Ashley's Story

She will leave fingerprints all over your heart

10/17/2007

Trying

So sorry if you have been worried. Sometimes the connection around here is difficult to hang on to. I attempt to post and it disappears because my connection has been lost in the writing of it. Thank you for your patience.

I wake up each day and just keep trying. Trying to hang on to some kind of routine. Trying to help Ash feel better. Trying to stay positive. Trying to be connected to the things at home. Trying to keep up with the laundry. Trying to pull myself together. Trying to be a better me.

Then there are days like today when all of the "trying" just become a little "trying". Trying to throw myself together with a ten minute shower, no electricity any where near the mirror, and a half done make up job because I have lost the last shade of the tan I showed up with. When you feel yucky, your day is... yucky. Today I definitely feel yucky. My hair is too long. My roots are in desperate need of some color. I am still walking around with 6 nails on and 4 nails off. My feet are aching for a pedicure and there is just no pulling myself together when I feel like this. How I wish I were one of those always "put together" wives or moms. The truth is that in the best of circumstances it takes a lot of work, and I still don't achieve that "put together" look. A hospital room is not conducive to working magic on this run down, over weight, thirty something mommy. I am afraid I am not very good at being a "stay at home/hospital mom". I wasn't blessed with the face, hair, or body that can pull this thing off flawlessly(although some others do).

The good news is that Dave is 700 miles away and he doesn't have to know how bad I look. Oh, yeah the camera came yesterday. That 700 mile away thing isn't going to work for me any more. We hooked it up last night and it scared me. There I was looking at the face of this incredible man that I get to call my husband and there he was looking back at me. Tired, wrinkled, gray, and not so attractive anymore. What now? Now is when real life kicks in and those marriage vows are being put to the test. He has to look deep inside my heart to find the inner beauty that resides there and try to love that enough to look past the "shell' that I have allowed to crack and fall apart. Heaven help him cause he is going to need it!

Ashley Kate on the other hand looks great. She doesn't feel great, but her color is amazing. Her cheeks are rosy and her skin always glows with that natural tan she was born with. She too is trying to pull her self together, but that chest tube is making it a little difficult. She doesn't feel good enough to sit up today and she half heartily tried to hold a toy or two, but gave up. They are keeping her on the dry side and that makes her feel yucky and miserable, but her chest tube is still putting out too much fluid. Another 180ccs have found their way out of that left lung. We will not be moving out of the PICU until the tube is removed. The tube will not be removed until the amount of fluid exiting her chest becomes a normal, reasonable amount. For now she lays in the bed getting lazier by the day because she just can't get herself pulled together either. I rub her feet and exercise her little legs while she lays still. I sing songs and make her hands and arms do the motions with me trying to give her some sort of movement, but she doesn't really appreciate me for that. I keep trying with her anyway.

Its just one of those "trying" days for us here in Omaha. Longing to be home, to be outside, to be anywhere but here. I guess its on days like today that trying to find the part of His plan that needs to be fulfilled in my life gets a little "trying".

26 Comments:

At 2:16 PM , Anonymous Courtney said...

I'm praying and hoping that your trying days will soon be over :) I'm so glad the cameras arrived! I bet you can't wait to tuck your big ones in tonight, even though it will be bittersweet. Praying that Ashley has a good day and that the fluid drains itself out soon! I know how much you were looking forward to being outside with her. Hopefully, that day will come very soon!

 
At 2:21 PM , Blogger Belle said...

I have been following your story for a few months now but have never posted. I think of you and your entire family daily and pray for you all. I understand being a Stay at Home/Hospital Mom. My daughter has a brittle bone disease and has been in and out of hospitals for her entire 7 years now but we've faced nothing like you face now or in the past. I can't say I know how you must feel in the face of the possibility of losing your child. I can only say I understand how confining and constricting a hospital can be.

I also know the moms you speak/write of when you say there are some who can pull it all together. I definitely am not one of those either!! As long as you are pulled together for your sweet Ashley and your family that's what counts. :)

Just know another friend is praying and thinking of you and yours and the situation in which you find yourself.

:)

 
At 2:22 PM , Anonymous Anonymous said...

