Ashley's Story

She will leave fingerprints all over your heart


All Stitched Up

They surgeon just called out and let us know that he finished removing Ash's catheter and that he did have to make another incision on her left rib cage to get the cuff out. So...she's stitched up. Another incision, another scar. We've lost count of the number of scars her four year old little body wears. The stitches should be removed next Friday, except that our pediatric office isn't opened on Fridays so we will be in search of someone to remove them. It'll probably fall on the shoulder's of her daddy.

The good news is that by next Friday evening, the day of her birthday party, our Ashley should be swimming in the pool with her guests and playing on the beach under the palm trees. I'm just so excited for her. No line means we don't have to worry about little grains of sand or anything else causing an infection in her line.

I imagine Ash will sleep for most of today. She only slept from 8:30 till 11:00 last night and then was up until they gave her pre meds at 10am this morning. So with the lack of rest last night, the pre-med, and the anesthesia I expect to have a very sleepy little pickle for the day. We are hoping to be on our way home in an hour or so.

Just wanted to update you guys and let you know she's doing well. Thanks so much for your prayers. Take care. Trish


Cracking Up!

Thats what they do with each other. They can't stop laughing each evening when he comes home to play. I love this! She laughs so hard it makes us all laugh too. Oh my goodness this girl LOVES her daddy!

Something were not cracking up about... Ash goes to the OR in the morning at 6:30am. Just thinking of our 4:30 alarm clock does not have me laughing. Neither does the whole take my kid, put her to sleep with anesthesia, take her to the recovery room where she has no ability to communicate her needs to anyone back there, and then come out with bandages and stitches, but its just a necessary evil. Ashley's central lines can't just be pulled out in a clinic visit. The frailty of her venous system causes her to be scheduled in surgery to have them removed. Its going to be a short procedure but one that requires a skilled surgeon to navigate through in order for her to come out safely.

The blessing is that its being done on a Friday so Dave can go to Shreveport along with us. The other blessing is that it is being done a week before her big birthday bash so that she should be healed enough to be given the green light to go swimming. We are super excited about that.

Once we arrive home and she is resting comfortably then Dave and I will slip into full party planning mode. By sundown tomorrow we should have a fully fuctional Tiki Hut for our luau and be on our way to building the beach and planting palm trees. This is going to be SO fun!

My family begins arriving early next week and by Friday afternoon every member should be here. We are going to have the best time. Let the games begin. I have a round or two of sequence to win. Can't wait!

Hope your weekend is blessed. Take care. Trish


Ticking Away

Tick, Tock, Tick, Tock...

The days, hours, minutes, and moments of Ashley Kate's 3rd year are quietly ticking away. In less than two weeks we will be the parents of a four year old for the third time. I look at this miracle child and find myself speechless as I try and formulate what words it is my heart wants to say about this year. Once again it proved to be eventful. Not nearly as quiet and ho-hum as I would have hoped, but it is in those eventful, unpredictable days that I see the hand of God working in our lives more clearly than ever before.

So the time has come to finalize the preparations of the celebration we are throwing for her. Her birthdays are not just another day. They are milestones in our family. Huge, celebrated, appreciated milestones that we weren't sure we would ever see come to pass. This year we have chosen to throw her a Luau. Complete with sandy beach, shovel and pails, sea shell hunting, limbo dancing, tacky tourist relays, umbrella floating slushy drinks, lei's, grass skirts, coconuts, music, great food, tiki hut, the big Kahuna, and all.

As we count down the days to her party I realize that the remodeling projects I have found myself in the middle must come to an end. There is simply not enough time in my days. I am going to give myself till Friday of this week to complete our kitchen makeover and then thats it. I have decided that I do not love painting kitchen cabinets. It is not fun and even though I think the finished product is going to be amazing the whole process is exhausting and I'm not a professional painter. So at the moment I have cabinet doors laid out all over every square inch of our kitchen and absolutely not one single drawer or door in its place. When I look at it all I think I may not finish this mess by Friday, but like I said all remodeling must end at that time so that we may concentrate on things that make me smile like building tiki huts and such.

