Ashley's Story

She will leave fingerprints all over your heart

5/03/2007

The "Other" Call

Ash made it through another round of chemo today. I think she did fairly well. She is very jittery and irritable like she usually is afterwards, but has managed to stay awake and smile throughout the day. We are now home and trying to get meds and baths and "tuck-ins" under way.

A little over 7 months ago Dave and I shared with you all that "the" call came. We were busy getting the kids ready for school that morning when the phone rang. I remember trembling as I packed the five of us as quickly as I could. I tried to hold myself together as Dave made the necessary calls to our family, friends, pastor, and the school. I decided to call my sisters and let them know myself. As soon as they answered I fell apart. I mean really fell apart. It took me a while to get the words out. As they tried to calm me down I struggled to tell them that we were on our way to Omaha. As they reassured me that this was the answer to prayer we had been waiting for I finally allowed these words to come out of my mouth, " I am not ready to give her back. This can't be the last day I will hold her." There it was. My fear. Announced out loud and spoken.

This afternoon as I was driving out of the Dallas metroplex back towards home my phone rang. I didn't even bother looking at the number before answering. It didn't take long for me to find out that this was the "other" call I had been waiting for. On the other end of the line was the transplant coordinator from Omaha. "Trish, we think you need to bring her back." That was what she said. "Your kidding, right?" "No, I'm not. We just don't think shes right. She hasn't progressed the way she should have since going home and Dr. ________ would like for you to return so we can assess her and try to see why things are happening the way they are." Once again I found myself struggling for words. She might as well have punched me in the stomach. I was not ready to hear those words. My first thought was this, "I am not ready to take her back." Even now the lump in my throat is so huge that I can barely breathe. My eyes burn with tears and my heart aches with disappointment. We talked for a while and decided to see how Ash does over the weekend before making final decisions, but I can feel it. I know they want her back. They want to see her make more progress.

The thoughts and emotions that came over me on the two hour drive were and still are overwhelming. What am I going to do? I want to stomp and scream and cry and throw something and let the whole world know that THIS IS NOT FAIR. This is what I want to do. Eventually the words I shared last night in my post came back to me. I sat in the car and talked to God about being ready to walk my talk. I said I wanted real faith. I said I was willing to go through the bad days in order to learn and grow my faith. I guess now is as good as time as any. So I am praying and preparing my heart to take my sweet Ashley Kate from her brother and sister again. As I try and wrap my mind around this I know in my heart that this will not be the last time that Ash and I fly away to Omaha without our family. This is a life long process and as much as I want to believe that we will only return for the reunions and our yearly appointments I know that is not the reality of her life.

This call was not the first one I had received from them today. This morning while Ash was being hooked up to her chemo the team called and told me they would like me to take Ashley to see a neurologist today if at all possible. Of course nuero said it was not and I proceeded to try and get an appointment with them as early as possible. The main concern is that my Ashley has slept a minimum of 60 hours over the last 72. When she did wake she only woke to scream and nothing I did could console her until she would drift back into a deep sleep. All of this is occurring with no obvious signs or red flags to alarm us as to what the problem may be. No one knows. I don't expect for nuero to have any answers either,but I will take her because they think it will help.

The bottom line is this: we KNOW that our Ashley is delayed. We accept that she was born in difficult circumstances with no pre natal care and three months early. We are not blind to the facts. We more than anyone on this planet want for Ash to be "normal". We want her to crawl. We want her to walk. We want her to talk and communicate. We want her to grow up and have all the same opportunities that our Blake and Allison have. We love her more than ourselves and we will do everything in our power to afford her all the help that she needs.

I spent a lot of the drive home thinking about quality of life. What is quality of life to me? What in my life makes it of quality? This is what I know. The fact that I can walk does not give me my quality of life. The fact that I can talk does not give me quality of life. The fact that I can run a race, drive a car, climb a mountain, eat an apple, or drink a diet coke is not the quality in my life. This is what is: the joy I feel inside, the love I have in my heart, the relationships I have been given, and my salvation are what makes up my quality of life. If I had to choose between learning to walk or feeling joy I would choose JOY and my Ashley has a spirit of JOY. If I had to choose between driving a car or feeling love for and from my family I would choose LOVE. My Ashley loves us and KNOWS that she is loved. If I had to choose between eating or drinking a diet coke(although this one may prove tough for me) and the relationships with my family I would choose my RELATIONSHIPS and my Ashley recognizes each one of us and has built relationships with us all. If I had to choose between all this world has to offer and my salvation I would choose SALVATION and I believe my God offers that to my sweet Ashley Kate regardless of whether or not she ever progresses to what the world thinks she should be. He loves her and He created her and He died for her just as much as He did for me. This is quality of life.

