He gave to us. The gift He allowed to be given to our Ashley.

So tell me why do I hesitate to return? I don't want to go back just yet. I don't want her to be put to sleep again. I know we have to go. I know we need to know if the tumors are all gone. The answer awaits us in Omaha. I know they need to see her, but I have tried to swallow this lump in my throat all day long. I have tried to hold back the tears that keep stinging my eyes. I have tried to put my finger on what is wrong with me. Scary things happened in Omaha, but miracles were performed there too. God was still God in Omaha and I am sure He will go with us when we return.

Ash is finally sleeping! Shes still not feeling her best, but I can tell she is getting better. Thank you for your continued prayers for her. Each day she smiles a little more and those smiles are keeping me going. I am praying for sleep. We haven't gotten much of it this week and it is definitely slowing me down. I feel myself dragging from one room to the other. Dave is still at the office and the older kids are getting ready for bed. I know I should stay up and do laundry, but I think I will lay down and close my eyes too. Good night and God bless you. Trish


P.S. Thanks so much for the Christmas Card ideas. Allie is so excited about taking on that project. Her art work doesn't have a price. She said, "I can't tell people what to pay for it. That would be wrong!" If you would like one just let me know. She would love for you to have it
Just knowing you asked about it brought the biggest smile to her face. Thank you for that!

Waves of Grace

What are you looking at? Are you wondering why in the world I am sharing "this" with you? Let me explain.

Its a painting. The artist? My Allison. The name of her piece? "Waves of Grace". How beautiful. How appropriate. How precious.

This is not only representative of her talents or her passion, but it also represents her heart. Our beautiful Allison has begun to paint "masterpieces" in honor of her baby sister and the struggles she has overcome. Today she sold her very first painting, and she is so excited. My heart was blessed as she came to us and shared her vision for raising money to help her baby sister. She has carried a desire and a burden for Ashley's campaign for months. She has wanted to help do something for Ash, and this is her answer. I couldn't be prouder of this precious young lady who has designed a way to use the talents God gave her to give to her sister.

I sat and watched her paint this particular piece this morning and admired her from across the room. As she painted, and studied, and planned I thanked God for the passion He gave her. When she shared with me the name of her painting I looked at her and said, "How appropriate." "What does that mean?" she said. "It just means that when I look at that painting I can feel the waves of God's grace washing over me and it reminds of everything we have gone through." "Oh, I'm glad you like it."

I don't know how many she will actually sell or who outside of our family would even want to buy one, but none of that matters to me. What matters to me is to see the tenderness of her heart towards the baby sister she has spent her lifetime praying for. In my biggest of dreams I could have never imagined how wonderful a life God had in store for me. I have three amazing, beautiful, talented, precious children and I am so blessed to be their mom.

Our sweet Ashley Kate is a lucky little pickle to have been given this girl for her big sister.

Tonight I am hoping we all get a full night's rest. Ash is looking pretty sleepy to me and she has not been screaming(except for when I have to clean the infection site). I think she has worn herself out today. This has been her best day since the infection began, and I can't thank you enough for all of your prayers. It is my hope that you too have felt the "Waves of Grace" wash over you at some point in your lives as well. It is an amazing thing to KNOW that we have a Father who extends His grace and forgiveness to us. Good night and God bless you. Trish

Power of a Praying...

..."Blogging" community. THANK YOU!!! We did get a few hours of sleep sometime early this morning. Ash stopped screaming around 3 or 4, and I let her sleep until 10:00 this morning. When I began to wake her up she kept her eyes tightly closed, but shared one of the sweetest smiles I have ever seen. Once I picked her up she began to clap her hands. I couldn't help but smile just knowing we were starting out with a new and better day. Your prayers to the Father have been heard and as always He is faithful.

Her infection looks awful this morning, but she seems to be coping with it much better. One area of the skin around the button has opened up and is bleeding. She continues to experience a great amount of discomfort while I am working around her button. The slightest movement of her feeding tube causes her to scream and cry HUGE tears, but once I had cleaned and dressed the area, connected a new extension, and had her feeds up and running she was consolable and began to play. She is actually able to sit up quite well this morning which tells me either she is learning to tolerate her pain or it is beginning to heal. I have not gotten the go ahead from Omaha about starting the new antibiotic just yet, but I have called them and they are checking with our transplant pharmacist.

We did proceed with her physical therapy this morning and she did great. As I watch her become stronger and stronger with each session my heart becomes more and more grateful. I truly believe that for the first time in her life she is beginning to look "healthy". I can't explain how very good that feels. I know that Ash may never be what some may consider healthy, or normal for her age, but if they only knew how far she had come. This sweet baby girl has fought so very hard to survive, and when I look at her today I am overcome with gratitude. God has a plan for her and it is so much more than what I can even comprehend.

I borrowed the title of this post from the author Stormie Omartin. She has written a series of books called "The Power of a Praying _________". There are no words to adequately describe how precious you are to this family. Once again this "community" has stepped up to fill the gap for us. If only I could express the way I feel inside when I know that so many of you are praying for our sweet Ashley Kate. She is evidence that our prayers for others do make a difference. You have taught me so very much about the value of the words, "I'm praying for you". Tears are falling as I try to express to you how very much you are loved.

I wanted you to see the picture above so you would know what a difference you have made this week. She is smiling again(as long as we don't mess with the button), and it is because you care. Take care today. Trish

Touched

My heart has been touched. Each time I checked Ashley's journal this is what I found;


"I'm praying."

"Praying"

"We're praying for you and for Ash today."

"Praying today"

...and on and on and on. Your words brought great comfort to our hearts. I don't know if you have ever experienced what it feels like to know that hundreds of people are praying for you exactly when you need it, but I assure you there is nothing can compare to the peace it brings. Thank you for praying for our sweet Ashley today. She does have an infection. At this time we are watching it closely and will start a round of oral antibiotics to try and stop it from spreading. If she is not considerably better in 48 hours then we will begin IV antibiotics and try to stop it from going any further. There is not much that can be done for her discomfort. Tylenol is what we are using, but we are very careful with it because she is a liver patient. I don't see that it helps too much anyway. Her infection began to change shapes today. It now has some streaking that is spreading. We have drawn a mark around the shape of it so that we can measure how much it is changing. She is currently screaming and inconsolable. We haven't slept in the last two nights and it sounds as if she and I will be up again tonight. I promise I can hear her saying "Mom" as she screams. I think Dave heard it last night also, but neither of us said anything to each other. It sounds nothing like the sweet voice she used to use when she would say, "My mama". This one is sad and desperate. I know she wants me to fix it for her, but I can't. The best I can do is hold her, rock her, and tell her over and over again how very much I love her.

I know that Ash has been through much worse than a cellulitus infection in her life, but this is different. She is a little older now and her cry is more deliberate as she tries to tell me how much she hurts. I don't know why this is so tough? Maybe its because I have been so emotional over the past few days? Maybe she has sensed my sadness and it is effecting her as well? Whatever it is, I am ready for it all to pass. Just as her smile can melt my heart, her cry breaks it.