Ash is feeling really good these days. Her line infection is clearing and we have been able to keep the line while treating the infection. Our hope is to have it removed toward the end of this week so that our sweet girl might wear a swimsuit at her party and join in the pool festivities. She loves to swim and reaches for the pool each and every day. I can't wait to have her rid of the central line!

All of my family, my brother and sisters and their families, my parents, and anyone else who may claim us will be attending. We are so excited to share our new home and our miracle girl with all who attend. I think its going to be an evening of fun and laughter laced with thanksgiving. God has blessed us with another year of watching our daughter grow, laugh, play, learn, and survive. There were days that I wondered if we would ever see her fourth year, but here we are.

Tick, tock, tick, tock, only 8 more days until we can we have a four year old and then two more until her celebration. Hope your week is blessed. Our is going to be busy. Sure wish my kitchen cabinets were finished! Anybody want to hold a paintbrush today?



Ashley Kate and her...

CIRCLES!!! We ask her to "make circles" and this is what she does. Not just scribbles, but definitely round circles. She's still working on holding the pencil the right way, but the point is that she knows what a circle is, she can sign circle, point to circles, and now draw them.

Oh yes she did! and the experts tried to tell her she wasn't ready to learn her shapes and colors. Try getting this girl to do anything according to the "rules".

I am so proud!!!


Brown Bear

It was his all time favorite as a child. I've heard the story repeated time and time again how he requested it night after night during his childhood. So...we bought a copy for Blake when he was born. It never really became a favorite. Then Allison Brooke? Still not a hit. But now? With Ashley Kate he has found his soul mate or a kindred spirit so to speak. She loves it as much as he did(and probably still does). So tonight as I walked into our room guess what I found sitting in the corner in "their" chair? The two of them with her well worn copy of Brown Bear, Brown Bear.

So I sat on the edge of the bed and just listened. To his words and hers. Oh, I know she doesn't speak, but she has a language and as he read the words to her she hummed right along with the sing song pattern of the story. The twinkle in her eye was there and I think I saw it in his too. What is it about this silly little book that brought such peace to my soul tonight? I suppose its not really the book, but the two snuggled up together behind it. That's what it was. Her daddy and his little girl reading the story. The image of the two of them sitting here tonight is something I never want to forget. I can't keep from staring at the two of them even now as I type. Their beautiful brown eyes are sleepy and tired, their dark brown hair is messy after a long day , their olive skin tones match perfectly and I can't help but smile knowing that God brought them together. Not a match made in heaven but definitely a match sent from heaven.

So Brown Bear, brown bear what do you see? I see her mommy and his wife looking at me. Life is good and we are so very blessed. Goodnight my friends. Trish


When she's

...sleeping I forget about everything else and I'm overwhelmed by the tiny beauty that lays before me. She's gorgeous. She truly is. Her eyes with those long lashes closed so softly. Rosy cheeks that glow in the shadow of her nightlight. Tiny hands that hold whatever treasure she has chosen for the night. Long legs that remind me she is no longer a baby, but has become a little girl. All the struggles of her past and the disappointments of today just disappear as I breathe her in and thank the Father for handing us this child. When she's sleeping all is right in my world and in hers and for a moment or two as I stand over her crib I forget that tomorrow we will wake to tackle the many obstacles that stand before her.

I've kept myself from dreaming for my Ashley too far from today or perhaps past tomorrow. Its a part of me that I have to shut off and force myself to focus on the now. The present. The gift that this moment in time is. How I long to dream of the soccer games that she should be playing this fall as she turns four, the beginning of kindergarten next fall, slumber parties with friends, graduation, a big wedding, and all the rest. Still I want those things for my sweet girl, but learning to live within the boundaries her life is setting for us reminds me that those things may be unlikely to happen.