We will know more next week about the details and the final decisions but what I know tonight is that my heart hurts and my faith is being tested. I pray that I pass the test and that my Ashley will be fine. So sorry to vent for so long. It just came tumbling out and now that I have cried my buckets of tears for the night I will get back to what is really important. Kissing those beautiful foreheads and watching the three of them sleep all in the same house tonight. Thank you God for the time you have given us together. I never want to be ungrateful. Good night and may the Father bless you. Trish

24 Comments:

At 9:38 PM , Anonymous Amy B. said...

Trish,
I am so sorry to hear that Ashley has to go back to Omaha. But we've got to get her to God's best :) I pray for you and your family. That your children, and husband can adjust back into the home as the 3 of them- while you venture back with Ash for the time being. We will be praying for you continuously.

 
At 9:45 PM , Anonymous Amy said...

That was beautifully put. I love the quality of life comparison. You are doing great! God will bless you and your family. God is making you strong even though it doesn't feel like you have much now. You are in my prayers.

 
At 9:56 PM , Anonymous Anonymous said...

I am so sad for you all. I don't want Ashley and you to have to go it alone again. I'm sorry:( On the other hand, I am thankful that she has such great doctors to take care of her. I am thankful that you are there with her every step of the way. I know your heart must be broken to tell your children that you must go back so soon. I will pray and cry along with you clinging tightly to the hope that we have in God's purpose for your lives. On a lighter note....I do have a very talented lovely daughter that perhaps could run into your son in about 10 years :) Love in Jesus, Colleen

 
At 10:03 PM , Blogger Sarah's In the Midst of It said...

Trish, I am so sorry to hear everything, but especially how much your heart hurts. I never imagined the amount of pain I could feel, until I became a mother. I will of course be praying for you five as you wait out the weekend, hoping for improvement.

I just wish I were nearer and could help in some way, and give you a hug. My heart hurts for you tonight. I'm praying for your baby girl--not only does she have quality of life, but her life has improved the quality of many, many others!!

 
At 10:04 PM , Anonymous Anonymous said...

Trish,
I'm sorry that you may be coming back to Omaha, just know that the LORD goes before you and He will light your path! I will continue to lift your entire family up in prayer. Your (all five of you) strength amazes me.
God bless you all!
Still praying in Omaha,
Shannon

 
At 10:16 PM , Anonymous Anonymous said...

Trish I am so sorry. I don't know what else to say except I am praying and that I will pray. Thank you for being so open and honest. You are loved. Sunshine

 
At 11:05 PM , Blogger Mayhem And Miracles said...

Dear Lord,

I just want to thank you for Ashley and for all she has taught us. Please be with her strongly, this weekend especially, and bring to David, Trish, Blake and Allie the peace that passes all understanding. It's Your specialty and they need it. In Jesus Name.

I will continue to pray from much too far away.

 
At 1:18 AM , Blogger Robyn said...

I'm so sorry Trish,and I'll be praying.

 
At 5:19 AM , Anonymous marva mcrae said...

He has a plan! God is good and what faith you have Trish! Still praying in Alabama!

 
At 5:32 AM , Anonymous Anonymous said...

Sweet Baby Sister~ SHOCKED to read your words about the call! It's not time yet, I argue with myself! We have plans and Ash is part of them. How can we do the baby shower from Omaha? etc... Now, that the "flesh" is finished with it's selfish fit, we absolutely KNOW that God's ways are higher than man's. We KNOW His love is PERFECT and complete! We KNOW that ALL things do work together for good to those who are the called according to His purpose, (which you definitely are!) So like you said, here goes that exercise we refer to as FAITH. What a frightening thought as well as the most comforting experience we, as believer's, are allowed to live out! God wants what is best for Ashley even more than we do. I am praying for you as you have to let go of what litttle control you had been given back over the past 2 months. You were blessed to be able to see Blake hit those runners in with your own eyes and not over a telephone play by play! You were blessed to sit and listen to Al share her most trusted 9 year old secrets with you! And Oh how you were blessed to see that man that you are married to perform his silly antics just to see you smile! I know how you heart aches not knowing the future of how long will the trip last in Omaha, and when will you get to see that little yellow house in Texas again. I also know that His peace is the only true and lasting peace that there is, and MANY of us are PRAYING our hearts out that it will be all that you know while you are going through this "next" step with precious Ashley. I love you so much! ~ Kathy

 
At 5:36 AM , Anonymous Anonymous said...