I just wanted to say thanks for praying for her today, and to let you know how much you have touched my heart. I know you are praying for us because I can feel it. Please be patient with me as I try and figure out how to share with you all that is in my heart. I really don't know how to do this anymore. I am frightened of saying the wrong things or of sharing who I am inside. I believe that I will get back to where I can openly share my heart with you as I tell you of Ashley's story each day, but right now I am still struggling. It just feels like I am doing it all wrong. Just know that I continue to pray about what is right and what is wrong and that I promise I'm not giving up. I owe Ash more than that.

Good night my friends and may God bless you. Trish

In Need of Your Prayers

Ash is miserable. She is in a lot of pain. This little infection is causing her a lot of difficulty. She cries and screams constantly until she has exhausted herself and has drifted into a light sleep. There is a grimace across her face and she is bearing down and grunting with each breath. She keeps her little legs tightly withdrawn into her chest and is digging her fingers into her eyes as she tries to cope with the pain. We have scheduled to take her in at 3:45 today. As always we must be very careful when she is down. Her count has started to rebound, but she is still not in a really safe place. We are concerned and are praying for her to get some kind of relief from her discomfort. She has no temperature and her bowel looks good with normal output. I pray this is only cellulitis and nothing else. I would greatly appreciate your prayers for Ash. This is day 3 of a very painful infection. Thank you. Trish

Breaking the Rules

Ash has had another rough day today. It seems she has a cellulitis infection around her G-tube. Her skin is angry red and inflamed and each time she moves she is in a lot of pain. She has spent the better part of the day sleeping. At one point Blake and I were playing catch in the living room (don't tell Trish) and Ash began to just crack up with the belly laughs. I don't know if she found the ball funny, or me, or Blake, or if she just knew she was a part of breaking Mom's house rules but whatever it was she was having a great time and we were so happy to see it. After the ball game I laid down on the couch and the Gherkin laid on my chest and hit me in the head. I am not sure why she likes that so much, she doesn't hit anyone else in the head, just me. It was really nice to get to hold her as I have not gotten to do that much lately. She eventually fell asleep there and if not for the two bottles of water I drank we would still be laying there. Thank you for your prayers for Ash today. I appreciate you more than you know.

I want to thank those who have offered support to Trish following the last few posts. Knowing that so many of you would come to her defense and love her is overwhleming. I would however like to ask that you do not attack each other. This will not give any glory to our Heavenly Father. If you would like to post a comment I ask that you sign it. I will not block anonymous comments because the only way to not allow them is to only allow comments from registered users. If I were to set it up this way about 1/2 of the comments we receive would be blocked. So I have elected to continue to receive anonymous comments. Again, thank you for your support, but let us all please respond with kindness for each other.


Trish and I are choosing to leave this part of our Ashley's story with these words.

Colossians 3

...but now ye also put of all these things; anger, wrath, malice, blasphemy, filthy communication out of your mouth.

Put on therefore as the elect of God, holy and beloved,bowels of mercies, kindness, humbleness of mind, meekness, longsuffering;

Forbearing one another, and forgiving one another, if any man have a quarrel against any; even as Christ forgave you, so also do ye.

And above all these things put on charity...

And let the peace of God rule in your hearts...and be ye thankful.

Let the word of Christ dwell in you richly in all wisdom; teaching and admonishing one another in psalms and hymns and spiritual songs, singing with grace in your hearts to the Lord.

And whatsoever ye do in word or deed, do all in the name of the Lord Jesus, giving thanks to God and the Father by Him.



God Bless you.

Dave

Still here. Just taking some time to evaluate what should be done. Wishing I had the ability to "Blue Skew do" into this picture and perhaps experience the peace that I see when I look at it.

To pretend that words of criticism and judgement don't cause pain would be a lie, but I believe that the author knew that by the words that were written. Some of the accusations were more hurtful than others. The most painful were questions about my faith. My faith is my faith. It is my salvation and no one else's. Not perfect. A work in progress. I had to laugh out loud when I read that I was trying to be a "brave Godly woman". That is the last thing I believe I am. Brave? Not if you actually witnessed my cowardly, crumpled body on the floor outside of Ashley's room the night I really believed she was leaving me. Godly? How I long to be, but KNOW that I have farther to go than most. I'm not one to shove my faith in other's faces. I don't stand on the corner and preach to the masses. I wish I was that brave. I do my best to live out what I believe all the while knowing I make mistakes daily and never taking for granted that God the Father loves me enough to forgive me for them. As for accusing me of writing things that "sound good" or "are you really afraid". I can't understand that one. Afraid for real? YES. If you have spent anytime reading my posts then I am sure you have noticed that I write them spur of the moment and don't even take the time to proof read them or to correct my mistakes. I'm not a journalism major and I'm not a writer. I'm a mom recording the thoughts and experiences that come to me during this journey.

At this point I don't know how to continue writing. I have always referred to God the Father as Father, and I don't know how to leave Him out of Ashley's story. Callouses on my knees? No. My prayer time is difficult to explain. Most nights I lie awake and talk to Him(now I'm scared to say the word Father). I wake up talking to Him while I go about my business. I have found that while I'm in the shower I have uninterrupted time to pray. I pray a lot while I'm driving. None of these times will you find me on my knees earning those callouses.

Am I always kind, sweet, grateful, together? I wish. That is my heart's desire. I sincerely believe everyone deserves to be treated kindly. Regardless of who they are, or what they have done. Showing kindness to others is not an option to me. I expect it of my children because I believe that since God valued people enough to send His only Son to die for us all, then we should place value on those He died for. Grateful? Yes, I am grateful. For more than I could ever list. Too many blessings in our life not to show gratitude.


Yes, my heart is hurt. I have obviously messed up a precious thing if there are those who truly believe I could be as shallow, self righteous, and self absorbed as I have been made aware that some believe. I never wanted this to happen and never realized it could, but now I know and I will thank you for that. No malice, no anger, no venom towards those who think poorly of me. You have that right, but you also have the right not to read Ashley's story. Your welcome to stay, but if you choose not too that's fine as well. Dave and I will only thank you for your time, your prayers, your insights if you believe you were trying to help me, and your love for our Ashley.


Just the Facts. Ash is sick. She has a skin infection around her feeding tube and it is very, very, painful. She spent the entire night screaming as I tried to comfort her. I have no idea what to do. There are the facts. No smiles. No play times. No fun.

If I can figure out a way to write without pouring my thoughts and my heart into this journal then I will, but for now I don't know how to be anyone other than me. I'm still praying.

Thank you again from the deepest part of my heart. Your love, your support, your presence brings comfort to a deep injury inside of my heart. I have never taken any of you for granted. Please know how much you are loved. Trish

Thank you so much to all who have commented and shared their thoughts and prayers with us. It is very helpful to hear from so many of you. To anonymous, we carry no malice or venom towards you, it just is very hurtful when someone points there finger at my wife and tells her how she is doing it wrong. Our life over the last 2 years has been one struggle after another concurrently with one blessing after another and I certainly could not describe the roller coaster of emotions we have experienced. I think my beautiful wife has done an exceptional job with this journal trying to describe all the ups and downs. I grew closer to her even when we were separated so long. When she was away I drew much strength from reading her words on this blog and getting a glimpse into her world away from mine. Trish, you have done a fabulous job and I am proud of you.

Ash has had a rough day with what appears to be a inflammatory response around the tube that is in her tummy. She has been sleeping then wakes up screaming and grabbing at the tube. She did smile and play a little about 7 tonight and that was really nice to see. As I am listening to Blue's Clues tonight as I drift off to sleep I will be praying and asking the Father to please give our little Gherkin a better day tomorrow.