There is a joy and also a sadness that overwhelms my heart when closing my eyes and thinking of her tomorrows. Joy in knowing that God has done an amazing work in her life and that she is here with us. Joy that is indescribable as I hold that tiny girl on my lap. Joy that spills out of me when I see her smile or listen to her giggle. I can't hold it in. Her happiness blesses me so. Then the sadness that slips out of the corners of my eyes and rolls down my cheeks tonight when I allow myself to hurt for just a moment over all that will never be. Its not often that it comes, but every now and then the tears flow for the losses that she has experienced.

I watched Blake hold her today and help her get into trouble as they unpacked boxes of his trophies and as she dropped one on the floor I thought to myself how very wonderful it would be to watch her toddling behind us pulling one after the other out of the boxes. Even in things such as this I rejoice that she is on his lap and that he loves her so much that he is helping her be ornery, but yet I feel sad over the fact that she can't be in the middle of all of this on her own. I want so badly for her to just be almost four and underfoot as we work to unpack. On the other hand I look over at that smile and those little hands holding on to something so heavy for them and I praise God that she is still with us. Every day my heart is in the middle of this conflict.

The guilt I battle over longing for normal for her life and the gratitude I feel over her life rages on inside of my heart. My tears fall onto her blanket tonight as I wish with all that I have that she could understand that her birthday is coming. I struggle with the knowledge that she may never know that August 4th is any different than August 5th or 6th or 7th. Everyday is just as wonderful to her as the next and then I remind myself that if only we all could live life the way Ashley Kate does.

She may never understand. She may never talk. She may never walk. She may never eat. She may never do any of these things. That's reality.

The most beautiful thing about my daughter is that she doesn't care. She honestly doesn't know that she should. She just doesn't. When I stand over her crib each night and watch her sleep I wish that I didn't either.

She's here. She's happy. She's loved. She's safe. She's alive. Does anything else matter?

When she's sleeping so quietly and peacefully I allow myself to forget. She looks so "normal". So healthy. So sweet. So beautiful. My prayer for my sweet Ashley Kate is that when she closes those eyes and dreams that the boundaries that have been set around her while she's awake disappear. I pray she runs in her dreams as she does in mine.


Are we having fun yet?

We keep asking ourselves this question. I'm not so sure that we are. Well...we might be, but were just too tired to realize it. Yeah, I think that's it. We just too tired to realize how much fun were having.

So far we have had hardwood floors laid, painted the dining room, painted the family room, then sanded down the family room, then painted it again(please don't ask me why its a LONG story and one that I'm tired of being laughed at about), put in all new appliances, ripped out a wet bar and built an office space to replace it, replaced light fixtures in one, two, three, four, five rooms and still have three more to do tonight, decorated Allies' room, and the nursery, and have just started Blake's room, taken down the kitchen cabinet doors and painted them black ( we have a long way to go this week before all the cabinets are finished), stained the tile grout, and converted the pool to saltwater. The to do list before August 7th(Ashley Kate's 4th birthday celebration. Her birthday is on the 4th but our party is later that week) is still really, really long and seems impossible. Its not though. Dave and I just laughed this afternoon about how much we've done and how much more we have left to do. Nothings impossible. Not when we are willing to work as hard as we are. People think were crazy, but were not. Its going to be worth it and once our family arrives for her party and we are all settled in and celebrating we can sit back and enjoy it all. This house was so "vanilla" and we are so not! Just wait and see.

Ashley Kate looks so good. She's not near as good as she looks, but you can't convince her of that. She actually has a central line infection. Its not slowing her down though. She's on a 10 course of IV antibiotics being given round the clock every 8 hours for now and if her line cultures come back clear in 3 more days then we will continue using the line to treat the infection. If not then the line will be pulled and a peripheral IV will be started to finish the course. She is home with us and has not gone to the hospital. I got suspicious night before last and drew a blood culture. It started growing gram positive clusters this morning about 4 am. The most frustrating thing about this infection is that we were having the line removed this week. We haven't needed it for a couple of weeks and so we wanted it pulled before she got an infection. Too late. Now our plan is to finish this treatment, pull the line, and then have her all ready to swim by her party. That's the plan. We will just have to wait and see if all goes accordingly.