Trish,
I've been reading
Ashley's blog for about a month now. Wow! I am amazed at how well you are handling all of this. I do pray for you and Ashley and your family. I think that right now you have the greatest beauty ever. You are serving your daughter in the most loving selfless way. You have a gentle, sweet spirit in every entry I've read. That is 1000 times more lovely than hair,makeup and perfect nails. I will continue lifting you and your family before the throne.

 
At 2:24 PM , Anonymous Anonymous said...

Hang in there girl! You have the glow of mommy - it's good enough. I am inspired an impressed with your grace and faith. Thank you.

 
At 2:42 PM , Anonymous Anonymous said...

Hi Trish. From what I have read of Dave and the way he writes about you, he sees you as beautiful no matter how you feel or feel you look that day. You have been blessed with a wonderful husband who loves you and your family very much. I know it's hard to see it yourself on days like this but I bet Dave, Blake and Allie see you as the beautiful woman you are and are just happy to connect with you with the camera.

I can't imagine all you go through each day at that hospital. I have learned so much from what I have read on this blog and I thank you for opening your heart and life to us.

 
At 2:45 PM , Blogger Denise said...

Oh how I know the feeling of trying to pull off the 'stay at mom/hospital mom' thing. I still haven't figured it out! You are doing a great job. We are continuing to pray each day for you. My five year old daughter is now the one who has taken over our prayer time and she remembers to pray for Ashley each morning. Special babies have a spot in our famiy's heart! Hang in there and remember to cast all your cares on Him, for He cares for you! (1 Peter 5:7)

Be blessed ~
denise

 
At 2:46 PM , Blogger Carey said...

Thanks for the update. Praying for your trying day to get better.

 
At 3:07 PM , Blogger Gretchen said...

Trish,

In the best of times, I can't pull off the SAHM/Home school mom fully put together with hair always flawless and lipstick not askew. I think she's a myth. Let's not let "her" (myth-mom) deceive us against what's really important, and that's loving our God, and loving our children/families. Yes, I totally understand that you're in need of a pick-me-up, and that may include mani and pedi, but I hope you'll never believe for one moment that any of us (especially Dave) think you're anything but amazingly beautiful. That said, I'll continue to pray for you about this, because I know what it's like to feel yucky and to just want to look in the mirror and not have that reflected back at you. But, you're beautiful. I'm so sorry today is "one of those days". I pray tomorrow will be better and that you'll be headed to the PICU.

 
At 3:11 PM , Anonymous Anonymous said...

I can tell you this...your testimony is more beutiful than any hair color, perfect makeup, manicure, pedicure, or tan! Keep holding strong. We're all praying for you!
-Cari in Arkansas

 
At 3:12 PM , Anonymous Anonymous said...

I pray that you won't be to hard on yourself....remember that Dave chose you for better or for worse...and I am betting that he thinks you are beautiful no matter what. You and your family are so very precious and I continue to pray for you and especially that Ashley will feel better today. May you continue to feel the love of so many believers that go to our Heavenly Father at all times of the day lifting you and your family up in prayer time. What a privilege to pray for Ashley and her family. God Bless you!

 
At 3:19 PM , Blogger Troy and Melanie said...

Just wanted to let you know that we are praying. Hoping and praying that these trying days will soon end. I am so excited that your web cam has arrived. I know it must make it somewhat easier being so far away from each other. You are never far from our hearts....our prayers will continue always.

Much love and prayers

 
At 3:23 PM , Anonymous April in Colorado said...

You know, my nephew had cancer when he was 2. Just starting to get active and talk and appreciate his surroundings. His baby brother had just been born weeks prior to his diagnosis. He lost a kidney and lot of back muscle. We watched throughout that year in sadness as his hair grew back in gray and he lost his voice entirely for months. He was too sick to do anything for the longest time. We wondered if he could make it through all the physical trauma of getting better. He was not allowed to ride a bike, skate on a skateboard, dive in a pool, or play in the bumper cars until he was about 6.

Today that little 2 year old is 14. He plays baseball like a true champ (with a kidney belt, of course), swims like a fish, runs faster than you would believe and plays guitar like Eddie Van Halen. He doesn't remember, at all, the hospital stays, the sickness, the endless pokes and punctures and surgeries. Not any of it. He thinks he was born with the scar that wraps from one side to the other, around one side of ribs to the next.

