Ashley's Story

She will leave fingerprints all over your heart

9/22/2007

Lost

I need to write. I need to unload what it is inside that is killing me. I am afraid to put it out there for fear of being judged, but again if I am not honest in this journal then I don't want to have it any longer. I have a physical pain inside of my chest. Sharp and heavy across me and I really think it is coming from all that is bottled up inside of me. So if you disagree or if you are offended or disappointed in me I beg you not to let me know at this time. I really couldn't take it right now.

In my mind and in my heart I am struggling with guilt. I feel guilty for the thoughts and the feelings that I am having. I feel guilty for not bringing her here sooner. I feel guilty for not knowing how to help my Ashley Kate. I asked our surgeon what did we do wrong? What did I not do that I should have done to protect her? What can I do differently with Ash?

I feel disappointed. I feel naive. I feel betrayed. I feel lost. And I ask myself, "What right do I have to feel any of these things?" Which in turn adds more guilt.

God gave us Ashley. He gave her life. He gave her new organs. He gave her five good months at home. He gave and He gave and He gave because He is good, and I truly believe He is not done giving. I know this so why does it hurt so much?

In the back of my mind I knew how fragile she was and will always be. I knew we could lose all that she had gained in a matter of hours or days. I knew these things, but life was so good that I think I tried to forget the reality of transplant. It is tough. It will never be easy. It will always be difficult, but I didn't really believe we would have to return and battle for life and survival and stability again. Why did I allow myself to become that naive?

Ashley's bowel is not working. They call it an ilius. It is not moving. It is not functioning. It is sitting still and allowing the fluid inside of it to sit still. Thankfully it is not blocked at this moment and there are no strictures. We do not fail to be grateful for this news. All of her ostomy output has come to a halt and it is backing up in her intestine and coming out of her mickey button. We have attached a drainage bag to the button(the mickey is the button in her stomach that her feeding tube attaches to) and so far today she has put out about 800cc of bile. On the other hand her ostomy has put out 8ccs. Her vomiting has ceased although she is still nauseated. Her kidneys have come alive in the last 5 hours. She had only 3ccs or urine in the previous 12 hours, but in the last 5 she has had over 300. We are so thankful for this change. I see God's hand protecting her kidneys. We were very concerned and frightened as was our team of nurses and doctors. I am debating on whether or not to post some pictures of her current appearance. I would like to show you what has happened to her hands as her skin sluffs off, but I am concerned about frightening Blake and Allie just in case they were to walk by a computer and see them. I'm still thinking about this one. The kerotin layer of her skin has been affected by whatever is taking over her body causing her to lose it. If you peel tape or a dressing off of Ash right now that layer of skin comes off too leaving a raw, almost burned appearance to her body. Her right hand is now wrapped in gauze like a burned victim to protect the raw fingers from becoming infected. She is also losing her hair most likely because of the weakness of this kerotin. Again I feel guilty and I am ashamed because I have shed many tears over her hair and her appearance. Ashley's tiny features and beautiful petite face had just returned after being lost for almost a year and now they are disappearing again. I can't believe I am crying over the loss of her ponytail.

"She will get much sicker before she gets better". That statement sent fear and pain throughout my entire body. I now realize that Ash and I will be staying and not returning home until this mystery is solved and she is restored to relative good health. Again, I cried.

In the midst of all the hurt and guilt I still see the majesty and wisdom of my Father. I still believe He has work to do in my heart and in the life of my baby, but it doesn't keep me from feeling lost and broken tonight. I am still thankful for this life, this tiny person that I am allowed to love. I am still thankful for the friendships and support He has provided to us over the last two years. I am still thankful for her life, her breath, her spirit, her organs, and her beauty even if she loses parts of her hair or her skin. I am still thankful for each one of you. Your prayers are my most treasured comfort. Thank you. Your words to the Father are much more appropriate than my repeated phrase of please, please, please.