I thank you all for your kind words. I will be praying for you tonight as well.

Goodnight,

DAVE

The original intent of this blog was to keep our family and friends updated on Ashley's physical condition. After a short period of time it became apparent to us that many people we don't know and have never met were captivated by Ashley's Story and many began praying for her and our family. The blog became a great source of strength for our family. Trish spent many months living 700 miles away from her family and she drew strength from your presence. Knowing that God has used the blog to help tell Ashley's Story to so many and that so many of you are praying for our family has indeed touched our hearts and we thank each and every one of you. At this point we do not know what direction the blog will take. We will pray and seek God's will in our life and for this blog. I know no matter what we do there will be some who will think we are making the wrong decision. Please know that we are well aware that the vast majority of you come here because you have come to love a tiny Gherkin just as we have. We have been humbled by your time spent here. I thank you for your prayers for Ash, for Trish and for our family.

Goodnight,

DAVE

Take Care

Thank you for being here. I'm tired and God knows that. I appreciate each of you who have loved our Ashley. I have no interest in writing a book. Never did. Never will. I am who I am. I am saved by grace, married to Dave, mom to Blake, Al, and Ash. Your presence has never been taken for granted only deeply appreciated. Your opinions of me are your opinions and you are entitled to them. I will not try and defend myself, but if my family is attacked then you will see me as I struggle to extend grace while I come to their defense. If it is "venomous" then I apologize again. Never my intent to be hurtful. Thank you again for spending your time on my Ashley. I hesitate to say that I will be praying about the direction of Ashley's journal, please don't worry about her. If anything happens I will let you know. Take care. Trish

Facing my Giants

Since Ash has been down and struggling to stay awake this week I have found myself with a little extra time on my hands. I have used the time to catch up on some reading. I don't spend near as much time doing it as I used to, but this week I picked up a book I received for my birthday last month by my favorite author, Max Lucado. The book is called "Facing Your Giants". When I saw the title of this book for the first time I thought to myself how appropriate. I have a distinct memory of walking outside of my Ashley's room in ICU earlier this year and announcing to my friends(O.K., they were actually the nurses on duty that day, but I liked to think of them as my friends) that I did not sign up to fight giants. What was God doing? Cancer might as well have been named Goliath. Most of them just looked at me as though they didn't understand what in the world I was talking about, but a few of them began to giggle and nod their heads as I explained that I felt like I was David staring into the face of the giant Goliath.

As I read through this book I am finding myself devouring the pages that he writes. Max talks about David. He tells of him as a young boy, fearless in his faith. Facing lions, bears, and giants armed with his amazing faith in God. Then he tells of the time that the prophet came to Jesse's house looking to anoint the next King of Israel and he finds the king in the most unlikely place. Not the eldest son. Not the smartest son. Not the most handsome or talented son. I think Samuel is actually astonished when he looks at young David who has just come in from shepherding the sheep. Dirty, smelly, scrawny, immature. The Father tells the prophet, "This is the one."

"God does not see the same way that people see. People look on the outside of a person, but God looks on the heart." 1 Samuel 16:7 (personally I love this verse. God can see inside of our hearts regardless of what others think they know about us)


I continue reading through the pages and find myself following David as he runs from King Saul. The thing about David is that he didn't always do the right thing. His faith wasn't always strong. Sure the foundation was always there, but as he flees from Saul and fights for his life he begins to look at his circumstance and takes his eyes off of the Father. How guilty I have been of doing the same thing at times in my life! What I love about this book is that I am reminded that David was a man after God's own heart. What? He makes mistakes. He doesn't always do the right thing. He really screws things up at different times in his life. Why? or How? can God consider him a man after His own heart? Because of this: David doesn't allow himself to stay away from God. He repents. He pours his heart out before him. He longs for fellowship to be restored. He doesn't just say, "Oh, well. I messed up. Guess I'm on my own now." He goes to the Father again and again and again and restores his faith and his relationship. How encouraging I am finding this!

I can so relate to David. When I was younger my faith was strong enough to fight lions, and bears, and giants. As I grew older there were periods in my life when I allowed my faith to rest and become weak. I have seen only my "circumstance" looming before me and instead of crying out to the Father I have tried to "fix" it on my own only to make a disaster out of my life. I have lived this way, and even now at times I find myself looking at my "circumstance" and not the Father, but the beautiful thing about our God is that He knows our hearts. He knows that even though I may be struggling to find my faith for the moment my hearts desire is to be close to Him.

My sweet Ashley Kate is a visual reminder to me of what faith can do. Her very life and breath reminds that the God I serve is big enough to sign me up to fight the giants that He allows to come before me. On the days that I struggle and my faith seems to be weak He uses this tiny person to show me what He can and will do if only I will look to Him. I continue to have days of doubt and fear and struggle, but He continues to wait patiently for me to cry out to Him just as David did, " Be merciful, O God. Be merciful to me! For my soul TRUSTS in YOU, and in the shadow of YOUR wings I will make my refuge."

Its been a tough week. Admitting to myself that my faith is feeling weak has been tough. After celebrating her last infusion of chemo, we still have had to watch her go through the side effects of that infusion. Today she is slowly coming out of it. She stayed awake and played for close to 30 minutes this afternoon and then it was back to sleep. She woke again this evening and sat on the bed to play for another 30 minutes or so and now she is back asleep. My giant at this time is fear. Fear while she is so weak. Fear of more tumors hiding in her tiny body. Fear of what is coming next. Is there a Goliath standing on the hill just waiting for me to show up so that he can begin mocking me and my faith? I have no idea. Is there a Saul pursuing my Ashley so that it can attempt to take her life? I pray there is not. My faith is real even when the fear seems to be more real. My God is real and He is near even if I struggle to see Him standing next to me. My prayer is that during my weaknesses He will become strong in me.

Having faith doesn't make us perfect. Feeling weak doesn't make our faith disappear. God is God even when we don't feel strong. Facing giants and admitting to myself that I continue to struggle with them has been a painful but very necessary process for me this week. Thankfully God does know my heart and He does hear me when I cry out to Him. Where would I be if I didn't believe? I would be crumpled beneath the feet of those giants. Instead I am looking to be delivered by the very One who can bring the victory.

Sweet Smiles

At 3:00 this afternoon our sweet Ashley Kate finally woke up. As I was folding laundry I heard a little squeak behind me and when I looked into her crib she was smiling the sweetest smile. Oh, how I missed her smile yesterday. Her daddy came in and was so pleased to see her awake. He scooped her up and they have found themselves a place on the couch to play. She is giggling away as I type. We are so thankful she woke up and seems to have regained a little strength. After watching her sleep for a little more than 40 hours straight you can't help but become a little concerned. As long as she stays fever free then we will just wait for her count to rebound. She should start feeling stronger and more energetic each day now that she is awake. I will be so glad to put all of the chemotherapy and its side effects behind us. By Monday I expect her count to have come up drastically. Then life without chemo really begins. We find ourselves praying several times a day that the tumors are gone and that they won't return. I suppose we will be able to relax a little more once her scans are complete and the films show that there is nothing suspicious left. Because of this reason our Omaha trip can't come to soon for me.