Well, I suppose I should get back to work. Lots and lots to do and each evening before bedtime the work shuts down and the pool opens up. I try and squeeze in as many projects as I can before the kids put their suits on and their dad slips out back to join them. Life is crazy blessed and we are so grateful for this time we have been given together. The good thing about working this hard is that sleep comes quickly and easily. No tossing or turning to be done once my head hits the pillows. Hope all is well in your homes. I'm trying hard to make this feel like ours. Not there yet, but hopefully getting closer with every passing day.


On our way HOME!

Blake, Brandon, Kyle, Chandler, and John's size 13 foot!

What a great time Blake had this week! It really was amazing to have this opportunity to spend with him. I can't remember a time when he and I had 5 days to hang together. We have laughed, and laughed, and laughed so more. So good for us!

This was Blake's 4th National Tournament appearance and we were so grateful for the invite and the opportunity to come once again. The memories made during this tournament are something really special. As you can tell by this picture the guys on the team made him feel like one of their own. I so appreciated that. After he worked out some jitters and nerves from playing with a new group of kids and a totally different style of coaching he did a pretty good job this week. Not his strongest tournament, but still some good solid baseball. The highlight of his week came on Monday as we trailed 2-1 when Blake got up and hit a hard double that scored two RBI's giving us the lead 3-2 and then the win. That was awesome and something he really needed to get past the first days play and move on into a good week. I was very proud of him for stepping into a new team, a new position, and an overall new situation. He handled himself well and as always made us proud to say that he was our son. I really love this kid!

We are going home a little earlier than we all had hoped as far as baseball goes, but not soon enough for me as far missing my girls goes. I can't wait to see their smiles and to pick up the pickle. I miss her so much. She doesn't have any interest in talking on the phone and so I've had a hard time not being able to hold her, talk to her and see her eyes twinkle. Its been easier with Al because she calls me each night and I get to visit with her about her day and hear her voice. Needless to say I am anxious to arrive home tonight.

As far as I can tell Ashley's week was almost uneventful. Almost. There was one evening when I received a call from Allie informing me that the grandma's had stepped on Ash's feeding tube and pulled out her mic-key button. That in itself is alarming enough when the baby starts screaming and fluid starts gushing out a hole in her abdomen, but its not something we haven't seen happen a time or two. The thing that had Al in a panic is that they decided to stick their finger inside the hole to keep it open until Dave could be reached to come home and replace the button. Allie was very upset and promptly called to inform me that "they don't know what they are doing!" She's been "around the block" a time or two with Ash and new it wasn't necessary to panic or to stick your finger inside the opening. Dave was in the middle of teaching a patient lecture and couldn't be reached by phone so I called his staff and shared with them that they needed to take over and send him home as soon as possible before Ash got enough of the panicked grandmothers and kicked them both out leaving only Allie to manage the situation. Not really funny at the time, but it did have her Omaha team and myself giggling the next day as they called to check on her. By the time Dave made it to the house Ash had fallen asleep(more than likely to try and forget the situation she was in) and he slipped a new button into her stoma without even waking her up. So other than that excitement I think the week went pretty smooth.

I'm looking forward to walking into her nursery this evening and seeing her eyes shine and those tiny hands reach up toward me. I'm smiling just thinking of it.

So as soon as the man who so graciously volunteered to come over and drive this RV as far as Paris, TX arrives then Blake and I will be headed toward home. We plan on trying to settle into the new house a little more and make the most out of the few weeks of summer we have left. From what I hear the salt water conversion of the pool is complete and the slide has been hooked up and its all just sitting there waiting on us to arrive. Dave has family pool/movie night planned with a 6 foot screen attached to the wall outside the game room and the projector ready to go. Can't wait to float around and enjoy my kids this weekend. Hope you guys had a great week. Talk to you soon.


These are the moments

Oh how I miss my sweet girls. Those beautiful eyes, smiles, faces. I miss them like crazy, but let me share how incredibly blessed I feel to have this time with my son. So, so blessed.