I am trying to get a handle on all that wells up inside of me. I am trying and tonight that is the best I can do. Please forgive me for being so weak. My spirit is weak, but my faith remains strong. I still believe in the midst of my confusion and struggle. Goodnight. Trish

47 Comments:

At 9:49 PM , Blogger Amy T said...

I can't imagine the pain you are going through. We are in the gap praying for you and praying for Ashley. Praying tomorrow will bring a turnaround and praising God for the good news that is there amongst the not so good. We love you guys and are continuing to lift you up to our Lord in prayer.

 
At 9:57 PM , Blogger Sun said...

I am sorry if this posts again - I lost my first comment -

You are so precious before God - your heart - your love - please let us hold you up in prayer. I will not cease to pray for you guys - I will not cease to ask my family and friends to pray for you - let us lay face down in the gap and lift you all up.

I also wanted to let you know that if you need ANYTHING - please let me know...God will not fail you - He will not fail Ashley - He will not fail Blake, Allison, and Dave...He is Sovereign - I know that you know these things - but I also know when you are hurting it helps to hear them again and again! Trish, you and Dave are such great parents - you are such precious people.

Thank you for the updates on little Ashley! We are continually praying for her and checking the blog for updates. Sunshine

 
At 9:58 PM , Anonymous loretta said...

Ashley...I just found your journal. I will be praying for your beautiful baby. I went back and read your posts from last sept. What a wonderfull and strong mother you are!! I doubt i could do what you have done. I know God has you both in his hand, and will see you through whatever happens. God bless your whole family.

 
At 10:02 PM , Blogger Karen said...

Oh, Trish, none of us can even imagine all you must be going through. Don't be ashamed for anything you are feeling--you are only human. God can handle your emotions and feelings, so just let them out. I'm continuing to pray for you all--Karen

 
At 10:02 PM , Blogger Tammi said...

Oh Trish,
I am so sorry for you and Ash and the whole family. Prayers are being sent heavenward.

Please don't apologize for feeling the way you do. Feelings are feelings. You're allowed to have them! God understands! Trust Him, trust Him, trust Him!!!! He can take all of your fear, anger, and frustration.

Give your little one a gentle feathery kiss from all of us who are praying for her and tell her that we love her.

 
At 10:02 PM , Blogger Shane and Candice said...

Hello this is SHane and Candice Rigdon. We were so sad to hear that Ahsley is back in the hospital, especially after she was able to be home with her loving family for a few months. I read of the pain your are feeling and the thoughts running in your head and I know that I feel may of those things too, how could you not hurt watching your little angel go through this again. As you struggle right now what a strong family you are with hearts of gold - no matter if you are feeling lost right now. The Lord is with you and we may never understand his plans, but the important thing is to know he has one and keep your faith. The best thing you can do by the little angels side is pray. I wish we could be there to offer a helping hand, but being in Alaska does not make that possible. We will continue to keep you in our daily prayers. I hope the Lord will ease your pain and I am glad you are holding on to the good that has happened that is very important.

 
At 10:06 PM , Anonymous Dee Dee in NC said...

You have taken wonderful care of Ashley. Please don't beat yourself up. She is blessed to be in your family, as you are blessed to have her.
I wasn't offended by anything you said. I could relate to the way we want to redo things and aren't sure about the decisions we've made, but you have been exemplary parents and caregivers.
However, this I know : You are exhausted. You are probably scared to close your eyes in rest for long, which is understandable, but the lack of rest combined with all the concerns you are bearing is bound to affect your frame of mind and your sense of mental balance and your ability to navigate a stressful situation.
Please try to rest when you can.
Praying.

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

We are praying here tonight Trish for Ash, You, Dave, Allie, Blake, all the doctors, nurses and those caring for your oldest two. You are so strong and I am amazed at your ability to share your heart so freely! We love you guys and know that it will all work for HIS glory! (((Hugs))) ~Chan~

 
At 10:20 PM , Blogger ManyBlessings said...

The burden you are carrying is incredible. Please don't apologize or think you "should feel" one way or another. No one can fault you for being human. It's precisely when we admit we "can't" that God steps in and does His most amazing work. Remember, as much as Ashley is His child, so are you. And as much as He loves Ashley, that's how much He also loves you. Imperfections and all.

