Ashley's Story

She will leave fingerprints all over your heart



Over the past 2 years I could probably count the number of times I've been in the church for worship on one hand. It seems so very foreign to me. I was raised in the church. The "every time the doors were open" kind of raising. We NEVER missed a service. That's all I knew.

Dave and I are obviously believers, and as believers we try to raise our children to know the truth of God's word as well. We had been actively involved in children's ministry from very early on in Blake's life. We believed we always would be involved in their classes and activities at the church on some level. Then a little over two years ago Ashley Kate was born and life changed.

I spent the first 6 months of Ash's life in Dallas while she was in NICU. The next 8 months we spent at home, but she was so tiny and fragile that we kept her home. Central lines, mickey buttons, feeding pumps and liver failure don't really fall within the normal Sunday morning nursery workers responsibilities. The next 6 months we lived in the PICU in Omaha. Finally in March of 2007 we moved back home, but still the "bells and whistles" that accompany Ashley Kate are a little much to expect the nursery workers to take care of. On top of all that she was actively undergoing chemotherapy and spent many of those weeks extremely nutrapenic(low blood counts making her very, very weak and susceptible to infection). Church wasn't really an option. After she completed her chemotherapy we actually took her to church and hung out in the balcony a couple of times, and then in September her small intestine went into rejection. We went back to Omaha for the next 3 months. Now that we are home I find myself sitting home with Ash each Sunday morning while Dave and the kids attend church without us. Sure we could go back to the balcony with her, BUT she's 2 now. 2 year olds aren't exactly quiet when they need to be. In fact, our 2 year old is not only noisy, but she is ornery on top of that. If we want her to play quietly on our laps I can ASSURE you this will be the time she is NOT going to. I have tried to run through different scenarios in my mind. I just can't find one that works. The nursery still isn't an option. How many 2 year olds are there that can't walk, talk, or communicate with the workers and other children? How many of them have extremely suppressed immune systems? Exposure to runny noses, coughs and sneezes is a definite "no, no" at this time. On top of those problems how in the world could we ask a nursery worker to care for her ostomy? It's not really that attractive and to those who aren't used to seeing a loop of intestine on the outside of a stomach it can be a little overwhelming. Vomiting? I don't think the other parents would appreciate walking in to pick up or drop off their child and witnessing one of Ash's vomiting episodes. She has them daily and has had for over 4 months. It's not contagious, but it is alarming to see.

I don't believe we will always find ourselves in this place. It just seems that for now this is the place we are. So what do I do about worship? I think I have learned that worship, at least for me, isn't really about the "place" of worship but its more about the "state" of worship. Since I don't attend church at this time I have tried to keep a heart of worship. Seeking to keep my heart in the right "state" so that I might worship each and every day as opposed to only on Sundays. I have learned to pray in a very different way. I find myself talking to God all throughout the day like He was really standing next to me in the kitchen or riding in the passenger seat while I go to carpool. It hasn't been easy. There are times when I feel very distant and wonder how to find my way back. Then there are times when I have felt closer to the Father than ever before. Its very different than I have ever really known. I'm not really "fed" because I'm not sitting under the preaching of His word, but I do think I'm growing. I have no idea if this is right or wrong, but its the best we can do for now so I am just trusting that its going to be o.k.

Sunday's are still a little weird for me. Even after 2+ years of not attending church it seems odd to be sitting at home.

Ash continues to struggle with this silly cold. Other than the coughing, sneezing, overloading of mucus, and headaches she is doing really well. She is learning new things each day and loves to sit and play, play, play. She is happy and full of joy as long her therapists are not around. We spent some time playing in the back yard today and as always she loved being outdoors. Her little mouth couldn't stop grinning. She clapped and clapped for Allie and I as we beat the pants off of Dave and Blake in a little game of 2 on 2(that's the story I 'm sticking to, just don't ask the guys who really won). It was a good day and I find myself ready to lay down and thank the Father for all He allowed us to enjoy on this day of worship. Life is really, really good and we are so blessed.


At 1:52 AM , Blogger The Dean Family said...

The important thing is that you are growing spiritually and believe me, sometimes I am put to shame by the intensity of your relationship with our Lord. You are doing the right thing. Keep on keeping on! Still praying too!(for you all)
Angela in AK

At 6:41 AM , Blogger Cindi said...


Our church puts the sermons online. Does you church are a church around you? You are welcome to listen to ours. Our pastor is an amazing man with a Godly heart and love. He tells it like it us with a twist of Okie.

Hang in there, you are an amazing person. You have witnessed to me on many occaisions.

Cindi in OK

At 8:28 AM , Blogger Laurie said...

I hope you realize in your heart that it was God who brought Ashley into your lives to be cared for by you. I honestly believe with all my heart that your fellowship with Him every day is more important than being in a building on Sunday. It is about the relationship with Him, not the place.
Your ministry with Ashley goes on 24/7 and has been held under many roofs in many different rooms. Your life has been a living out in the open testament to so many people along the way. Jesus is using you and teaching you every day along this journey with this priceless angel. I don't think for one moment that He expects anything more of you than your heart, and I KNOW He has that! I will never stop thanking Him for bring you two girls HOME. I am so blessed to continue praying for and following Ashley's little life and the progress she is making daily. I just love this little girl and I love you and your family. Your family is a living ministry that continues to bring glory to the Lord. May your week be blessed beyond your biggest dreams.