I just wanted to thank you for your prayers and let you all know that our princess was awake. Have a great afternoon and enjoy your weekend. God Bless. Trish

Bare With Me

It has been such a long, quiet day around our little yellow house. Sweet Ashley Kate has been asleep since eleven last night. Her WBC was .4 this morning and she has no energy to stay awake. On days like this I find myself missing her. I continually check her as she sleeps. Looking for the rise and fall of her chest is a habit I developed early on in Ash's life. She seems so tiny to me today. Just frail and weak. I have picked her up to cuddle her a couple of times and realized how little she still is.

While Ash has slept I have been going through and organizing things. I stumbled upon a tote I brought home from Omaha and as I peeked inside of it I was captivated by all that I found. I must have spent 2 hours if not more reading all of the cards and letters that we have received from all of you over the last couple of years. My heart smiled and my eyes poured buckets of tears as I became overwhelmed by the love, prayers, and support that has been given to this tiny baby girl whom I am allowed to love. In the middle of the pile of cards and letters I found this photo and letter that I wanted to share with my Ashley inside of her journal. So this is why I ask you to please bare with me as I spend some time sharing words that I had written to a tiny 2lb12oz bundle of baby girl just days after we had met. I remember taping it to the outside of her incubator so that when she opened her eyes she might see her mommy's arms wrapped around her and so that she would know we how much she was loved.

To my sweet girl,

Little one, you are SO loved by your Mommy and Daddy. We have prayed for this day to come for several , several years. Now that we have met, you should know that you have stolen our hearts. Sweet little Ashley, you are a gift given and created by our Heavenly Father. There are so many things I want to share with you, and I know that we will have many, many long talks in the days to come. For now all you need to know is YOU ARE LOVED. You are loved with a love so unconditional that I struggle for words to explain it to you. YOU ARE BEAUTIFUL. YOU ARE PERFECT. YOU ARE SO WANTED. My heart has ached on the days that we have not been here with you, but now that we are here it bursts with pride and admiration as I hold you. Ashley, you ARE strong, and you have something wonderful to continue fighting for. You have a mommy, a daddy, a big brother, and a big sister who love you. We are here with you and we are right along side of you fighting for you. We are praying for you every day. I KNOW God has big plans for you my sweet girl. Please keep fighting and come home to us very, very soon little girl. Your mommy loves you.


This letter would stay next to her as she slept for the next 6 months. The day I took it down was the day that she came home to us for the very first time. Silly me, I thought that period of time was the struggle and the journey God had laid out for us. I really thought He was finished molding us into the parents He wanted for Ashley and that now we would take her home and raise her. Unlike the Father, I could not see the bigger picture and the larger plan He had in store for her and for us. As I read the beautiful stories and words and encouragements that have been shared with us over the last 22 months I can honestly say that I am thankful He did have more in store. None of it has been easy, but it has been beautiful and it continues to bring glory to Him and beauty to our lives. He is a much bigger God than I could see the day that I wrote these words to my baby girl.

I know I say thank you over and over again to those of you who are still with us, but tonight bare with me and allow me to say it again. THANK YOU for praying. She is here today because He hears your prayers for her and the time you have spent loving her has forever changed our lives. You have blessed us more than you will ever know. Trish

Treasured

Call me a pirate if you wish, but I choose to spend my life searching for and storing up treasures. Once I find them I like to tightly secure them inside the locker of my heart. Sometimes I share my treasures with others and sometimes I keep them under tight lock and key only to be seen by the Father and myself. Over the past year and half since my sweet Ashley Kate has been born I have found myself gathering my "loot" as never before. The treasures I seek are far more valuable than silver or gold, and they sparkle so much more than coins or jewels. Sometimes it seems as though my valuables just fall into my lap, and other times it may take me years of planning or teaching to come across them. Never the less they are each priceless pieces stored inside my heart.

God has richly blessed me. He has blessed me with more than I could ever earn and much more than I deserve to have. The locker of my heart is overflowing at this time in my life. When I looked at this picture of my beautiful treasure Allison I quickly locked the memory of this moment inside. How precious she has become. To see this little girl whose has grown and matured into a young lady right before our eyes is truly a treasure. To have the opportunity to know her, to love her, and to parent her is a gift that has been given by the Father and I wouldn't trade my time with her for anything the world could offer. I am rich!

Tonight I sat in our home and silently gathered an arm full to add to my treasure. Kind words shared between Blake and his sister Allie, compassion shown to our sweet Ashley from Allie as she struggled with her therapy, laughter and giggles coming from all as we played a board game around our dining room table, Allison's silly sense of humor as she announced, "I didn't know we had a dog" (she was referring to her dad's hairy legs that her foot brushed against under the table), squishy cheerios that our Ashley Kate is trying to learn to like, a sweet conversation between the girls as they sat and played in the middle of my bed, "Thanks, mom. No, really THANK YOU!" as Blake discovered his favorite ice cream in the freezer tonight. As I said, my arms were full tonight as I quickly stuffed each valuable piece into my heart.

To watch my Ashley today as she stood completely weight bearing in her stander with a SMILE on her face was a priceless moment. I snapped picture after picture not realizing I didn't have a card in the camera. As we repeated her therapy tonight she wasn't quite as happy. By the second time she had figured out it wasn't really a game, but the proud smiles on Blake and Allie's faces as they watched her stand for the first time was a treasure. They believe in her and their love for this baby is so valuable to us.

The amount of time we are given with our children is unknown. The number of days we have to make memories with them or to make an impact on their hearts is uncertain. Playing on the beach, feeding seagulls, throwing a baseball, sharing a bowl of ice cream, building blocks on her pallet, listening to their dreams spill out of their hearts, playing board games together, tucking them in, singing Jesus loves me for the hundredth time to her, praying with them before they fall asleep, are all treasured moments that I am locking inside of my heart.

Ash is still struggling today. Feeling yucky and not able to keep anything down. I pray that it will all pass by morning and she will begin to rebound from it all. She is almost ready for bed and its my job to cuddle her until she gives up and closes her eyes. So I am off to steal one more piece of treasure before today is over. Thank you for your continued prayers and your words of encouragement. She gets stronger everyday. Good night and God bless you. Trish

In Spite of it all...

...she continues to smile. Ash woke up this morning wearing this smile and she has kept it on the entire day. In spite of feeling yucky from her nausea and vomiting she continues to share the joy the Father built into her spirit. I love this baby!

I really hoped she would avoid the nausea this last round. It usually begins late into Sunday evening or by Monday morning. It never showed up yesterday so I was secretly wishing it wouldn't. First thing this morning it began and has yet to stop. I called her therapist and gave her the option of coming over to play with this happy(yet messy) baby. Ms. Sue declined our invitation for today but re-scheduled for tomorrow. Ash generally goes for about 36 hours before the nausea passes. I think she will be fine by tomorrow afternoon. Our sweet Ashley has no idea what Ms. Sue has in store for her. She is bringing a pediatric stander over so we can strap my sweet Ashley into it and begin showing her what those little legs were made for. Poor Ash is going to think we are torturing her. Thankfully I will be the only one home. If her daddy or Blake or Allie were here they would be quick to rescue her from whatever was making her uncomfortable. Mommy is always the bad guy when it comes to therapy.