Praying for you over here,
d

 
At 10:26 PM , Blogger Kirsten said...

We pray for Ashley in Illinois, one thing that caught my eye was the peeling skin, has Kawasaki disease been ruled out? Again we pray for your little one and for your whole family.

 
At 10:26 PM , Anonymous Anonymous said...

Only a mother who cares more for her children than herself is plagued by doubts. Even though I do not know you I know you have and will no doubt continue to do all you possibly can for Ashley and the rest of your family. We can all see that is the kind of person you are Trish, the kind of people both you and Dave are. I was so encouraged to hear Ashley's kidneys are working again. Like everyone reading your blog in the last days I have prayed for Ashley and your family throught the day and will continue to pray that God will comfort and protect her and make her well again; that He will comfort and protect all of you.
Susan O

 
At 10:33 PM , Anonymous Nikki said...

Trish,

Strength is of the Lord. If you were strong continuously, what need would there be for His salvation? What miracles would show forth of His mercy? The enemy authors guilt. Your testimony is strong. You are tired. And much more sober in your reactions than I can comprehend with all you all are going through having to watch your baby suffer. THAT IS a testimony for Christ. And what you're calling naive may have been trusting HOPE. Maybe you believed everything would stay smooth because you knew God could do it. You have been so careful. You said it best yourself earlier. You KNOW Ashley. You know her needs. And YOU HAVE BEEN WILLING TO PROVIDE THEM WHEN OTHER PEOPLE WOULD HAVE SAID "SHE'S TOO HARD" AND WALKED AWAY. People who would judge you in this situation should spend just 24 hours living in it. That would change every mind. We will continue to pray for Ashley and for you and David. It's all we can do. It seems so easy compared to your part. I hope God will draw VERY VERY near to you tonight so that you can FEEL Him with you. Just please remember in your fatigue that He is not looking for perfection. He sees you like you see Ashley, broken, but indescribably precious.

 
At 10:35 PM , Anonymous Lori said...

You are such an inspiration to all of us! There is no reason for you to apologize for your feelings. He will carry you through this!

Please know that we are praying for all of you. You all have been in our thoughts all day!

In Him,
Lori and family

 
At 10:38 PM , Blogger Paulette said...

Trish,
May I say that I could not wait to get home after being gone all afternoon so that I could check on Ashley and you. Trish please let yourself feel all that is welling up.
You have absolutely NO reason to feel guilty. You are the most attentive mother I know. You are not responsible for her getting sick. Just because you recieved normalcy for a while should not make you feel guilt.
I am going to stay up late to pray for healing for Ashley and your pain Trish, I pray that God would just wrap you in his arms and let you rest in Him. You are amazing Trish and you and Dave are awesome Parents who truely deserve Ashley Blake and Ally.
You are not alone.... we are here.

 
At 10:39 PM , Blogger Fiffer said...

Oh my goodness. I haven't checked in for a week or so and had no idea. I will be prayer very much for peace and comfort for all of you, especially your sweet baby. Please keep us updated. I want you to know I know of no better parents than the two of you. The love you have for your children inspires me...God bless all of you with his love & a peace that passes understanding.

Love, Martha

 
At 10:42 PM , Anonymous Granny said...

Trish, I do so hurt for you and David, as I read your message and feel your pain....as you helplessly watch your dear Little One's weakness and suffering....and your further burden of having to be away from Blake and Allie. This I say with absolute certainty, `God knew what He was doing when He chose you two for the parents of this beautiful little Ashley Kate girl.'
God is Love; trust Him
....Granny

 
At 10:42 PM , Anonymous Granny said...

Trish, I do so hurt for you and David, as I read your message and feel your pain....as you helplessly watch your dear Little One's weakness and suffering....and your further burden of having to be away from Blake and Allie. This I say with absolute certainty, `God knew what He was doing when He chose you two for the parents of this beautiful little Ashley Kate girl.'
God is Love; trust Him
....Granny

 
At 10:44 PM , Anonymous Kristi Cooper said...

