Ashley's Story

She will leave fingerprints all over your heart


Not mine, but His

I must constantly remind myself that Blake, Allison, and Ashley are not mine. They do not belong to me, and they were not created to bring me joy. I am just the one who is blessed to have the opportunity to show them Who He is. They belong to Him. They were created to do His will and to be used in His plan, and to bring joy to the Father's heart.

This morning I am once again trying to find a balance. A balance between how very much I respect those who God has equipped to treat my Ashley's illness and the side that as her parent I feel I am being led to do something different for her. There is a very fine line. I would never want any of our "team" to feel as though I did not trust their decisions or respect their opinions because I do. When I approach them during rounds with our questions, our research, our opinions on what is being done with Ash I pray that I never offend them. I want to work with them, and I believe it takes both the team and David and I to make the best decisions for her. This morning Dave called to give me a list of things he would like for me to address during rounds. He told me had been praying over them for a week and that he believed this is the direction he would like to go. When I receive calls like this I begin to panic. I am the one on this end who must find that balance before I open my mouth. Praying the entire time that our wishes will be received the right way and not alienate any member of our team. So I took the plunge and voiced our concerns, our goals, our thoughts once again. I feel as though if we were keeping score that I won one and lost another. They listen, they discuss, they decide. I will not go into the details of what our wishes are for her care, but I will ask for your prayers as we seek different options that will hopefully bring our Ashley closer to home.

There is one main difference I see between parents and the medical staff. They have the medical knowledge that God has allowed them to obtain, but they do not have the understanding or experience of raising a chronically ill child. We approach the situation from two different perspectives and somehow we must meet in the middle and hopefully obtain the same goals for her. While doing this we must learn to respect each other and what we each bring to the table.

The role that I find myself in when parenting my Ashley is very different than any role I have ever been in before. I am not only her mommy, but an advocate for her. I must learn, study, research, pray, and make decisions that I have never been faced with before. My prayer is that God would continue to lead us in making the right decisions for Ashley.

As her mommy and daddy we are trying to do the best we possibly can for Ash. The whole time realizing that we have been given the job of raising her to bring glory to Him. As our children grow our hope for them is that they will not be afraid to dream big dreams, to reach for lofty goals, to stand for what is right, to change this world, to serve the Lord. As I think of the places around the world and the number of people who Ashley has touched I am humbled as I realize that even our tiny Ashley has already begun to fulfill her purpose. She has traveled to lands that I will never go. She has met people who I will never meet. She has impacted the world in ways I may never see. She is not mine. She is His.

P.S. We have had 2 wet diapers since this mornings post! Yeah!


At 12:27 PM , Blogger bethcordell said...

thanks for the great reminder that our little ones are His!! we are praising Him for wet diapers and praying for Him to guide the drs and yall! He will. He loves that sweet baby so much!!

At 12:31 PM , Blogger Staci Barham said...

Praying for you,Dave and the Medical staff as you all work together to bring you and Ashley back home very soon. Praise Him for the 2 wet diapers!!! Staci

At 1:06 PM , Anonymous amy borden said...

I'm so glad for those diapers!

You're right Trish, that is such a fine line. When we were in Savannah with Morgan and they could do nothing more there, we delt with this situation. We prayed, as you have, and God sent us a nurse one morning we had never seen on the floor. I was so frustrated that someone who didn't know Morgan would have her that day. Little did I know that this would be the nurse that quietly urged us to check out TCH in Houston. That day I was in the consult room with her doctor and I simply asked,"if she was your child..." I thank God often for his humble answer, "Let's move her."

Your situation in very unique, and I don't think for a moment that I could fully compare the two... but I pray that your doctors will see that your decisions are based on your love for Ashley, not your concern for their competance. I will be praying for you and for them today. Much love from Longview!

At 1:29 PM , Blogger Karen said...

Trish, I will be praying for His wisdom to be revealed to you, to Dave and to the doctors, and that in one accord you all can make the decisions that are best for Ashley. You are a remarkable woman for all you are dealing with. Bless you.

At 1:32 PM , Anonymous Anonymous said...