Ash will also receive her monthly cytogam infusion tomorrow. Only 3 more to go. I can't believe we are so close to winding up her first year post transplant. We are getting closer to having her central line removed. I won't know what to do without it. Ash has had a central line since she was 11 days old. She will actually be able to take a bath once it is gone. The down side of having it removed is that her weekly labs will have to be sticks and when she is hospitalized she will require an IV, but she will be at less risk for infection once it is gone. There are so many changes coming up for our sweet Ashley Kate and with each one she gets closer and closer to living a more "normal" life. I 'm not sure if we will ever have an Ashley without any bells and whistles, but I don't mind. We are just thankful to have her.

On a side not I will share with you that allowing Ash to play with the remote last night was not such a good idea. Her dad was right. This morning the first thing she grabbed was the remote. I had no idea she was going to begin vomiting first thing or I might have seen it coming. Since I didn't she covered the remote along with its "hundreds" of buttons with her first "offerings". I moved as quickly as I could trying to grab something to clean her up with,but by the time I had a towel ready she had "offered" 5 helpings onto and into the remote. Needless to say it is shot. When I tried to use it this evening the remote caused the TV to go berserk and I have no idea how to fix what we have broken. Babies, remotes, and vomit just don't mix. Lesson learned. Sorry Dave!

All in all it has been a good day. In spite of all the messes we have laughed and played all day long. She is starting to get a little fussy and looks as though she is ready to be rocked to sleep. I love this part of the day as she begins to wind down. What a blessing it is to be her mommy. Thank you for coming to her story today and for praying for our pickle. We are praying that this will be the last week she has to endure the side effects of chemotherapy. Hang on Ash, your almost there. Good night guys and God bless. Trish

Battles

After sleeping all day our sweet Ashley Kate is up and ready for battle. She has stolen the remote from her dad and they are battling over what buttons she is allowed to push and which ones she is not. She is looking for Blues Clues and he has had it with Blue. As I sit and type I can already predict the outcome. He is no match for her. She will prevail because she has him wrapped around her little finger. He tries to be tough, but to no avail. I am giggling because she keeps messing up the T.V. He just got on to her for pushing a button he didn't even know was there. Now the screen is saying all kinds of stuff we have never seen.

I can't believe it is so late. The days are always messed up when she crashes from her chemo treatments. I spend most of them checking everything I can think of. When she sleeps as long and as hard as she has today I find myself in a battle of my own. I struggle and fight against fear and worry. I try not to, but once it starts it is so hard to get it to go away. I know she is weak from the chemo, but at the same time I just want to be sure that while she is down nothing else is going on. She has no appetite today and no energy. The battle over the remote is the most activity we have seen from her all day. She doesn't want to be held. She can't stand to be touched. She just wants to sleep in the middle of our bed and not be messed with. I try and oblige as much as possible, but between meds, pump settings and alarms, dressing changes,diaper changes, and ostomy care it is really impossible to leave her alone. I am so thankful this is her last cycle of chemo. In a few more days it should all be over with and then I am hoping to see more and more good days for her.

We are beginning to make plans for our trip to Omaha next month. Obviously Ashley can't fly commercial so we are hoping to get a med flight approved through her insurance. If not then we will try and get a flight through a volunteer organization called "Angel Flight". The other option is to make the drive out there. In that case Ash and I will probably go alone because Dave won't be able to take that much time away from the office. Once we are there they will do a full body and head cat scan to check for any suspicious looking areas. We will do a series of labs and tests to make sure the cancer cells are gone. The team also just needs to "put their eye on her". They told me there is something to be said for just looking at her. As long as we get the all clear sign then I don't plan on being there for more than just a few days. I am kind of looking forward to visiting. We met so many wonderful people in Omaha and I hope to get the opportunity to see them again. One of the blessings of this journey into transplant has been the people God has brought into our lives. I really believe the Father directed us to Omaha because He had lifelong friendships waiting there for us. I will forever be grateful to those who made our time in Omaha easier and I think of our friends there so often.

Well, the battle on our bed continues to rage and Ashley's daddy has just banished her into her crib. Not only had she stolen his remote, but she began to steal his blankets so that she could play peek a boo. The only problem is that he is tired and is trying to sleep. Silly dad, he has no idea who he is up against. She is way too cute to try and fight. He might as well give up because I am pretty sure we will be listening to Blue as we drift off to sleep. Good night and God bless. Trish

Slapped in the head

Usually that does not sound like such a great thing, but it is if it is my Gherkin and she is trying to tell me how much she loves me. My first two children learned to give hugs and slobbery kisses when they were about Ash's age and I loved those hugs and kisses. Not Ashley, she does everything a little bit different. She has her own way of doing things and showing affection to her dad is done by slapping me in the head. I had a really great weekend enjoying Trish and all 3 of our kids. We had planned on going to a baseball tournament in Houston, but the weather had another idea for us. As disappointed as I was missing out on the tournament, it did give us a rare opportunity to just hang out without all the deadlines and responsibilities that normally accompany my weekends. Ash has looked really good to me the last few days. Perhaps it is because I know she won't have to go back for chemo in 3 weeks. I am feeling very optimistic that she will begin to progress. Now that we are not putting poison into her veins, I think we will start to see what she is capable of and learning. I am positive that she will begin to develop more and more both physically and mentally. God created a great big world out there and I look forward to showing as much of it as I can to her.

Thank you so much for your love and prayers for my little Gherkin. You will never know how much it means to me to be able to rely on you and your prayers for my family. I sincerely thank you.

Goodnight,

DAVE

Resting, Relaxing, Reflecting

Our day consisted of resting(after being up with the pickle all night we slept until NOON!), relaxing on the beach(I love this shot of Ash's toes as she was napping in her stroller), and reflecting on all of the gifts He has given to us. At one point during the day I looked at Dave and said, "I feel so rested!" It has been a long time since I have been able to say those words. This weekend has been exactly what we needed. No schedule, no agenda, no responsibilities, no appointments, no problems. We have taken our time getting to wherever we were headed. We have had no definite plans in mind. We just load the kids and go and where ever we end up is where we are. It has been wonderful.

We enjoyed a late lunch and then spent the afternoon and evening on the beach. Ash and I sat in the sand together and watched the big kids(all 3 of them) play in the water. She was so content to be snuggled in my lap as we listened to the waves roll in. I was so relaxed as she played with my necklace and I played with her toes. She felt especially cuddly today as I held on to her. After cuddling for a while she fell asleep and I laid her in her stroller to finish her nap. As she slept I walked along the beach and collected a bag of sea shells to place in her baby box along with some of the photographs I took of her on the beach. Someday I will enjoy showing them to her and sharing all of my memories of her first trip to the beach. I will have to save the two swimsuits she wore this weekend and place them in the box as well. I don't know why but they seemed to represent something special to me. Maybe the beginning of life without chemotherapy? I'm not sure why I loved seeing her in them so much, but I did.

This next picture was taken shortly after her nap. I just love the way she wakes up. She has this smile that spreads across her face as she opens her eyes to see who ever is there. Lucky for her she opened her eyes and got to see her favorite person in the whole world. It was her dad. These two have a very special relationship. I know Ash loves me, but she REALLY loves her daddy. There is something about him that brings out the happiness from inside of her. I love watching them together. They laugh and play and have so much fun with each other. My heart smiles as I watch him love this baby girl. I ask him all the time, "Do you love her?" just so I can see the look in his eyes as he tells me how much he does. Its the same with all of our children. They all love me, but they have this amazing relationship with their dad. He really is the best father I have ever seen. He is never too busy, too tired, or too distracted by "life" to give them his time and attention. Everything else in life can wait, but they can't. He knows how brief their childhoods will be and he takes those extra steps to make sure they know how much he loves them.