Each time I think of sweet Ashley Kate I pray for her and for your family. When my son was very sick 2 years ago, someone gave us this Scripture. We posted it in his hospital room and read it many times to remind us of the hope we have in our awesome, powerful, healing God. I think of it when I read what you are going through. Habakkuk 2:3 - “For the vision is yet for the appointed time; It hastens toward the goal and it will not fail. Though it tarries, wait for it; For it will certainly come, it will not delay. Just recently a friend of my shared a Scripture with me that she prayed for my son and has his name written in her Bible beside it. I hope it will encourage you as well. Lamentations 3:31-32 - For the Lord will not reject forever,
For if He causes grief, Then He will have compassion According to His abundant lovingkindness.
Know that I continue to pray for your precious baby and I anxiously await to see the miraculous wonders God has in store for her and your entire family.
Praying in Faith and Believing,
Kristi Cooper

 
At 10:50 PM , Anonymous Anonymous said...

There's nothing remotely weak about all that you are feeling. Anyone in your shoes would surely be exactly where you are.

You've done a fabulous job, and it's an almost impossible task - knowing how to balance exposing them to the fullest life they can possibly have, yet only exposing to that which they can handle, especially when the "enemy" is an unseen, microscopic germ. There's no perfect and right answer, and seeing how healthy she looked in recent pictures, it would seem you were "feeding" her with the very sort of life experiences that were allowing her to make strides she'd not have otherwise made.

Regardless of anything you may have done or not done, God has always been and will always continue to be in control. You seem far too conscientious, and she's far too "prayed for" for you have been responsible for what's happened to her in any way. For us, a complication would've meant a 1 1/2 hour drive to Omaha, and even that would've left me asking, "Do we go all the way there?" I can't imagine being three states away and having to make that call.

It's absolutely normal for you to be second-guessing yourself... but please know that nobody reading your story could ever judge you as being anything but having her very best interests at heart.

Thank you so much for updating in the midst of all that is going on there. It's good to know what to pray for!

Brenda in N E

 
At 10:54 PM , Anonymous Anonymous said...

Trish,
I call what you are feeling "mommy guilt." Sometimes we feel guilty if they bump into the wall, because we didn't pad it (or enough)! Or because we weren't there when they skinned their knee. We so want to protect them. But you have no reason for guilt. You have done a great job of being mom to all 3 of your children.

I believe God knows and understands your every decision. I know you trust Him, and He knows you have your little pickle's best interest and your prayers in every decision you make.

Please crawl onto your Father God's lap, rest your head on His shoulder and try to get some rest for yourself. God will be keeping watch over your dear little pickle.

I know your whole family is being blanketed in prayer. Please "feel" that blanket and rest in His arms and His care. We'll keep praying!
-Mary

 
At 10:55 PM , Anonymous Denise said...

Praying so hard for Ashley to fight off whatever this is! Also praying for you and Dave to have the strength to get through these trying and emotionally exhausting days! You two are the best and most wonderful parents this little girl could ever have!! You care for her and meet all her needs, love her no matter what, and most importantly you pray for her! She and you are both blessed! God is holding you in his hands and loving all five of you! There are many prayer warriors out here praying for you, ALWAYS remember that!

 
At 10:58 PM , Blogger emily said...

You are not weak, you are human. God does not expect you to carry this burden on your own - if we could do that, then we'd have no need for faith. You are going through an unimaginably difficult time right now and it is OK to be sad and angry and upset and frustrated and heartbroken. Even Jesus wept. It is not a sign of weakness or imperfection, it's a sign that you are a parent who loves their child so deeply that they ache for her. Your Heavenly Father understands that above all.

 
At 11:02 PM , Anonymous Julie said...