Ashley will move on past this. You will, too. And you will be stronger, wiser, more humbled, and more joyful of God's love. And maybe even learn to play a mean guitar.

You never know what God has in store, but this too shall pass.

You are so strong and so admired. Roots and all! :-)

 
At 3:25 PM , Anonymous Kathleen said...

I don't have it all together and I am not living in a hospital! No matter how yucky you feel, Dave and the rest of us sees your beauty! To Ashley you're her beautiful Mommy. It always amazes me that I can be feeling bad about myself and one of my kids will tell me they think I'm pretty. I'm sure Ashley is thinking the same about you! Will keep praying that you get home soon. Oh, with the lighting in the room I'm sure they can't tell anyway on the web cam.

 
At 3:25 PM , Blogger Just little ole me said...

Praying that you are comforted during these trying days! Continued prayers for little miss Ashley. May God continue to give you and your family strength and healing.

 
At 3:32 PM , Blogger Laurie said...

Trish,
No amount of "Applied Outer Beauty Aids" can even touch the inner beauty that shines through your words and your heart. Trust me, I know this is what Dave sees everytime he thinks of you. The beauty of Jesus glows all over you. I am sure most moms feel the same at one time or another but I know that your face is the most beautiful one Ashley looks forward to seeing each time her eyes open! Just know you are prayed for 24 hours around the clock out here in Ashleys "Love Land" and God is keeping watch over her healing. All of your family including the grandmas and grandpas are in my constant prayers. Their hearts must be so weary for you and Ashley and I ask God to lift them up too.

Love, Laurie in Ca.

 
At 3:39 PM , Blogger KimberlyDi said...

Don't focus on vanity right now. It's a girlie thing. You are at war with transplant rejection - not competing in a beauty contestant. Dave has to miss you so much that having the chance to see you, you've probably never been more beautiful to him.

Dark roots? Right now, that's a badge of honor. You've put your little girl first. You're by her side instead of at a beauty parlor. Broken nails? Battle scars while fighting for her life.

Be proud of yourself. May the Lord bless you soon and return you both to your family. Return to your comforting routines. Return to normal.

Banishing vanity isn't meant to sound harsh. We value ourselves too much on looks and not enough on the goodness inside of us. I've no doubt that Dave finds you beatiful no matter what.

 
At 3:42 PM , Anonymous Molly said...

Oh honey I wish I could come right up there and give you a pedicure and a manicure. The hair I am sure I could figure out but I bet you would probably do better with a cap on. HAHA
As one of those mom's who seldom gets that all together look I can relate to how you feel. My hair is too long and I am only missing one nail and it is driving me crazy. I so love it on those rare occasions when I do manage the all pulled together look and someone I know does a double take. I always say "I sure clean up good don't I"

Just know that I am praying for you and asking God to help you feel as beautiful on the outside as I know you are on the inside.
Molly

 
At 4:10 PM , Anonymous heidi said...

I've longed to be one of the beauty moms that can pull back all her hair in a pony and look fantastic. Not me. I take some time to look this tired and ragged. And as for the nails, I gave up long nails and glueing them together once I had kids. It's more relaxing to not have to fuss with them.
I know what you speak of... when I'm having a bad hair day... as awful as it sounds, I just don't feel good that day. Than a friend lost her hair from cancer. I try to look at it a different way now. But, I wish I could pull a few unragged days together.
Your inner beauty does shine, I can see it from here!
As for the camera phone... do like they did in the cartoons, hold up a nice smiley face picture in front of your face when talking to the hubby!
You are indeed loved, hair/or not, nails/or not.
How about an extention cord so you can reach a mirror better?
hugs, love, prayers, and good wishes,
Heidi in CT

 
At 4:19 PM , Anonymous Anonymous said...

Trish - I would so much rather look like you and be YOU because of who you are and how you have been through all of this. Every day you witness to me. Every day God uses you to talk to me. How many times I have prayed to have your faith and have the same realationship with Christ that you have. You inspire so many! So, I think that no matter how "bad" you think you look - I would look even worse! Look at all you have been through...I don't know that I would be able to endure all you have endured. You will have so many jewels on your crown in heaven!