Things in our lives may not always be easy or perfect, but our life is good and it is so very blessed. Its days like today that I look around me and realize that I am exactly where I am supposed to be. Sitting on that beach this evening holding my sweet Ashley Kate and listening to my Blake, Allie, and Dave laugh as they played in the ocean was so good for me. I can't help but reflect on all He has done and is doing in our lives. As I was shooting pictures of the evening sky above the gulf I was reminded of His many promises. In the view of my lens I saw a rainbow that had formed in the distance. I didn't see it until I looked through my camera. It brought a smile to my heart as I whispered "Thank You, I won't forget" to the Father. He is true to His word. He does keep His promises. He really does.


Now that all of these beautiful people are sleeping peacefully(even the little one), I think I will slip off to take a shower. The beach is nice, but its not so nice when it lands between your sheets. My feet are still covered in sand and I won't be able to sleep until I have washed it all away. Thankfully I don't have to hang on to the sand to hang on to the memories we made in it today. We have one more day to play before heading back toward that little yellow house we like to call home. Tomorrow holds more memories we have yet to make and I will close my eyes and wonder just exactly what they may be. Take care my sweet friends and may you feel the Fathers hands as they hold you close to His heart tonight. Trish

A Day At the Beach

Living. That is what she wants to do. That is what we have decided to allow her to do. " A day at the beach" was just what the doctor ordered. How wonderful to slip away and enjoy the water, the waves, the sand, the experience. It was Ash's first trip to the beach and it is one of my all time favorites.

I sat in the warm sand today and smiled a big, goofy smile. I could feel it stretch across my face and just like sand warmed my toes the smile warmed my heart. Can you believe what you are seeing? I had to pinch myself more than once. This is our baby gherkin, our tiny pickle, our sweet Ashley Kate enjoying life. She just sat and watched the waves roll into the shore over and over again. We didn't dare touch her or even talk to her. Apparently she needed to concentrate on watching those waves. I wondered what she was thinking. Did she even know how miraculous the moment was?

Her Daddy took her into the water and let her feel the cool waves wash over her toes. I stood back and listened to her giggle as the water covered her feet. It was such a priceless moment. I could listen to her laugh forever. It brought me such joy to see her experience the ocean for the first time. I remember thinking to myself so many times that she had never even seen the ocean. Would she have the chance? Today God gave her that opportunity and I cried as I watched them down by the waters edge. Next to that great big ocean she is such a small piece of His creation, but He loves her so very much. As vast and as wide and as deep as the water was His love for my daughter is even more. What an amazing realization it was for me.

Dave and I have been to some amazing beaches. We have beautiful memories and photographs from our trips, but I promise you that I have never enjoyed at day at the beach as much as I did today. It didn't matter to me that we have aged this year. It didn't matter to me that we have yet to begin working on our tans. It didn't matter to me that our swimsuits from last season didn't seem to fit. It didn't matter to me that we were on the beaches of Texas and not the Bahamas or Mexico. What mattered to me was that our God cared enough about our baby girl to allow her to be here today to experience the murky waters of Galveston with her mommy, her daddy, her big brother, and her big sister. What mattered to me was that we were a family of five on that beach today enjoying life together.


We built sand castles. We wrote her name in the sand. We watched Allie do cartwheels along the waters edge. We pitched soft toss to Blake and watched him hit baseballs into the gulf. We pushed Ash in her stroller along the shore line. We fed the seagulls. We played. We relaxed. We praised. We enjoyed. We lived.

Tonight they are all tucked in. Everyone is sleeping and dreaming of the fun we will have together tomorrow. Everyone except for our pickle who is still playing. She is exhausted, but cannot sleep because of her prednisone. She sits on the bed and hits her daddy in the head with blocks. I know she is hoping for him to wake up and play all night with her, but I am pretty sure he is not planning to. I am getting ready to go lay down by her. I think I will stay up and play with her just because she wants me to.

We have two more days to play before we head back home. Tomorrow we will go back and do it all over again. I am so grateful to have been given today with her. God has blessed us over and over again and I can't wait to see what tomorrow will hold. Thank you for loving our baby today. Thank you for praying for our baby today. Thank you for continuing to be a part of Ashley's story. I pray you too have the chance to slow down this weekend and just enjoy His blessings. Take care and good night. Trish

She Did It!

This precious baby girl has finished her final round of chemotherapy. 6 cycles. 18 long weeks. Hours and hours of infusions. She did it! Not only did she do it, but she did it with a smile on her face. She was so sweet today I could have taken a bite out of her. Lucky for her I'm on a diet!

Her tremors started about an hour after receiving her first dose of prednisone this morning. She takes a maintenance dose daily of 2.5 ml, but for the first five days of all of her cycles it jumps to 20mls. Basically it makes her want to jump out of her skin. She doesn't sleep, she shakes uncontrollably, and she is wired the entire time. Just in case you hadn't noticed one of the side effects of the prednisone are those CHEEKS. Even though my sweet Ashley Kate can't control the side effects the drug has on her body she does have control of her attitude. She continues to amaze me. God has given her such a spirit of joy. Even in the midst of awful circumstances she smiles, she laughs, she plays. I am so very proud of her!

I wish I could tell you that the tumors were gone, but I don't know that they are. I don't remember if I ever shared with you just how large they were. A total of four tumors were found. 2 in her right lung, and 2 in her left. The smallest was just under one centimeter. The next was approximately 1.5cm, and the two largest were 2cm across. I never realized just how large 2cms could be. When you mark them with a ruler across her x-ray 2 cms becomes very large and invasive inside her tiny lungs. I will never forget the sinking feeling that came across me as I looked at the measurements. How could she do this? How could I do this? The truth. We could not. I knew in my heart at that very moment that she was in His hands. She was living according to His plan for her life, and this too must bring glory to God.

It may have looked like or sounded like I was at peace with all of this, but I can assure I was not. At night in our room I would cry. I would silently scream into my pillow as she slept. I was scared and I was hurt. On several occasions our nurses would come in and find me crying puddles of tears. During those first few days I tried to be strong, but I was not. Ash was the one with strength.

So what do we do now? We wait and we pray. Our oncologist said he would like us to be in Omaha in four weeks to have her scanned. In the meantime we take each day as it comes and we live. We enjoy. We celebrate. Tonight I am happy to say that she has done her part. By early next week (Monday or Tuesday) she will begin vomiting. Her WBC will drop, and then she will sleep. After a week of feeling yucky she will bounce back and begin to move on with her life. After 3 or 4 weeks we will have a plan. Cancer free or round 2(18 more weeks).