God sees nothing but love and delight when he looks upon you. You are His precious one, and I believe He hurts with all of you tonight. You are an amazing woman because you have the strength of the Lord. I'm praying constantly and with hope that the next news you get will be encouraging for you and releiving for Ashley. May God give those doctors extra-ordinary wisdom and insight into what going on here. It's hard to imagine that He loves Ashley even more than you. I'm a mother, and I really can't imagine how much love that is. Anyway, were with you, and you ARE NOT judged. You are blessed and admired. I think in Romans??? (I know Paul said it) it says that we shouldn't even judge ourselves. Your are His Beloved. For fear of sounding trite, I'll stop now.

 
At 11:08 PM , Blogger jtcosby said...

Trish,
We love you so much. You are so special to my family. I am actually able to tell Jesse what is going on with Ashley and he knows who I am talking about. Trish, you are allowed to have these feelings. It doesn't make you anything but human and precious! Ashley is amazing...and so is the rest of your family. I am praying hard for you tonight...praying Ashley shows REAL progress throughout the night. I am praying for you to feel peace, as much as possible. We love you my friend.

Love,
Tamara

 
At 11:21 PM , Blogger Tara said...

Crying for you and Ashley and for the whole family tonight. I feel so sad for Ashley, we may not understand, but never forget God knows and He loves her more than we humanly can. Trish, I am praying for you - don't beat yourself up, just remember we are not in control.

 
At 11:53 PM , Anonymous Anonymous said...

Oh Trish-I am crying tears with you tonight. The pain and ache that goes with a sick little one can feel unbearable. Please do not feel guilty for feeling or thinking those things. I believe we would all do that in a time like this. I think it would be normal for you to want her to be normal and not be sick again after such a rough year. Please do not feel guilty for that. You are so precious and you are such a good Mommy. And I thank you for sharing your weakness tonight. It's honest and that's what it needs to be. Know I am storming the gates of Heaven for you and your precious baby girl! I love you, Trish! Thank you for updating!
Shari

 
At 12:20 AM , Anonymous Natalie said...

Trish- I am praying hard for sweet Ashley Kate. God has given and I believe he will keep giving. Ashley is a testimony to faith and perserverance. She is truly a GIFT from God. He is in the details. I pray for Allie and Blake to have comfort (and Dave) and peace knowing that Ashley is in good hands. Who could ask for a better brother and sister? I pray you find comfort in knowing that God is with you and with doctors. He is working though them.

 
At 12:44 AM , Anonymous toni in the midst said...

What I see is a mother's heart, completely transparent and hurting deeply. And it is so filled to capacity with love that I know it might burst at any moment. No apology needed for ANY of that.
I learned of Ashley through Mayhem and Miracles. It is my privilege to pray for her and for her family.
Gentle hugs to her tonight (and a few cyber hugs for you too, Trish)!
~Toni~

 
At 12:44 AM , Anonymous Anonymous said...

Little Ashley belongs to God The Creator of the Universe. She is an angel that is being used to teach us here on earth how to live and love. We are all learning more about life through Ashley, our divine infant teacher. I am asking for divine intervention that you and your beloved will have absolute peace and understanding at this time and that Little Ashley will be able to endure.

 
At 2:51 AM , Anonymous Anonymous said...

PRAYING, PRAYING, PRAYING!!

 
At 2:52 AM , Anonymous Anonymous said...

Thanks so much for continuing to share your heart each day regardless of what is happening. I hope your unloading tonight helped you process your feelings and feel better. Tomorrow is another day, and we look forward to your posts. Hope you can get some rest as you continue to seek His face for answers (which you may not get this side of heaven).

 
At 4:44 AM , Anonymous Anonymous said...

I am so sorry about all of this. I sit here in tears as a read it. I know you do not know me. But Ashley's story has touched me deeply this past year. More importantly, you and Dave have touched me and made me a better person.

You are a wonderful mother. You are only being human to get upset at this latest news. I pray that the doctors will help her soon and that her real Father in heaven will also cure her as only he can.

Love, Pam

 
At 4:49 AM , Anonymous Anonymous said...

You might want to consider posting pictures of her hands in case someone here knows of a doctor or nurse who has seen this problem with other patients. This could be something that is solved quickly with simply the correct medicine and diagnosis.

