Ashley's Story

She will leave fingerprints all over your heart

11/12/2007

Its Me...

I don't know why I'm here. Just lonely I guess. So many thoughts running through my head. Ashley Kate is sleeping and I sit waiting to begin her replacement fluids. I will be running them until around 3a.m. The alarm will go off every hour and ten minutes telling me to replace the syringe so sleeping is kind of useless until I have finished the last one and have flushed her line. So I sit and wait and think and pray. The lights are all off and only the screen illuminates the room. The Christmas music is playing lightly in order to fill our room with the peace that it brings. It makes me cry. Not only because of the beautiful sounds that I hear, but also because of where we are this holiday season.

My morning devotional has been rehearsed in my mind all throughout the day. It was called, "But God". It began by telling the story of a young preacher named Vincent. A young man with a vision to build a church. He ministered, tended to the injured, fed the hungry and his congregation grew. Only there was a problem. His superiors didn't like the way he looked, the way he dressed, the place that he lived, or the fact that he gave his salary away to the needy of his congregation. Eventually they dismissed him. Hurt, angry and confused by what had taken place he questioned. His only desire was to serve God and build a church to serve Him so why hadn't God allowed it to happen? One day as he struggled with these questions he watched an old man as he struggled under a load of coal and he began to draw a sketch of him. At the time he didn't realize his true calling. This young man eventually became an artist known throughout the world. His name was Vincent Van Gogh. God had not called him to lead a church. He had called him to be an artist. I keep asking myself, "Was there anything wrong with Vincent's desire to lead a church?" No. I don't believe there was, but just think about what the world would have missed had he not followed the true calling of God in his life.

As I think about this story I ask myself, "Is there anything wrong with my desire for Ashely Kate to live a "normal" life. Free from hospital stays, medications, surgeries and the like? Is there anything wrong with the dreams I hide in my heart for her? The dream of someday having a chubby toddler running around our Christmas tree who answers to the name of Ashley Kate? No. I don't believe there is, but oh, what would I have missed out on if she had just been that "normal" child of my dreams. Hurt, angry and confused I still seek His true calling for our sweet baby knowing that it has to be so much larger than what I could have ever dreamed. The tears come and they don't stop as I realize more and more each day that she may never understand the world around her like we all do. Yesterday I shared with my sister that I don't think Ash will ever comprehend what Christmas is. I fear that her mind will not understand that it is a special day and not just another day. As I cried over the death of my dreams for this beautiful child my sister shared her thoughts about it. "Trish, but wouldn't it be wonderful for her if every day was just as magical as Christmas day? If her mind only ever found joy and happiness in each day and if she never had to understand the ugliness that is in the world around her?" I realized that she was right. It wouldn't be a bad thing if my Ashley never understood disappointment, hurt feelings, broken dreams. If she only ever smiled and played and hugged her daddy and patted her mommy. That would be just as beautiful. Just as magical. If that is what He has in store for our tiny miracle then why would I ever say, "But God, I wanted this for her or I dreamed that for her." Surely His calling for her life will be so much more than I could ever comprehend.

Dave was so right today as he said to me, "This one has been hard on her." Yes, it has. She has lost so much of what she had gained, but I know in my heart underneath the sadness, the pain, and the loss that her Father is here and He is working.

She lays behind me on the bed sleeping. Making sweet sounds as she breathes in and out. Her lashes are long, her cheeks still rosy although they are swollen and puffy, her little arms tucked behind her head, and she dreams. She doesn't dream of sugar plums, but maybe she dreams of her home. Maybe when she closes her eyes she can see her daddy, or her nursery, or Blake and Allie. Those are things she does recognize, and tonight I think I would say that is even better than Christmas trees, or twinkling lights, or stockings hung on our mantle. I would rather her comprehend family and what it feels like to be loved with out conditions.

I can't say, "But God, I wanted this or that for her. I will say, "Yet God, You gave us a miracle in this child and for that I will forever be grateful."

49 Comments:

At 11:00 PM , Anonymous cyn said...

Glad to have you "back." Still reading AND definitely praying for you and that precious little gift sleeping behind you.