Love, Laurie in Ca.

At 9:27 AM , Blogger Elizabeth said...

I also believe that you do not have to be within those walls of a "church" to worship...I was also raised the same way you are but where we live now unfortunatly there are no churches that believe the way we do so we choose to stay home and worship. I know God hears us when we talk...he answers so many prayers...and for that I am thankful!
May God continue to bless each of you and keep you! This is my prayer for you still!
In Christ,

At 9:30 AM , Blogger Bob&Lee said...


Mobberly has Dr. Stone's messages online to hear. Here's the link to the page. Glad things are going well with you guys!!


At 10:14 AM , Anonymous Jen said...

There are no rules when it comes to spirituality, only that you are sincerely putting effort into it. You definitely do that. If you feel the need for more, maybe your pastor could pop in for a visit with you sometime during the week? or a Bible study group. Some of these things are options. But, really, I wouldn't worry about it. God knows your situation and hears each time you call on Him.
Bless you for being concerned at all. This is far beyond what others who call themselves Christians do.

At 10:25 AM , Blogger Elizabeth S said...

Rom.12:1 says giving of ourselves is our spiritual act of worship. I would dare say that you are probably worshipping in a truer sense than most of us right now. You give of yourself every second of every day. And you do it tirelessly. I have no doubt that God is pleased with your worship. You inspire me.

At 11:08 AM , Blogger Gretchen said...

Elizabeth S. said it better than I could. I think the biggest part of church that your missing is the fellowship with like-minded believers. It sounds like you are surrounded by a fellowship of friends and family, though. Blessings to you as you worship in this season w/o going to the "place of worship". It sounds to me that your place of worship is in your heart. You have no one to answer to but God, and it's clear to me that you've been listening. ((((hugs))))gretchen

At 12:32 PM , Blogger TK said...

John Ortberg, pastor of Menlo Park Presbyerian Church and great author said in one of his books, "God is not interested in your spiritual life, he is interested in your life" which obviously encompassses everything, church, caring for your family, doing laundry etc. Perhaps this season of your life is helping you learn the best way of what true worship looks like.

Keep up all you do, no better way to worship in my opinion than to love the way Jesus loves.

At 1:21 PM , Blogger Bec & Tim said...


Does your church have a room available where you could sit with Ashley Kate and listen to the sermon privately? The church I attended growing up had the service piped into the nursery and a couple other rooms.

As many others said, I don't believe you have to worship within the confined walls of a church. You worship every single day. In your home, your car, etc. You hold a miracle in your hands every single day. Your faith is strong and amazing.

Best of luck,
Becky in MI

At 2:26 PM , Blogger Sun said...

We are praying for you guys still and I think you are precious before our Lord! Sunshine

At 2:28 PM , Blogger Jennifer said...

I would suggest going to a church with an intercom system tat can be heard in a different room....I live in a small town and we have this.

We have our nursery, and next to that is a room with just cribs(that they never use) you would be able to hear the whole service....the kids and your husband would be able to worship etc....

I have a child with down syndrome that can be loud at times, but this doesn't bother me and everyone eats him up no matter how loud he is:)

At 6:54 PM , Blogger hennhouse said...

"isn't really about the "place" of worship but its more about the "state" of worship"

Absolutely and amen.

At 11:12 PM , Anonymous Janiece Baldwin said...

Trish, I can understand that you might feel a little "weird" not attending SS and worship service, after all, as you said, you grew up being very active in worship.
Well, we can all attest to your "state" of worship. After all, there have been so many times that it has been you who have led the worship right here in Ashley's Journal for many, many people to see. Who knows, for some this may have been the closest thing to worship they know. They have witnessed your testimony and your praise to the Father, they have certainly witnessed prayer warriors all around the world and who can deny the miracles Jesus has performed in little Ashley's young life.
As another has said, maybe it would help if you could be fed. We will be starting Beth Moore's latest Bible Study, "Stepping Up" on Sunday afternoons from 4-6 beginning on Feb. 10th at our/your church. With the Introduction class there will be a total of 7
weeks. Maybe Dave could keep Ashley on Sunday afternoons during the study time and give you the opportunity of joining us. The ladies are all different ages, and you would be most welcome. Your mom has attended one of our studies.
Much love and prayers~~~Janiece

At 11:51 AM , Blogger Amy T said...

Trish, God knows your heart and that is what is important. Maybe the bible study that Janiece suggested, or another similar one would meet your need of fellowship and growing in the word. We started the same study at our church on Mondays at 10 yesterday. It looks like it will be another great one. We would love to have you join us. (of course with Dave's schedule, Sunday may work better, but know you are welcome). Email me if you want more info.

At 2:44 PM , Blogger Shari said...

Trish--I agree with you here. Once I was dx w/ cancer and started chemo I couldn't be in crowds and around a lot of people. I taught myself to have my own little "church service" all by myself at home. Growth is the important thing and He used this time to mould me. I am forever thankful!



At 4:56 PM , Anonymous Anonymous said...

Glad things are still going so well.


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