I love my son. I love everything about this young man. I could sit and talk with him about nothing special all day long and walk away with a smile on my heart knowing just exactly how special our conversation was. I treasure the time I'm given with my children. I know they are growing and changing each and every day and that each day that passes they are moving closer and closer toward adulthood.

Blake just came back from youth camp. I expected to hear story after story of all the fun and crazy things that took place. I expected him to talk my ear off. I just did. All of that has been fun to share with him. It really has, but the most amazing and unexpected thing touched his heart this past week and to listen to him share about it has blessed me more than words can tell. He has talked on and on about a mission project. A project across the world that captured his heart. He was so excited to share with me that at camp this week the kids gave of their own spending money $3000 dollars towards this project. Not only did his eyes sparkle with that piece of news ,but you should of seen them shine we he shared how high school kids are traveling there to work. I could see it brewing deep inside of him. The excitement in his eyes told me that he too would love to have that opportunity to do the same. What joy! I can hardly wait. I knew this child was amazing and I knew God had done an amazing work when creating him. I am so excited to watch as God works the details of Who He is into my son. I love this! Love, love, love this! Oh, that the Father would make a way to use my son in this very mission or perhaps another. So exciting.

Blake is not just my son. He is an amazing kid. A friend that I treasure and that I thank God for. How blessed I am in this life. Truly blessed.

Yesterday morning he leaned down to give two sleeping beauties a hug while they slept and I heard this young man whisper to his sisters, "I love you girls and I've missed you." One of them scrunched up her nose and rolled on over. The older of the two opened one eye and then smiled up at him. A moment that I will forever hold on to. These are the moments that make life so amazing. So truly amazing.

Have a blessed day. He and I are off to the first of many, many games this week. Take care my friends. Trish


Just had to share...

...that our almost 4 year old girl laid her head on my shoulder today and whispered so quietly "my ma,ma,ma,mama". PRICELESS and as I lay here tonight trying to find sleep I can't keep my heart and my lips from smiling over the memory of that moment. She's in there. I know it. She has been all along and one day our sweet girl will talk to us using her voice right along with her hands. I really believe that she will.

She's been doing lots and lots of babbling this week and making lots and lots of sounds. Most of them are just really squeaky and uncoordinated, but to our ears they are more than beautiful. Truly more. I could sit and listen to the happiness that spills from inside of her and falls off her tongue every moment for the rest of my life and NEVER EVER grow tired of those sounds. I've listened to her silence for far too long and even though to some it may sound like not much of anything, to me it is nothing short of miraculous.

Yesterday she asked or rather signed to "stand up". Not once, not twice, but three times! I'm so very proud of this baby gherkin. So very proud.

Someday. Just hold on and keep praying. This girl is going to tell her story with her own voice while standing on her own two legs. I really think she is.

What a joy it is to be her mommy and to have this front row seat. Life is blessed. Goodnight. Trish


Settling In

We are finally beginning to settle in a little. Things are finding their way out of boxes and the floors are beginning to find their way out from under the boxes. We such a long way to go, but with a freshly painted dining and family room I feel much better about things. The kitchen cabinets are next, but will have to wait another 10 days or so because Blake and I are heading out. Today!

Blake and I will be spending the next 10 days playing baseball in Tulsa, Ok and Dave and our girls are staying home. I still can't believe I'm going to do this, but I am. To have this time with my son is going to be absolutely priceless and I know we will make memories that my heart will hold on to long after he is grown and on his own. girls...are staying here. Allison has art camp next week and if you know anything about my beautiful Allie then you know its a BIG deal and not something to be traded in for 100 degree temperatures and dusty ball fields. My Ashley? For the first time in her life I will be spending more than 36 hours away from this child. My heart can hardly conceive that I will not see her for over a week, but I know the temperatures and schedule would be way too hard on her. So she's staying home with her daddy and her nan and their going to make the best of it.