 
At 11:19 PM , Anonymous Anonymous said...

We just finished reading the same devotional tonight. Thank you for sharing your life and your heart with us. You give us a much deeper perspective than we would otherwise have had. Your family continues to be on our heart and in our prayers. Terri S. in Arizona

 
At 11:26 PM , Anonymous dee buchanan said...

Trish, your words are beautiful as usual. Thank you for writing tonight. Praying for sweet rest and continued strength and healing for both of you.

 
At 11:32 PM , Blogger Elizabeth said...

Praying for you today as always...please find the peace in your heart that no matter what happens it is in God's will....only He knows what tomorrow will bring...but I pray that no matter what tomorrow will be better and the next day better than the last! Trish...you are lifted up by so many...may you always be blessed for what you are doing...raising such a precious angel! Sleep in peace angel!
Good night...
Love in Christ,
Elizabeth

 
At 11:40 PM , Blogger Gretchen said...

Trish, I just love your words and emotions, as I read your post. What a mature believer you are to be able to realize that "but God" is a dream of little thinking, and God has such a different, broader perspective. Thank you for your wisdom and the reminder that trusting in Him means surrendering our earthly dreams. I'm not there yet--but with your post, I'm getting closer. God be with you. Sleep well, my friend. I hope we get to meet on this side of Heaven, but oh, the tales we'll share once there. (((hugs)))

 
At 11:46 PM , Blogger Candy said...

Praying for you and Ashley. Ash knows love, she knows she is loved and she knows how to love back. With a smile, with a pat, she knows. And to sleep with her little hands behind her head, she has peace knowing her family loves her. What a wonderful family she has. God bless you. Praying for healing for that sweet baby, and praying that you can be home for Christmas. God Bless.

 
At 12:17 AM , Anonymous Janiece Baldwin said...

So glad to hear from you~~have missed your beautiful words. Praying for you, as for Ashley.
God knows the desires of your heart for your precious baby Ashley, as well as your desires for Blake and Allie. May He give to them as His heart desires.
Much love and prayers~~~Janiece

 
At 12:17 AM , Anonymous Toni in the midst said...

(((Trish))),
No words. Prayers though. Always prayers.
Blessings,
~Toni~

 
At 1:28 AM , Anonymous Anonymous said...

Trish--Just checking in to see who updated today and found one from Dave and you. Thank you for sharing. I have learned so much tonight by reading and have been blessed yet again. Your Ashley Kate is a miracle!

Praying and loving you and your sweet family from afar!

Shari

 
At 1:38 AM , Anonymous Dee Dee in NC said...

One of the wonders of it all is that He has given you and Dave the eyes to see in a way that most people don't. It is because of Him that you can have the discernment that you do. And it blesses me.
So good to hear from you. Whenever you (or Dave) feel like posting, I sure feel like reading. And praying.

 
At 1:48 AM , Blogger Mandy said...

still praying for your sweet little girl!!

 
At 3:35 AM , Anonymous Anonymous said...

Hi Trish,
So sorry for your lonely heart tonight.
My heart truly goes out to you. I can't tell you enough how awesome your faith and strength in our Lord is! You never cease to amaze me!
It is so good to hear from you. We are here. I can only speak for myself but I will be here for the duration. You do whatever you need to do for YOU and your family. I will be praying for peace and for Ashley to get well enough to go home to Texas!
I don't want to sound redundant but I want you to know every time you read these comments that I am praying for you all.
May the Good Lord continue to Bless you all!
Okla

 
At 4:48 AM , Anonymous becky said...

Dear Trish,

Still here and still praying for you and Ashley. Thanks for sharing your heart. You are being used by God in ways you can't even imagine as you share your faith, your struggles, and above all your love for Him and your family. May you feel His grace and peace as you begin a new day.

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

Hey Trish,

Just wishing you some comfort, sleep, and very soon -- joy. You are still quite amazing.
M.

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

Dear Trish,

Still here and still praying for you and Ashley. Thanks for sharing your heart. You are being used by God in ways you can't even imagine as you share your faith, your struggles, and above all your love for Him and your family. May you feel His grace and peace as you begin a new day.

