Ashley's Story

She will leave fingerprints all over your heart

11/15/2007

Why am I still awake?

I often find myself asking this question. I am really, really tired, but sleep does not come. I would like to say that Ash is sleeping on the bed behind me, but that is not really true. Her replacements ended about an hour ago and when the pump alarmed she did too. She has been awake rubbing her little eyes, scratching her head, and it looks to me like she is also wondering, "Why I am still awake."

Dave will arrive in Omaha in about 6 more hours. I have thought a lot about his arrival tonight. I am so thankful he is going to be here with us for a few days, but at the same time knowing he is coming alone is difficult for me. I miss Blake and Al desperately and my heart hurts knowing that without God softening hearts, moving in mighty ways inside Ashley Kate's body, and basically giving us a Christmas miracle that I will not see them until they arrive here in Omaha for Christmas. Asking them to return here for another holiday seem so unfair to me. My heart was holding onto big, big plans for the holidays this year. Letting go of them has been a struggle. Dave and I will be working out the details of trying to hang onto our big Christmas surprise for Blake and Allie. We are going to see what parts of it we can still make happen and what parts of it we will have to let go of because I am not home to help complete it. We have a lot of planning and rearranging to do during this visit. I was really looking forward to celebrating Christmas for the first time with Ash in our home. I know some have encouraged me to "get over it", but its not that easy. God gave me this personality and a big part of me is tradition, family, memory making, and holidays. I lay awake almost every night thinking of ways to make it a more personal Christmas for the kids. Last year we basically gave the children new wallets with money inside of them because flying home with Christmas gifts was going to be too difficult. I really don't want to have to do that again. If we can still pull off their Christmas surprise then they will see it before coming to Omaha and will be able to enjoy it once they return. I think it will bless them and make their adolescent years very, very special. We'll just have to try to make it happen without mom.

I had hoped for Ash's bowel to wake up, kick in, and perform its own little miracle today. It didn't happen. Today's appointment is not going to bring us the news we were hoping for. Her output has been very, very high the entire week and no moves have been made on her feeding pump or TPN pump since Sunday. Each day I receive a phone call from the dietitian asking if I have been able to stop Ash's TPN. Each day I say, "No, not yet." I fully expect them to make us take a few steps backwards today. I am trying to prepare myself for the disappointment that may come. This such a long, long journey. Restoration is hard to come by after rejection. That is what I am learning.

So where is the blessing? I ask myself this question and it doesn't take long to answer it. Everywhere I look is my answer. Sure my heart is sad and lots and lots of tears fall from my eyes, but I laugh a lot too. I smile when I see Ashley Kate all sprawled out in the middle of the big bed forcing me to curl up on the small one. She is absolutely spoiled and I love that I get to do that. She just likes my bed more than her pack and play and the little bed is not big enough to safely lay out all of the tubing and pumps. This lands her little 2 year old body in the very middle of the big bed. Perhaps this is why I am having a hard time sleeping(I might add that the little pickle is now snoring behind me in MY bed). Her life is a blessing. We may be spending the holidays at the hospital for the third year in a row, but she is still with us and that is a blessing. I know many, many families who will be without their sweet children this holiday season and I am know that is far more difficult than what I am experiencing. I think of them so often. Her organs are a blessing. Without them we would be without her and I can't imagine the pain of not being able to even try. Our last year with her has been a blessing. We were given time and when you are faced with losing a child time becomes very, very precious. Making it out of the hospital and into this room is a blessing. It is peaceful and quiet. It is private. It is "ours" and it allows us to open its door to only those we choose. When staying in a hospital you have NO choice as to who or how many come through that door and what times of the day or night. When our door opens we now know that it opens to kind, friendly faces who have chosen to come visit. What a blessed feeling that is. In just a few more hours we will get to open that door to Dave and I am getting really, really excited about that! That is a blessing!

Although it as been a tough couple of weeks God has still been so very good to our little family. He continues to give us strength on the days when we have none. He continues to comfort and heal our hearts when they have been injured or disappointed. He continues to provide friends and their support to us in the very moments that we need them most. He is good. He loves us so very much, and He is working in Ashley's life and mine. He is God and He is near.