How is our Ashley? Wonderful doesn't even begin to describe this child. She is so much more than wonderful. What fun her daddy and I have with her! The smile on her lips and the twinkle in her eyes bring us such joy. "She's just SO happy". I hear this every day from Dave's lips. Its true. She is just so happy. Our little one is quickly approaching 4 years old and if I concentrate on that for too long I become so overwhelmed with gratitude and amazement that tears sting my eyes. What a celebration we are planning for this child! I'm so excited and there is SO much to do before that special day. I know it will all get done. Somehow it will. I just have to take this little 10 day jaunt to Oklahoma with Blake and then I will be back in full party planning, home remodeling, house unpacking mode. I promise I will.

As for the Internet? We STILL have none. Its 10 days late and they promised to come out tomorrow to get us connected. Not so sure its going to happen, but hopefully it will.

Two more hours until Blake arrives home from church camp and we load up to leave for the tournament. I've still got lists of things to accomplish, but wanted to swing into our office to let you guys know were still here and still settling in. Hope your summers are blessed. Talk to you soon.


Exhausted but yet so Excited!

We are still here! I can't believe we have survived all that has gone on in our "homes" the last week, but we made it and our last night in our little yellow house has come and gone forever. The night before closing I slept NONE. It was so frustrating to be so tired, but yet so emotional that sleep could not be found. At the closing I began to have a little panic attack. Tears, pounding heart, sick feeling all over, and no words could be said, but then after a few moments I settled down and we proceeded to sign over our home to a very, very sweet couple who will be celebrating their first anniversary in their new little yellow house Monday evening. Life is so crazy. Who would have thought that the last four years and all of the memories and longings for home would be wrapped up in that little house. I had no idea how much it really meant to me until we let it go. BUT...

now we are in our new home and its really quite fun. Ash loves it. Her nursery is four times the size of her little "closet nursery". I kept telling Dave how big her room seems to me and he reminded me "she lived in a closet!" Her little nursery space was the absolute sweetest and so I would forget it used to be Allie's walk in closet. In our new house Ash will have 2 huge rooms. Her nursery and her surprise make a wish room. So exciting.

When I say we are in our new home I guess thats not entirely correct. I mean we, as in the people, are here, but the furniture? Well...lets just say that when your floors are being completely re done the week you move in that you kind of have to deposit all things in the garage, and when thats full then you move to the patio, and then the drive way, and the yard, and anywhere else you can find to pile them. Then when you get an unexpected call that asks if your son would like to be a guest player for a scrimmage on Thursday night, then an out of town tournament THIS weekend, and a week long tournament next week, you have to do what you have to do. Guess where we've been since Thursday evening? Yep, the ballpark. Hence all of our new neighbors are wondering if we are ever going to move INTO the house instead of around it. Priorities, right? My kids are more important to me than a put togther house. I'll have time to get it done. I mean, afterall we are having a HUGE birthday party around here in just 4 weeks. I have no choice.

So the little break from blogging came unexpectedly, but it was necessary. On top of all the craziness of our life we received a pretty scary e mail after I shared about Ashley's first temper tantrum and I kind of froze after reading it. Didn't really know where the future of this blog was going. I have had some awful things said about us before and some really unkind words received in our message section, but this one scared me pretty bad. It took me a while to recover from it and then I just did. So who ever you are, go ahead and pray to whatever god you THINK is listening to you, but I know in my heart that the one true God knows our hearts and He's not into hurting us or our children. I know that to be the truth. You can't get to our son or our daughters and for that matter you can't get to me either. He's protecting us and thats what I believe.

So here I am. Still a little out of sorts. Ashley Kate is amazing. Looks amazing. Feels amazing. Ashley loves life and brings smiles to the hearts and faces of those around her every single day. She stood up for 3 five minute periods last week and we are all so encouraged and excited by her progress. Each time her therapist comes over she looks at her and signs the words "stand up" without shedding a tear! This is HUGE. Her sign skills have taken off like never before and she's actually began to babble sounds that resemble the word "momma" more than any of us can deny. God is doing amazing works in her little body and we are so blessed to have the opportunity to watch Him work.

Love you guys. Missed you and promise to be back in full swing just as soon as we can get there. Now I have to go find the shower curtain so we can all get up and get ready. Take care. Trish