 
At 5:43 AM , Anonymous Anonymous said...

You are in my prayers, I understand where you are with this post, I have been there.
Beth

 
At 6:21 AM , Anonymous Prayer Mom said...

Okla said it perfectly. I second the emotion.

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

Trish,
You have been on my mind a lot. I've been praying for you that you wouldn't feel too lonely now that Ash is outpatient and you don't have the encouragement of your blog friends.

You encourage me so much with you rwords. Your constant search for God's hands in all circumstances is such a reminder to all of us who are facing minor circumstances in our lives.

Ashley Kate is a blessing to us all, but part of that blessing has been watching you and Dave parent her.

Thanks for writing - we're still praying :)

Courtney in PA

 
At 6:41 AM , Anonymous Anonymous said...

I am thankful you have such wonderful support you can turn to(your sister). God spoke through her. we continue to pray through day and night for you all.
still praying in central IL

 
At 6:51 AM , Anonymous Anonymous said...

Trish thank you for sharing your devotion with each one of us. God is using you in such a mighty way to help so many of us to grow in our faith. Your words are always so eloquently spoken and encourage me daily. I pray that you got some rest last night and that Ashley rested well also. I love how she always has those precious little arms behind her head...not a worry in the world. Just trusting those who are blessed to take care of her. May you find peace today and strength from the Father and those of us who lift you and your family up in our daily prayers. God Bless You!

 
At 6:52 AM , Blogger KimberlyDi said...

I believe God created her to move millions. And you are her vessel. She wouldn't move people the way she has without you to channel through. You have a gift in her. You are gifted yourself.

I pray that God's plan includes healing Ashley and allowing the both of you to go back home to your loving family.

Ashley's mantra: praying praying praying

 
At 6:54 AM , Anonymous Jessica said...

"In God's time"...what a difficult concept for any of us to grasp, but I know that there is a reason for all of this and for the reason it is going on so long through this innocent young baby. Satan is trying to place doubt in your heart, so resist his attacks. The Holy Spirit has led you so far in the decisions you have had to make. Be persistant and praise God through this long storm. My little girl (McKenzie, 6) is now praying for Ashley and I will also everyday. May God place comforting arms around you. Jessica in SC

 
At 7:30 AM , Anonymous lori said...

Trish, thanks for sharing this with us! Know we are keeping you all in our thoughts and prayers every single day!

Love and hugs,
Lori

 
At 7:49 AM , Blogger Elizabeth S said...

What a beautiful post. Thank you for blessing me today.

 
At 7:57 AM , Anonymous Anonymous said...

Hi Trish - I read nothing yet but "I don't know why I'm here. I'm lonely I guess.." and I started crying! Honey, we are HERE! We are HERE!! It's going to be ok.

You are so loved and so cared for and you are also covered in prayer!! Those who love you and care about you will always be here no matter what, ok?

Kyle and I finally finished your package. We will send it off today. I can't wait for you to get it and I hope it will help to lift your spirits, if only for a brief moment!

Ok, I'm going back to read the rest of your post...I just want you to know that we are here, you are being prayed for and we love you very much!

Amy and Kyle

 
At 8:03 AM , Blogger Joyful Days said...

Amen to your beautiful post. Praying still for Ashley.

 
At 8:11 AM , Blogger Laurie said...

It is good to see your heart here Trish, not good that it is lonely and hurting, but that it is able to reach out in honesty. We are out here, praying for you as you walk this journey, asking God for all things excellent in His time. May He align our time with His time and give us all grace in the gap. Your sisters words to you about Ashley were so true and beautiful. She knows what she needs most right now, and this is that for every pain she experiences, she has a wonderful mommy and family that love her so huge. She will never be abandoned and each time she wakes, it is your loving face she sees over her and the Lords loving hands all over her. I continue to pray for both of you and that your heart will be full of His Hope. I love you.
Laurie in Ca.

 
At 8:16 AM , Anonymous Cari said...

"The LORD gives strength to His people; The LORD blesses His people with peace." - Psalm 29:11

I'm praying that verse for you today.
-Cari in Arkansas

 
At 8:22 AM , Blogger Sarah's In the Midst of It said...