Again, I ask myself, "Why am I still awake?" She is sleeping and I think I should probably try to sleep a little myself. Morning labs and meds are gong to show up all too early if I don't lay down for a while. Goodnight guys(or I guess I should say good morning). Take care, Trish

30 Comments:

At 5:07 AM , Anonymous Anonymous said...

Hey Trish,

IF, and I do say IF, because as you know this thing can turn on a dime (IN THE POSITIVE DIRECTION TOO!) you spend Christmas in Omaha, there is a really wonderful Holiday Inn just down the street from you. We used to stay there whenever our family was all together, as a treat. We joked that it was "vacation" and the pool was a really fun time, especially in the winter months. I went to the local party store and got all summer decorations and made the room like a luau. (Ash will LOVE to see her siblings splashing and laughing.) The staff is familiar with the hotel, as it is often the site of their "Transplant Reunion." Then there is a mall not too far from that where the kids might be able to see Santa. It might make your heart happier to see the Santa there, rather than just the hospital visitors. (Bless them for their intent. But how much safer is exposure to a Santa that has been around every sick person in Omaha, than a Santa who has been around all the well ones?) Just a thought. The Ronald McDonald House, even if you are not a resident, is very generous about the holidays. Even if just for a change of pace, it is a pleasant walk, a meal, a conversation.

Remember, you eat an elephant a bite at a time. Please do not be too discouraged by anything they say today. Remember, you know Ashley better, and God is the only one who knows all.

And get some sleep! ALL of you!
M.

 
At 5:24 AM , Anonymous Anonymous said...

Praying for your appointment today.
Beth

 
At 5:49 AM , Blogger Karen said...

Woman you are amazing. I appreciate your honesty in all you are struggling with. Let me just say that there is nothing wrong with holding on to dreams. Isn't that what you are doing with Ashley? So hang on to your Christmas dream. God can do anything. And He has a purpose for everything. He still has plenty of time to work it all out. So, I will keep praying that your heart will be at peace and hopefully you will be home for Christmas. And if you are not, God will provide. (I guess if you are like me though, you like to "help" God along...) God bless!

 
At 6:00 AM , Anonymous Courtney said...

Hmmm....I'm trying to picture Dave sleeping in the Pack and Play, because Ash has taken over the big bed :) I am so glad that you will be with him in just a couple of hours! I continue to lift you up, praying for a Christmas miracle, so you can celebrate the way thatyou sesire to...

 
At 6:10 AM , Anonymous becky said...

Dear Ones,

You will all continue to be in my prayers today. I send love and grace from Kalamazoo!

Hugs,
Becky

 
At 6:41 AM , Blogger Elizabeth S said...

Trish, I can't imagine how hard this is for you. I, too, love tradition and I am not one of those who say "Get over it." I will be praying for you today as Dave arrives. I will be praying for your meeting and I will be praying for your planning for the kids Christmas surprise, that you can make it as special as possible. From what I now about Blake and Allie, they will appreciate whatever you do for them. And from their perspective, they will love Christmas because they are with you! You are an amazing woman, even if you don't feel like it. I hope you are blessed in a special way today.

 
At 7:16 AM , Anonymous prayer mom said...

Praying for today's events to be positive and praising God for all He has done thus far.

God knows how important Christmas is to you. Remember how often God is in the details of our desires? God isn't finished with Christmas miracles yet.

 
At 8:15 AM , Blogger Laurie said...

Trish, I am one who continues to hope with you for a holiday miracle, to celebrate the birth of Jesus, who is with you and Ashley at this moment. He knows your hearts desire to be with your family, and you can trust Him. I will be praying for your appointment to have good news, whatever that may be and for you and Dave to feel complete peace through it. I continue to ask God to guard your heart and mind in Jesus. He is always with you and I pray His presence in your new temporary residence is felt minute by minute by you girls. Hang on Trish, help IS on the way, in His perfect time. You can trust Him.

Love and Peace to you,
Laurie in Ca.

 
At 8:41 AM , Blogger Sun said...