Thank you so much for praying for our gherkin today. She is happily playing with her nan and has no intentions of sleeping tonight. Dave and I are going rest so we can be ready to spend a very special day with our children tomorrow. I will share the details with you tomorrow night. All I can say is that if you have never seen a sweet pickle stuffed into a pink swimsuit and wearing sun glasses then you have no idea what you have been missing. Goodnight my friends and may the Father bless you. Trish

A Long Road

In the beginning of our Ashley's journey, Dave and I were so very naive. During the early days of her life while she was in the NICU at Medical City in Dallas we never saw today. We could only see what was immediately before her. I remember the morning she went in to have her reinastomosis surgery. It was so frightening and so exciting at the same time. I was terrified to have her taken away from us and to have her go into surgery, but I was so happy she would no longer have a stoma or an ostomy bag. When she came into the recovery room I was shocked by the size of her incision. She was so very tiny and the staples went all the way across her. She had been opened up from hip to hip and I had never seen anything more heartbreaking than watching her recover from that operation. At that time she was going through some of the worst things my mind could comprehend, but the important thing was that she come out on the other side. With His help she did.

Today as I look back over the road we are traveling I shake my head in disbelief. Those early days were actually some of the easiest she would travel. In those days the word transplant was never even mentioned. I had read about the possibility, but our staff refused to discuss it with us. "Not with Ashley" was the famous phrase. It could happen and it does happen but "not with Ashley". She had so much bowel left. Her ileo cecal valve was still in tact. Her intestine will eventually adapt and she will grow. Dave and I held on to those facts never really believing or considering that she would not. As I said earlier, we were so hopeful and so naive.

Once we finally knew that a multi visceral transplant was our only option we continued walking this long road with our sweet baby not really knowing what was in store. We knew the statistics. We were aware of the infectious complications and the possibilities of rejection, but we continued to be far too naive. The first time I saw her tiny body after coming back from her transplant operation I gasped. I had no idea she would be opened up from the top of her chest to the bottom of her pubic bone. This incision was far worse than the first two she had endured. She was still open, only the inner layers of her cavity had been closed. In some ways the road had made a circle and she once again had a stoma and an ostomy. There were moments when it was more than my mind could comprehend, but she was still with us and He was with her.

Ash would go back to the OR and have that incision opened up two more times in the following week. There were nights when I would sit next to her bed and never close my eyes because I feared that she might slip away from me if I did. The long road was getting longer by the minute and more difficult to travel by the day.

The evening that Ash suffered her cardiac arrest I pleaded to the Father as never before. She had come so far and had looked so good. Was this the way her journey would end? Had she traveled to the end of the road that He had laid before her? I had no understanding. I could find no answers. All I know is that I sat in that chair by her bed and shook for days not wanting to believe what had happened. I knew He was there with us, but what was He doing in her life? For the first time in this journey I allowed myself to wonder if this road was too hard. Had we gone the wrong direction? Through those days He continued to stand by me and He continued to hold my sweet Ashley Kate in the palm of His hand.

A few weeks go by and the road takes a turn. Once again the turn that lie ahead will be one I never saw coming. Not in the early days of her journey and not in the days we were living either. Scans, biopsies, spinal tap, cancer cells. In a million years I would have never believed that our sweet Ashley Kate would undergo chemotherapy. It took me by surprise. Chemo. It is poison. My Ashley would be poisoned for 18 weeks in an attempt to rid her of 4 tumors that had been found in her lungs. He is still with us.

Tonight I pack and prepare to take her to Dallas for her last cycle of chemotherapy. One more round and then we wait. Our road will fork in one of two directions. Over the next three weeks I will be preparing myself to accept whatever direction He has chosen for her. If our road goes one direction then she will be free of the cancer cells and her chemotherapy will come to an end. If our road goes the other then we will begin another 18 week course. No matter the direction He takes us I believe Him when He promises to "never leave us or forsake us". He will continue along the journey and He will walk each step of the road with us. I have to believe that because I am too tired to do this with her alone.

18 weeks ago I was speechless as I watched this poison drip into my sweet baby. The fear of the unknown overwhelmed me and I struggled not to cry as she played with her toys so innocently. Tomorrow as I watch the poison drip into my sweet baby and she plays with her toys I will probably not struggle against my tears but rather let them fall. I will plead on her behalf once again and ask that this might be the last time she ever has to endure the effects of these powerful drugs. I pray that our journey with chemo is ending and that our road is turning in a new direction.

It really is a long road. There has not been one step or one turn that we have taken alone. God has not allowed us to. He has always been there carrying us when the steps became to difficult to take. He has brought you along side of us. Praying. Encouraging. Supporting. Listening. Crying. Celebrating. Praising. What a journey! I hope you are wearing comfortable shoes! Thank you for traveling beside us. I know the bad days are tough, but aren't the good days miraculous? Tomorrow will be a good day. Ash and I will be celebrating the end of chemotherapy and thinking positive thoughts. We won't be home until late tomorrow evening, but I will update as soon as the house is tucked into bed. As always your prayers are appreciated. Goodnight and God Bless. Trish

A Few of My Favorite Things

Her Smile

Her eyes when they sparkle

Her cheeks

Her laugh

Her rolls

Her infectious spirit

Her attitude(even when its ugly)

Her ornery streak

Her amazingly long eyelashes

Her will to live

Her hands(especially when they reach out for one of us)

Her joy

Her growls

Her toes

Her funny sense of humor

Her love for her Daddy

Her relationship with Blake

Her gaze toward Allison as she listens to story after story being read to her

Her ability to teach me to look for and appreciate the good in everyone

Her story

Her Creator


This morning as I watched her sleep my heart began to smile as I tried to find my favorite thing about her. I couldn't. There are just too many of them. How blessed I feel to be her mommy. God has done amazing things in my heart through her life and I will forever be changed because of loving her. Thank you for allowing your hearts to open up and love our little one. Your continued prayers on her behalf continue to bless our hearts daily. Thank you. Trish

Sleepy Baby

Our Sweet Ashley is having one of those sleepy days. She slept all night long, then didn't get up until almost 12:30, then threw a fit during her therapy session, then took an afternoon nap, then played for an hour, and is now having an evening nap. Days like today are the ones that cause concern. Her lab work looked really good yesterday and she shows no signs of not feeling well. She just can't stay awake today and this makes everyone scratch their heads and wonder why? I find myself praying that she might just be preparing herself for her chemotherapy on Thursday. I suppose we will have definite answers in just a few more weeks. At the end of this last chemo cycle we will make the trip to Omaha and scan to see if her cancer cells are gone or if they have spread. I really don't feel as though they are still there, but I remember feeling the same way the night our surgeon poked her head in the door to confirm that her biopsies came back positive for cancerous cells.

Dave and I are struggling trying to decide just what is the right course for Ash. I know when we return to Omaha one of the discussions will center around scheduling Ashley for her take down surgery. We have mixed emotions about this surgery. Generally it is done around the one year post transplant mark. This is where they take the loop of her small bowel that is now on the outside of her abdomen and place it on the inside reconnecting all of the small and large intestine. She will also be placed back on TPN while her bowels recover from the operation and we will slowly begin introducing her feeds at the rate of 5ccs an hour as far as she can tolerate. The largest risk she faces during this operation is of course infection and sepsis. Anytime you operate on the bowel you run a huge risk of infection. We of course want to do what is recommended and safest for Ashley, but at the same time I find myself fearing all that may come with this next step. We will stay in Omaha a minimum of two months as she recovers and longer if she encounters any complication post surgery. Obviously I have strong emotions about returning and having our family separated once again indefinitely.