I think you have written the words any mother of a special needs child feels--the struggle between wanting a normal life for her, and wanting what God has given instead. It's easy to say "God's will be done," but when it comes to the death of dreams for our children, it's hard to mean it! Sometimes I mean it, and sometimes I'd rather trade His plans for mine!!

I'm praying for you, that not all of your dreams have to die, and that Ashley makes gains later on that astound her entire team. What a testimony you've written this morning! I hope today brings you comfort. Nights in the hospital are tough.

Thank you for sharing your heart today.

 
At 8:37 AM , Blogger Wendy said...

Trish,

This is a beautiful post. I couldn't help but think that God has given you this amazing gift of writing in order to share His Word.

My heart hurts for you this morning too. Of course you should be sad at the death of your dreams - and that doesn't make you "bad" or "wrong" to have them. What parent doesn't wish for that for their child?

It is very special that you are able to use God's Word to help you through these rough spots. Your faith is so encouraging, that I want to share something with you.

My father has been quite ill over the last few years. He has a progressive illness that is causing dementia - it has been very hard to watch him decline; to watch a man who was an engineer and in the top of his class begin to lose his ability to comprehend a TV remote or even how to use a telephone. I was recently back East visiting with him and just last night was telling my husband that I have been feeling so depressed and sad since coming back to California. I feel like there is nothing I can do to help my Dad; nothing I can do to change the course of his illness - and I fear the day he will no longer know who I am.

So this morning when I read your post, it gave me the lift I needed. It made me look at things a little differently. I'm still sad; but I see that there is a plan for all of us; and God never leaves us.

Thank you, Trish, for sharing your thoughts this morning.

 
At 8:44 AM , Blogger Sun said...

You have a beautiful heart. God is being glorified through each and every word you write -

My family is and will continue in prayer for yours! May God continue to raise up His people to walk along side you and your family during this time. Sunshine

 
At 9:12 AM , Anonymous Stephanie - KCMO said...

Thank you for your beautiful words. Still praying. Stephanie

 
At 9:15 AM , Blogger Amy T said...

Oh Trish! What a beautiful post! That is so true and so hard to put into practice. Thanks for reminding me to say "Yet God" instead of "But God". Praying for you and Ashley to have a great day today.

 
At 9:53 AM , Blogger Rachael said...

you are an amazingly strong woman : ) praise God. thanks for sharing and i'm still prayin for you and ashley kate and the family.

rachael from Pittsburgh, PA

 
At 10:03 AM , Anonymous Anonymous said...

What beautiful thoughts. Thank you for sharing with us. Praying for you and your family.

 
At 10:05 AM , Blogger Michelle J said...

YES! Trish...YES! little Ashley! Do not be lonely because we are all there with you!
Michelle

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

I am so glad you are here Trish. I miss you alot when you are quiet. We are here for you. We hear you and respond. I know it must be so lonely for you as everything moves on and you are still. God can make it possible for you to be home by Christmas. I am praying that for you.
You know you were chosen special to be doing this very thing at this point in your life. It is not an accident, God ordained you and Dave because he knew just what Ashley needed because he cares so much for her.He also knew Blake and Allie will be ok because you both are great as parents. I am so grateful all 3 have you as mommy. I am sorry you are missing Blake and Allie but I know God will bless all of you for the sacrafices all of you are making. You are a great team.
Please know you are loved and we are here for you always. Write whenever you want I am checking on you alot.

 
At 11:22 AM , Anonymous Grandma said...

Thank you - I love you! Still praying.......Love and Hugs, Grandma

 
At 11:22 AM , Anonymous Anonymous said...

Thank you for sharing with us. Wow, that is such a wonderful inspiration.
Beautiful Ashley is making an everlasting impact, along with you, and the rest of your family.

You will be in our prayers.
Lee

 
At 11:39 AM , Anonymous Anonymous said...

You are here because this is your way of getting everything out. I can't imagine how frustrating some of your days are so typing things out can possibly validate your frustration or maybe make you see that something maybe shouldn't bother you as much as it is.

I don't know if that made any sense.