May the Lord bless you all and bind your hearts fast to His own, that you would be granted strength with each new day.

 
At 5:56 AM , Blogger Aunt Boo said...

I am so sorry. I know that going back for anything more than a visit was something that you were hoping would not happen. Ashley is in my thoughts and prayers always, as are you and the rest of your family.

Love,
Amanda

 
At 6:30 AM , Anonymous Anonymous said...

Sorry to hear this Trish, yet, part of me feels the doctors do know what they are doing and they want Ashley to be her best. I will be praying for you all.

It has been so wonderful just knowing you are all together in TX! It will come again and hopefully when Ashley is feeling much better!

 
At 6:46 AM , Blogger Carey said...

PLease know that Ashley and your family is in my prayers today.

 
At 6:49 AM , Anonymous Anonymous said...

Oh Trish, I am lifting your whole family up before the Lord in prayer... Know that you all are held in the everlasting arms, which will never let go.
God Keep.

 
At 7:07 AM , Blogger ManyBlessings said...

Trish,
I am so sorry.
dawnz

 
At 7:27 AM , Blogger Domestic Goddess said...

I am praying for you and your family, this weekend and always. I know this has been a difficult journey, though one filled with little blessings.
Ashley will learn to do the things you long for, just in her own special way. Once this cancer-schmancer stuff and transplant stuff is out of the way it will give her time to start soaking in the world like a sponge. She will do those things! God will provide!
You are a strong, faith-filled woman, even if you do not think you are. I love that you still have a life of Joy and Faith even when tested. You are truly an inspiration.
God Bless

 
At 7:32 AM , Anonymous Anonymous said...

please, don't ever apologize about using us to vent. that's what we are here for... my heart is breaking knowing that what Ashley is up agains--and what your family is up against, as well--

take comfort in the Lord...we are praying for you all...

 
At 9:38 AM , Blogger Wendy said...

I continue to pray for you and your beautiful family. I'm so sorry that Ashley has to go back to Omaha - I can's imagine how you must be feeling. God *does* have a plan for each and every one of us even when we don't understand what that plan is. I will be thinking of you a lot over the next few days.

 
At 9:41 AM , Anonymous Anonymous said...

I cannot say that I know how you feel, but let me say that prayer still works... There are no words that can take away the hurt or the pain you feel right now, but just remember that "The Father" has you and your family in the palm of His hand and he is carying you through this situation. His grace is sufficent, and His mercy endureth forever... Your family is in my family's prayers and you have been added to our church prayer list... May God give you striength and wisdom today and in the days that follow.
Fonda

 
At 10:09 AM , Anonymous Grandma said...

PRAYING, PRAYING, PRAYING!

 
At 11:13 AM , Anonymous Anonymous said...

Oh,honey. I am SOO sorry! That is the LAST thing we wanted to hear. Hold on tight sweet girl. Place your hand in the nail scarred hand. His grace is sufficient. Praying for you and yours, even though the prayers are kind of stuck in my throat right now. We love you and lift you up to the throne of grace, where our God still sits in control of all things and all circumstances.
Judy

 
At 5:08 PM , Anonymous Anonymous said...

Trish,
the way you hold up and handle everything amazes me more and more everyday. I wish I had half the faith. I read everyday sometimes 2 or 3 times. The news is tough but GOD has a plan. Omaha is not what you wanted to Hear. You have done a wonderful job being a mommy, God just knows you CAN do it from 2 different states. I am sure the kids will adjust quicker than you. We know as moms how much they need us but in all reality when we stop to think ...WE NEED THEM MORE. Hang in there, Keep your chin up. Your one of the most amazing people I can think of. There should be one good thing come out of the next Omaha trip.... ..(and I hope some of the readers dont take it as anything but me trying to cheer you up}....TELL Dave you DO EXPECT the bathrooms to be finished and the yard to be perfect when you get home. ha ha

 
At 6:45 PM , Blogger Erna said...

Not a fun call to receive. I hope that you won't have to go back but know that God is in control. You amaze me as you take this journey . . . keep holding onto the Lord.

 

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