I am praying for you and your family...really praying. I hurt with you on the disappointments and I hope with you in Christ. You are so very precious! I wish that I could hug you but instead I can and will pray for you! Sunshine

 
At 8:46 AM , Anonymous Anonymous said...

Once again, your strength in a hard situation has amazed me. It is your honesty in the hurt, disappointment, and confusion that points us all to the Creator...and that is a blessing.

We've been faced with a hard situation this week...disappointment, extreme sadness, hard decisions. I understand those feelings even with blessings all around.

I will continue to pray for a Christmas miracle. I have my idea what that miracle would be for your family (home for Christmas!)...but I know in my heart that even if that is not the miracle He bestows...He will have one for your family.

Kristi in Texas

 
At 9:10 AM , Blogger Elizabeth said...

Trish,
Honestly...I wake in the middle of the night here lately and think of you and say a prayer! Maybe this is because you are not sleeping...who knows. I will be praying from now on that you will get some MUCH needed rest. It has to be so hard trying to take care of the baby with no sleep yourself! God is there with you...let him carry the burden while you sleep........rest peacefully!
Love in Christ,
Elizabeth

 
At 9:13 AM , Anonymous Anonymous said...

Bear one anothers burdens...We are commanded to do this. It is not a suggestion, not if we feel like it,only if we agree with the person, only at certain times of the year, or only for other people to do. If I was to "bear" your burden, I would pick it up struggling to lift it off the floor. Grunting and sweating, I would be unsteady and afraid that maybe I had taken on so much. If I was to "carry" your burden, it would become my own as I hold it close to me. I would feel what you feel, the shifting, the uncertainty, the fear, the broken dreams, the anguish of missing my other babies, the loss of my husband's companionship. I would feel exhaustion...You get the idea. The possible loss of Christmas at home. I would be trying to juggle how to process the loss of that dream, I would mourn, I would fret, I would cry. Let us in the body of Christ carry Trish through this time as we are "commanded" to do! Let us pray that Christ will lift her burdens even in the midst. In sincere prayer today, Colleen

 
At 9:36 AM , Anonymous Kathleen said...

Praying for you today as you go to Ashley's appt.

 
At 9:37 AM , Anonymous Anonymous said...

I had a thought earlier today - I hope you will be blesed to hear it.

Earlier this morning I was pondering your post "she is....loved" and it dawned on me that were it not for you, I would not love Ashley Kate. And it wouldn't be because I didn't care for her or that she didn't deserve it (because she does!), but simply because I would understand how.

But as I read your love for her overflowing through all your posts, I was drawn into the story and caught up in that love so that pretty soon I loved her, too.

Now isn't that the same with our call to display love for Christ? The more we are open about our love for the Lord and let people see it, the more people are drawn into the beauty of it and begin to understand. The more intimite we are with Christ and transparently let it be known, the more those around us begin to understand how Christianity works.

...that is, of course, leaving out the love God has for us, which is greater by far. :)

Just wanted to let you know God used you and Ash as an illustration this morning to teach me how important it is to "let your light shine before men". God bless!

Heidi

 
At 9:39 AM , Anonymous Anonymous said...

EDIT: that is, "I wouldn't understnad how"

Proofreading is important! :P

- Heidi

 
At 9:40 AM , Anonymous Anonymous said...

*understand

 
At 9:55 AM , Anonymous Anonymous said...

Trish-

I hope "many people" wouldn't expect you to "get over it." My goodness, sweetie, you have been through so much and yet you look to Jesus for your strength and find the blessings in the midst of the storm. It's OK to have those dreams of being home for Christmas. I am like you, tradition, making memories is so important.

I will continue to hope that a "Christmas Miracle" will come for you and that you can be together at home with your family.

The Bible says to carry one another's burdens. I believe that is a special command for believers. Know I am doing my best to help you carry it.

You are special, precious, and so loved.

Know I am praying for all you need me to.

Lovingly,

Shari

 
At 10:36 AM , Blogger julie said...

Hold on to your dreams Trish. God placed them into your heart for a reason.

Praying for all of you today.

Blessings,
Julie

 
At 12:16 PM , Anonymous Jule White said...