Although I do not have a chronically ill child, I've had to be an advocate for a child who was constantly ill with ear and tonsil infections. It's such a hard line to be an advocate and still be open to the doctors wisdom.
I'm so glad that your husband does that research and you can be a strong advocate. You are Ashley's parents and somethings only a mom and dad can know.
I'll be praying for "all of you" to have godly wisdom and discernment on treatment options.
Just know God has plans to prosper Ashley not to harm her.

I might be stopping by later this week with a treat basket just for you.
Blessings on your Monday.

Jill from Omaha.

At 1:39 PM , Anonymous Anonymous said...

I received your blog through an email asking for prayer for your sweet baby a couple of weeks ago. I have been anxiously praying and following her progress since then. I know to some degree what you are going through as we also had to deal with a serious illness with our son just two years ago. He was diagnosed with Type 1 Diabetes and within 24 hours of being admitted to the hospital, he suffered a massive stroke which left him in a coma for 6 weeks and caused him to have to learn to do everything all over again. Your post this time reminds me of our days in the hospital... having to make decision about your daughter's care, wondering if you are making the right one or not, especially when it is different than what they are suggesting. I will share with you that God does sometimes lead us as parents in ways that are different than the medical teams because He is leading us to do His will. I have prayed strongly for the feeding tube issue for Ashley as it is one that we also struggled through with our Jonathan. They told us it was the only way he would progress at the time. I had an uneasy feeling about it from the beginning but could not really give any reason why we shouldn't go through with it other than it just did not seem right. We spent the entire day in the radiology dept. the day of the surgery, agonizing over the decision to put the tube in and by the grace of God, He used one of the doctors to tell us not to do it. We stopped the process and within two weeks Jonathan was eating and drinking again on his own. I know now that the Lord gave me those feelings for a reason, but I had to follow His leading in order to do His will for Jonathan. There were other times that God allow what seemed to be a bad thing to happen in order to protect Jonathan from something I could not see that would have also been bad for him. I learned not to fear the "bad" things as much but to know that God was always in control... much better control than I could ever be. There were still other times when He made the changes without our help knowing that we were mentally and emotionally unable to handle the situation. We learned to live moment by moment as you are also learning to live. I will pray that the Lord will guide you both in the decisions that need to be made for your daughter...that you will know His good, acceptable and perfect will in each situation and that you will have the boldness to stand firm in your decisions especially when they are opposite of the medical suggestions that are being given. Don't ever ignore the thoughts and feelings you have about what is going on. God has placed them there for a reason, just as He has given you the responsibility of caring for this child and He will guide you exactly how He wants to you do it. I am also praying that God will soon repay you a hundred fold for the days that you have been away from your family. He continues to faithfully repay me and my family for that time apart and I know that He will not fail you either.
Praying in faith - Believing,
Kristi Cooper
Rom. 4:17-25

At 2:09 PM , Anonymous Grandma said...

Praying with you and Dave as you respond to the promptings of the Holy Spirit. He will lead and guide you in the right direction. Praying for wisdom and understanding of the medical team, also. Continually praying. Love you, Grandma

At 3:29 PM , Blogger jtcosby said...

That was a great, thought provoking post...I've never looked at things in the way you mentioned. My SMALL dealings with a NICU (one week) don't leave much in the way of knowledge...thanks! Oh, by the way, you are torturing me by waiting until the end to tell about Ashley's diaper, you are too funnY! :) I'm so happy to hear of her diaper being wet...what a funny thought...I'm excited about a wet diaper...ha!

At 4:11 PM , Blogger Connie Barris said...

"And who knows but that you have come to royal position for such a time as this?" Ester 4:14

I don't know if you realize what or how much you minister to everyone.
Going through a crisis right now but nothing, absolutely nothing compared to you... You so hold me up. Your faith, if I could just have an ounce at this moment. I thought I did but well, I guess sometimes we just need each other.
It is sometimes easier praying for someone else... You are beyond awesome...your whole family.
Ester is one of my favorite scriptures.. and you are definitely here for "such a time as this"
God bless you.... I pray for strength, for wet diapers, for your family and continued blessings. I feel like you all are part of my family now.

At 4:33 PM , Anonymous Anonymous said...

Praying for God to give the right knowledge to the medical staff to properly handle each stage in Ashley's progress. Thanking him for those wet diapers. That is a blessing!!! Praying for the family to always feel the almighty God's hand in every decision they face. Love and prayers, Matt and Cindy Adams


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