 
At 5:04 AM , Blogger Susie said...

I came by way of another's blog, and I am also praying for you and your sweet daughter. There is such beauty in being real, and I know our Father understands your pain. You have such a strong faith that is evident in your posts, and I pray that you know how much it strengthens all of us out here reading this. Blessings and prayers to you!

 
At 5:20 AM , Anonymous andrea b. said...

I'm praying!

 
At 6:33 AM , Anonymous Anonymous said...

Praying for all of you today, dear Trish.... Thank you for being such a blessing to so many through this journal--I could never thank you enough for your graciousness in sharing dear Ashley with me and with so many others. Even though I have never 'really' met any of your family, I am so very proud of, grateful for, and blessed by all five of you. Much, much love in Christ.

 
At 6:47 AM , Anonymous COurtney said...

Trish,
I don't think yuo are weak at all. You are and have always been a strong example of motherhood and faith! Oh, how my heart ached for you in the midst of this struggle.. How I wish I could give you a hug and just pray with you! Know that we will continue to pray and lift you all up to our great God who does have a plan in all of this! Thank you for being so honest - I'm so glad that you have this outlet to do so. Don't worry you are not judged only loved!

 
At 7:46 AM , Blogger ManyBlessings said...

Good morning,
I was sitting here thinking about everything you had said regarding Ashley's symptoms and wondered, have they checked into Kwashiorkor (Kwash)? It's a malnutrition disorder frequently seen in 3rd world countries, and causes peeling of the hands and 3rd spacing. Just a thought. If her gut can't absorb protein right now, it would be a possibility.
Here are some links (warning, they are graphic!)...
http://en.wikipedia.org/wiki/Kwashiorkor
http://www.xanga.com/haitinurse4life/603845231/item.html
http://weblog.xanga.com/no_Im_not_a_nurse/612230283/item.html
d

 
At 8:02 AM , Anonymous Anonymous said...

Remember when Jesus was in the desert he cried out to his Father as well. It is okay to hurt, you are going through a tremendous stress right now and HE is there to support you and the whole country is praying for you.
Your honesty opens you up for the Lord to fill you.
Our prayers are still with you. God bless you this Sunday.
A friend in Michigan

 
At 8:10 AM , Blogger Carey said...

Praying for you and your family.

 
At 9:16 AM , Anonymous Anonymous said...

Trish, please know Ashley, you and your entire family are in our continued prayers. Our family and friends are praying for Ashley too. God bless.

 
At 10:26 AM , Blogger Wendy said...

Oh Trish, your post is heartbreaking. Please, please don't apologize for what you are feeling, for doubt, for fear or any of those other very human emotions. God does not expect perfection from us - what you are going through is beyond difficult. I hurt for your and Dave, and for little Ashley who is so beautiful inside and out and who has more courage than most of us. I am praying for the doctors' wisdom to solve this mystery and for strength for you, Dave, Ashley and all your family. He is with you; He has his loving arms around you.

 
At 10:41 AM , Anonymous Anonymous said...

Trish I do not know you, however I feel that I do know your heart through your writing. Please remember that Satan is the ULTIMATE DECIEVER and you are a GOOD MOM no matter how you feel. God will give you peace. I have prayed this for you. Do not let what anyone says or does sway you on your concrete footing that you have in CHRIST JESUS. God bless you today and I pray that you rest in Him as I know that precious baby of yours is doing. Jer 29:11

Allison

 
At 11:10 AM , Blogger Krista said...

II Chronicles 20:12b, '...We do not know what to do, but our eyes are upon you.'
I saw this passage today on another site and thought of you.
We are Praying for your family.

 
At 12:03 PM , Blogger Sarah's In the Midst of It said...

Praying hard for you and Ashley today--

 
At 5:14 PM , Anonymous Anonymous said...

wish there was something I could do........
Megan

 
At 1:03 PM , Blogger Brenda said...

Keeping Ashley in my prayers!

 

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