I asked a while back and wanted to ask again for your permission to send you a CD that has a lot of Christian artists on it. These are just songs of inspiration, songs of love and encouragement. Phillips Craig and Dean, Mercy Me, Jeremy Camp. I would love to send it to me, if you will allow me to. His music comforts me and I would like to give it to you for comfort.

LeTourneau University is continuing to pray as am I.

In Christ,
Amy

 
At 4:48 PM , Blogger Sun said...

This comment has been removed by the author.

 
At 4:50 PM , Anonymous Jule White said...

Trish ~ You have such a beautiful heart and that is all that matters. I know that Dave thinks that too. You know that precious Ashley loves you just the way you are. I can't wait until we hear about the day that you, Ash and Allie are having a girls day out to get your nails and toes done.

I am praying today that her fluid is down and the drains are on their way out! Praying for comfort and rest for you both. Praying that tomorrow won't feel as trying! You are doing an amazing job. Love on that sweet baby girl from me.

Love, Jule White

 
At 5:06 PM , Blogger Amy T said...

Proud of you girl! You hold it together better than I could and I know Dave sees the beautiful woman he loves every time he sees you. I'm so glad the camera is up and running! What a wonderful blessing that will be for your whole family! Praying Ashley will begin to feel better soon!

 
At 5:15 PM , Anonymous Nan said...

Hi baby girl, I feel like a Nan today, and proud to be one. We all miss you so much and the love in our hearts hurt because precious pieces are missing from the home. The Lord has blessed each of us with special little blessings today that made our day easier. Dave enjoyed a quite, relaxed and healthy lunch with fish and smelly grilled vegetables and red beans and rice. Allie looked for new shoes after school but decided to shop with you when she gets there. Wwe bought her two new tooth brushes and tooth paste just for her, she was so happy! Blake has turned into a reading factory and can't get enough minutes in the day to be in his books. Mommie is so thankful they are getting to come hug you and Ashley in person. Allie really needs to touch your face and sit on your lap cuddling in your arms. Blake has so many sports plays to tell you about. You have some of the most incredible children I have ever known and thats not from a predjudice Nan, just another woman. How they do so well in school and relate with others as they endure this special kind of life simply puts me in awe! My blessings on this day have been many! I had to call the Ford garage because nothing I bought would put my front tag on my bumpber and they put it on free before another police car stops me. I finally got my seat belt lowered and off of my throat, I knew it was going to hang this short fat lady someday. I thought my transmission was getting bad and it turned out to be something simple that cost less than twenty-five dollars. My roof still leaks on my home but I know God is going to solve that promblem also. These may be very small blessings to some but for me, God out did Him self today. I can't wait to hold Ash once again so hurry, pack and hit the road and come HOME!!!Allie and Blake just came into the room and said to tell you they love you and can't wait to see you. Love you both greatly Nan

 
At 5:25 PM , Anonymous Anonymous said...

you are one amazing mom. once you are through all of this your little girl will thank you for all you have done. I will continue to pray for your family, and complete healing of your beautiful daughter.

moriah freeman
from PA

 
At 5:46 PM , Blogger Barbie@ Mamaology said...

I'm sorry today was hard!

I am still praying for you and little Ashley!

 
At 9:00 PM , Blogger Sunny Day Tag Girl said...

You were cracking me up! I could see myself thinking the same stuff. Then I remembered a day with my hubby. We were headed out somewhere and in a hurry, I had changed clothes but not had a chance to look in the mirror. I had looked at my husband SEVERAL times and was having a conversation with him when I looked in the car mirror. I had HUGE black smudges under my eyes. I looked at him in horror and he said "What??" I said look at my eyes and he said "what???" He really didn't see anything. As women I think we are so much more critical of ourselves and what we look like, I think most of our hubbies don't even notice the small stuff, they just love us and see the whole person not the smudges under our eyes or color of our roots. I bet Dave is just so glad to be looking at you, he doesn't even see all those things.

Hang in there Trish, you are doing an AWESOME job!!
Kori

 

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