Anyway, thank you for writing and sharing more. I pray that you rest well will get back to being comfortable on YOUR blog. Don't let the devil take away your joy.

Paige

 
At 12:58 PM , Anonymous April in Colorado said...

We read your words and we think we understand the difficulty of your daily life. We see pictures of your little pickle and believe that we truly know what her struggle must be and how her struggle is your very own.

But I know now we don't really understand. At least I don't. How big must your load feel when your decisions aren't just for you or Dave or even Ashley, but decisions that perhaps are far greater than you could imagine.

I pray for you, dear Trish, and I am confident that our loving Father will ensure that yours and Ashley's ultimate purpose and His will is in HIS hands. After all, I bet that Van Gogh didn't have half the people storming the gates of heaven on his behalf as does Ashley and your family...and look how brilliantly his life still resonates through history!

Prayers and hugs...

 
At 1:47 PM , Blogger Monique said...

You touched my heart today with this. It is amazing how much faith and love you have for that little girl and your family. Bless you for posting and sharing this with "the world". You all mean a lot to a ton of strangers.

 
At 3:47 PM , Anonymous Lori said...

I'm so glad both Ashley's mom and dad are keeping us updated. I've never left a post for you before but admire both of you and I think about how lucky Ashley is to have you as her mom and dad! When I go to check if you've left a post I say, "I need to check on my little Ashley". I guess she's in all of our hearts and how powerful all of our prayers must be.

 
At 4:12 PM , Anonymous Amanda said...

You would think they would have a better way to do replacement fluids! That seemed a little crazy to me when I saw the "set up" and I'm thinking they must not realize that sleep is kind of important :o)

I hope you were able to get some rest and Ashley is having a good day. This post brought tears to my eyes. It will be great for you to see Dave this week since you are feeling especially lonely right now. If you need a change of scenery, let me know...

Sending prayers,
Amanda

 
At 7:50 PM , Blogger Laurie said...

Praying for you girls to get sweet rest tonight and for healing to continue in Ashley's little body. I hope you are getting more privacy in your new place and the Lord continues to keep your hopes high Trish. You are thought of so many times during my day and I ask the Lord to bless you.
Love, Laurie in Ca.

 
At 8:13 PM , Anonymous Anonymous said...

Trish your words are beautifully written. It sounds as though you are gaining serious spiritual knowledge that I know I would love to attain. I do not know you but your words make you sound like someone after God's on heart. Ashely continues to be on my prayers as does your whole family. I know you are not where you want to be but I am trusting that God will be very close to you during this time. God bless!
Allison, NC

 
At 2:25 AM , Blogger Sarah Rahija said...

Dear Ashly, my little girl, Erin, asked me about you today. She asked me where you were, and as it had been a while since I had checked in with you, I didn't know where you were in this process. However, we had a little chat with God, asking Him to be comforting to you, and tonight I came to check in for sure where you are this beautiful November day.

I see, that I did not really have to check, for I know that you are exactly where you belong, safe in the arms of your Father, in the care of your wonderful Mommy, and in the hearts of your fantastic Daddy, Blake, and Allie, as well as your family, and this blogging family. Reading your mommy's words reminded me that nothing, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord, and as I thought about you, and read that you were 700 miles away from Texas, I could see that you are in His care! You are an original, a priceless work, signed by the Creator, and oh, what a masterpiece He made in you!

Hugs and kisses from your friend Erin in Kansas, and share a few with your mommy from another mommy who loves her, even though we've never met. Goodnight, sweet girl!

 
At 4:05 AM , Anonymous Anonymous said...

Praying that Ashley is doing better today!
Hope you feel better too Trish.
Praying for you all!
May God Bless your family
Okla

 
At 7:21 AM , Anonymous Prayer Mom said...

7:00 am Oklahoma time Wednesday

God has suddenly drawn me to pray for Ashley. It feels urgent. All who read this, THIS IS A CALL TO MOMENT BY MOMENT PRAYER FOR ASHLEY, all I know is this is going to be either a very hard day or a day of miracles. Please join me in constant prayer today.

 

Post a Comment

Subscribe to Post Comments [Atom]

<< Home