Praying for you all today Trish. I pray that your meeting goes well and that you and Dave come away with peace and clarity.

Praying for safe travels for the children and for Dave. Praying for that Christmas miracle and for the "special" surprise for kids.

Holding you close to my heart and sending much love your way.

Love, Jule White

 
At 12:24 PM , Blogger Sun said...

You guys are on my heart very heavily this morning - just wanted to let you know we are praying. Sunshine

 
At 12:35 PM , Anonymous toni in the midst said...

Heavenly Father,
Please make your comfort very present and real to Ashley, Trish and her family today. Please make your presence tangible. Continue to meet their needs and provide strength for each moment, each decision, each challenge that comes their way. I pray your healing touch upon their sweet child, Ashley. I pray your physical comfort for her. I pray that joy continues to well up in their hearts despite the daily challenges they face as a family.
In Jesus' name,
Amen.

 
At 12:55 PM , Anonymous Prayer Mom (again) said...

Yes, Colleen. My spirit totally agrees with that prayer request. We will stay on it.

 
At 2:35 PM , Anonymous Anonymous said...

I hope and pray things went better than expected today. :-) If not, as M. said, the Holiday Inn is fabulous, and probably even moreso than he/she knows! They just completely renovated it into something of a miniature Great Wolf Lodge. It would be a wonderful surprise for them if it comes to that.

I know we're all praying for the best today, though, and that you get released much sooner than expected!

Brenda

 
At 3:56 PM , Anonymous Anonymous said...

Trish,

My family and I (ALL eight of us) are leaving this evening for a trip for 10 days. We will not have internet access during this time, however, we will continue to pray for dear, sweet Ashley and all of you during this time. You are in our thoughts often and we look forward to a wonderful report when we return. God Bless! As I know He already has! TM in WV

 
At 4:27 PM , Blogger ManyBlessings said...

Praying for your hearts as we enter the Holiday Season. You are such a blessing to each of us who reads here daily. Thank-you for allowing us the wonderful, wonderful privilege of being able to pray for you all.
d

 
At 7:40 PM , Blogger Sarah's In the Midst of It said...

Trish, I'm continuing to pray for that Christmas miracle, and also for you to have a wonderful time with Dave.

You do such a beautiful job of writing about the balance between feeling disappointment yet seeing blessings at the same time. You are always real, and I think that's why your readers love you just as much as your sweet daughter. I hope this next week brings in some wonderful changes for Ashley, and that restoration comes soon.

Praying for you girls!!

 
At 9:45 PM , Anonymous Anonymous said...

I quickly read this post before I left this morning for a retreat and the heartache I could feel in your words brought instant tears. I just felt SO sad for you. I re-read your words this evening and found how truly beautiful it is that you seem to find the blessings in everything. How you can stay so positive AMAZES me in so many ways! What a wonderful gift you have (trust me, I'm trying to learn!). I'll be praying EXTRA hard for you tomorrow during your meeting. You know how to find me if you need anything :o) (I still think you need to ask if they can give you a BAG of IV fluids and an ACTUAL pump for replacements so you can get some sleep!). Good night. =)Amanda

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

Hi Trish,
Thank you so much for being so honest in your writing. I pray for you, Ashley, Dave and the kids every night before I go to bed. I am so inspired by your faith. You make me want to be a better person.
I am not giving up on you and Ashley making it home in time for Christmas. With Gods help we can do mighty things.
I pray that your time with Dave over the next few days will bring you rest, comfort, and wisdom in the decisions you will be making.

Michelle

 
At 6:59 AM , Anonymous Susan Roberts said...

David and Trish,
We are continuing to pray for your family. Love, Jackie and Susan

 
At 8:11 AM , Blogger Laurie said...

Hi Trish,
It's Friday and I wanted to let you know I am praying for your appointment with the surgeon today to provide you with some solid answers. I hope your time with Dave is restful and spirit lifting for you both this weekend. Prayers for Ashley's healing continue and just remember that God has His hands and heart all over you and your family, always. He will be sitting in over the appointment today and I pray you will feel His presence and peace right there.

Love you, Laurie in Ca.

 

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