One thought is that we would like to let Ash have a period of time (6 months or possibly a year) to just be Ash without any major operations or chemotherapy. I would like to see her feel strong and see what she can learn and accomplish during this time. The other thought is wouldn't it be nice to just have it all behind us and then move on from there. Once the operation is done and complete and we move home again then she could take off and begin to feel strong and we wouldn't be facing such a major obstacle in front of us. I really don't know which way things are going to end up happening, I just know that this is a tough decision and I have no idea what we should do. Just a little something we are beginning to pray about.

To be honest with you, emotionally I am not ready to take her back and live through those uncertain days again. I wish I could say that all of those were behind her and that she is just going to be here to grow up and be happy, but I can't. Either way the decisions go we are enjoying each moment we are given with her and it has been such a blessing to be home together.

Thursday is approaching and I find myself asking the Father to help her through it one more time. It seems so unreal to be coming up on her last of 6 cycles. She has done really well and we are so grateful. She has managed to come through so far with nothing more than a little cold. One more treatment on Thursday and then by Monday her vomiting will start. By Thursday her count will go down and then a week later she will start to recover from it all. At the end of the three week cycle we pray she is free of chemotherapy and it will all be over for her. We are so close.

Well, I suppose I should begin dinner. Dave and the kids are counting on having tacos waiting for them as they come in from practice. Wish I could say I was counting on the same thing, but unfortunately it is time for me to try and lose some of the extra pounds I put on while eating out over the last year. Take care and God bless you. Trish

Where We Belong

Allie and I are back home where we belong. We had such a great time this weekend visiting with our family and old friends, but we are happy to be back with Dave, Blake, and Ash. There is just something wonderful about the place you call home. I don't know what it is about home that makes me feel so good and so grateful, but I love it and I am glad to be here.

When I came in last night Ash was playing on our bed and when she saw me she began to clap her tiny hands and then the grin that I love so much spread across her face. I'm serious when I say that she had changed. I couldn't stop staring at her trying to figure it out. Was it her face? I don't think so. Her cheeks? No, their still puffy and rosy. Her eyes? No, they still cross and twinkle. What was it? I think I figured out that it was her hair. It looks different. It is longer and thicker in the two days that I was out of town. One of the hardest things about chemotherapy for me was knowing that all of her hair would fall out. I believe the Father knew that and He allowed her to never quite lost all of her hair. It became very thin and very brittle. You could see her all the way to her scalp and it would break off in chunks, but she never became bald. Anyway, over the weekend it got thicker, it looks darker, and I think its longer on the top. Too cute! I just love this baby girl.

Lots to do around the house today. By tomorrow we hope to have sinks in the bathrooms again. I am so excited we will be able to brush our teeth in the bathrooms. The kids and I are going to weed the flower beds this afternoon. Just like in real life pesky little things like to pop up and try to steal the beauty and enjoyment out of what God has given. I just refuse to allow those pesky things to take from me all that He intends for me to have. Whatever tries to be "weedy" and "pesky" in my life will just have to leave because I am far too blessed to pay attention to them. Ash is looking good, feeling strong, and radiates happiness. Life doesn't get any sweeter than that. I am so thankful for the blessings that surround me.

Thank you for your continued prayers and words of encouragement. There are good days and bad days in Ash's life and I am thankful you are here to share them with her and to pray her through them. You are a blessing to us. May you see the beauty in your life today. God Bless. Trish

"Showered"

Katelyn Grace

My brother's latest gift from our Father in Heaven

We "showered" my beautiful sister in law Rachael and her new baby Katelyn with our gifts, our love, and our prayers. It was a wonderful shower and I am so thankful Allison and I made the trip. My niece is beautiful and healthy and perfect! As I held this tiny baby my eyes were filled with tears and my heart was filled with gratitude as I thanked the Creator for His plan and for His design. I thought about the differences and similarities of my sweet Ashley Kate and this brand new princess I was holding. He made them both so lovely and so sweet, but yet they are so very different. I have to be honest because I refuse to be anything other than that and share with you that there is a sting of hurt that comes to me as I hold perfect, healthy babies. It also comes to me when I see other babies rolling over, walking, talking, and thriving. Its not to say that there is ANY jealousy because I assure you there is not. Its kind of hard to explain. I would not trade one moment of my Ashley's life, her journey, or her story because it is exactly as He has allowed it to be and it is a treasure that I hide in my heart, but if only there was a way that I could spare her the struggle and the hurts that she endures. Early on in my Ashley's life my brother shared with me that I live no differently with my Ashley's unsure future than I do with my Blake or my Allison's. He reminded me that God's word tells us that our lives are like a "vapor". We have no idea how many days they will hold so we must make each one count. This advice and reminder changed the way I wake up each day. I no longer wake up and become overwhelmed with the "what ifs" of my Ashley's situation. I wake up and concentrate on loving and living each minute of Blake, Allison, and Ashley's life. I refuse to allow myself to waste the time He has given me with my children. It is too precious!

So here is a picture of the shower cake made by one of my amazingly, talented sisters. I am really into party planning and details. I described to her over the phone what I had in mind. I had pictured something elegant, something with a scripture on it, and something perfectly pink for princess Katelyn's baby shower. This is the creation she came up with for us. I love it! My sister in law loved it! The guests loved it! I would have to say it was one of the best baby showers we have planned so far. We laughed. We fellowshipped. We celebrated. What a blessing it is to have such an amazing group of ladies in my family. They are my closet friends in the world and I love them dearly. I am looking forward to bringing my Ashley to visit them all just as soon as she is able. Ashley is so loved by these precious women

and they pray for her daily.

This next picture I wanted to share with you is of my sister in law Rachael. I think she is just beautiful! She looks amazing. Can you believe she just gave birth, all natural, to her third child less than a week ago? She looks so good! I am so thankful God brought her and my brother together. They are such an incredible couple who loves the Lord and who serves Him so faithfully. Katelyn is a lucky girl to have these two as her parents. I can't wait to watch them parent this princess after having to boys who are "all boy". It is going to be fun.

This last photo is one of my Allison with her Aunt Rae and two of her cousins Baby Katelyn and Mackenzie. Allie had such a great time this weekend and I am so thankful we came. She really enjoyed seeing all of our family and she skipped around with a smile on her face the whole time. It has been wonderful watching her act so grown up as she got ready for the shower. She did her own hair for the first time and I think she looked really beautiful. All of the girls wore pink in honor of baby Katelyn. My sisters and I laughed as we announced that this would officially be the last baby shower we hosted until one of our girls(we have 6 between us) was married and expecting. We have retired our talents, our table cloths and our notebooks. Since my girls won't be allowed to date until they are 30 I can assure it won't be one of mine and Dave's.

We will be leaving around 2 today to go back to our home and our sweet Ashley Kate. I hope to arrive in time for evening meds. I listened to her laugh and giggle over the phone last night as she entertained her daddy. She is such a funny girl. I can't wait to get home to hold her and to kiss on those puffy cheeks. I have missed her!

Apparently the guys have managed to take good care of her in my absences and she is still in one piece. I'm not even sure if she realizes Al and I are gone. None the less I am anxious to be the one to rock our pickle to sleep tonight. Can't wait to get there. I hope you all enjoy your day and I pray that your life is "showered" in blessings as well. Have a great day. Trish