Ashley's Story

She will leave fingerprints all over your heart


Date Night?

It's 3:15 a.m. and Dave and I just walked in the door. He looked at me and said, "Do you think this would be considered "date night"? I think the last time we were up hanging out together at this time in the morning we must been having more fun than we are now."

All I could do was smile and say, "It wasn't so bad."

"The painting was pretty bad(he REALLY hates painting), but the rest was alright."

It really was kind of like "date night" good music, good conversation, good food and drinks(if you consider Sonic Route 44's and a carton of Whoppers good food and drink=), and good company. I really did enjoy spending the evening with him. Even if we were working. I like hanging out with Dave. He's my best friend. Always has been and always will be. We laughed a lot, talked about some of our favorite memories of the children, and shared our most frightening moments of our last 17 years with each other. Mine? Childbirth, multiply that by 2, the night we handed Ash to her transplant surgeon, and the evening she coded. His? The three times I was forced to call him from 700 miles away and let him know that they were telling me if he wanted a chance to tell Ashley Kate good bye that he needed to be there NOW. Wow! Some pretty intense conversation with paint brush in hands.

After we painted we started moving a few of the larger pieces of furniture. We aren't even close to being done, but that file cabinet almost did me in! As we moved the hundreds of files from the back room to the new shelves I was in awe at how God has taken care of us over the last 11 years. He took a young doctor, fresh out of college, placed him in an office space and allowed him to help person after person after person. We started with 0 patients. None. Not even one that morning we first opened. In the last eleven years He has brought us a family that continues to grow and grow and grow. Our patients are family. They love us, we love them. They know our children, pray for our sweet Ashley, and we pray for them and the needs they bring to us. Dave LOVES his job, his staff, and his practice family. God has been so very good to us. So good. I felt so very blessed as we passed stacks of files between each other. I shared my thoughts with Dave and he shared with me how very humbled he felt the day he moved all those files to the back room to prepare for the remodel. He was humbled that each of those files represented a person who trusted him. It is truly incredible.

Our new office space is BEAUTIFUL. Its going to be one of the longest weekends of our lives as we finish cleaning, moving, and organizing so that we can open Monday morning, but it is SO exciting. I'm not sure that I'll be moving too quickly at basketball practice in the morning, and I'm not even sure I'll have the ability to walk into the tournament Monday morning. One thing I do know though is that as tired as I am tonight I'm thanking the Father for the time He blessed Dave and I with tonight and for the time He is giving us the rest of the weekend to be together. Its hard work, but Dave has a way of making me laugh so hard that I forget how hard we are working.

Date night? Yeah, one of the best we've had in a long, long time.

Now I'm off to jump in the shower. I'm covered from head to toe in paint and sheet rock dust! Not quite the outfit I would have chosen to wear on "date night".


Giving Her Time

Ash is making a turn around. We are SO, SO, thankful to see her smile again. Still I'm giving her some time. She's not 100% and I'm in no hurry to push her. I just want to give her time to rest, recover, and feel like her old self again. So this week she is going to be allowed to do nothing except be 4 years old. No classes, no PT, ST, OT, no feeding therapies, no nothing. Just sleep in, play all day, and hang out with mommy. More than anything I think she needs time to feel good and pushing her to do things, follow instructions, complete tasks, walk, stand, etc. is just too much for her this week. She's a little week from being down all last week, still has a yucky cough and not much of an appetite. So I made an executive decision and I'm canceling her entire week. She can work on catching up with the rest of the 4 year old world next week. I've been told more than once that "this kid has more therapists than any other kid they've ever seen!" I tend to agree and so exposing her to everyone this week while her system is recovering doesn't appeal to me that much.

I would SO love to give myself the week off too, but lets face it. My mom isn't around to cancel things for me and I'm a little to old to pass for 4. So...I'll keep plugging along. Tonight my team of girls play in Mt. Pleasant so Allie and I will be traveling over this afternoon. Tomorrow and Wednesday we have practice. Thursday we play against the only team who has beaten us this season and I'd really like to win against them this time. Friday we are HOPING and PRAYING we get to move back into our office since the builders didn't finish last week either. 2weeks behind and now we are stretching into the 3rd. Its so frustrating, but the office is AMAZING and so BEAUTIFUL! So we can't really get too upset. This weekend we worked on the batting cage. Its a beast! We were able to get 11 of the 17 poles set. We had twelve and then Dave said to me, "Why don't you step to the other side while I finish this one up. I'm not comfortable with you still standing underneath it. " 5 seconds later the 100lb 19ft. pole came falling to the ground exactly where I was standing. A bolt had broken while he was tightening it. Thankfully he was standing on the fence line when it happened because the weight of the pole sliced through the metal ladder he had been on! Talk about dangerous! This is crazy! Anyway, we survived and we are close to being about 1/2 way done. Maybe next weekend Blake will be hitting in it? I sure hope so.

Well,the fussy four year old has made her way down the hall and is knocking on the door needing in. I'm so glad to see her moving about this morning. She didn't budge an inch for a whole week and now she's branching out again. God was gracious to us last week and brought her through a very scary time. She avoided a hospital admission and we are more than grateful to not have had to put her through any of that. I think she's going to recover just fine, its just taking a little time. So...I'm giving it to her. Thank you so very much for your prayers for her over the past week. Well, really over the past 4 years. I look at her face each morning and I know He's been listening and working in her life because of all the many prayers prayed over her. I can never say thank you enough. Have a great day and God bless. Trish


Its 4a.m...

and the laundry is going. Yes, the laundry.

You have no idea HOW FAR behind I am this week. Sunday through Wednesday we didn't sleep. We used every single towel in the house(we have 4 bathrooms each with their own towels, plus a stack of beach towels as tall as Ashley Kate for the pool) and every single sheet and blanket in Ashley's linen stacks(try to imagine 4 years of hospitalizations and how that stack grew out of control because a soft, pretty blanket was about all the comfort I could give to my girl while she was "out" on the vent) and went through one of Ashley's closets just trying to keep her clothed in something during all the vomiting. Needless to say the laundry room is KNEE deep with all the "extras" used to get us through this week and with my lack of sleep I've had a lack of motivation each morning.

Last night I did sleep a few hours and I am assuming those hours must have recharged me because I've been up since 3 doing laundry and cleaning the family room. When I look at the clock I think that I must be losing my mind because if she's sleeping then I should be too, but I'm wide awake.

Ash is still sickly. Better I think, but still not well. In the beginning of the week her symptoms had me reeling. I'm talking reeling with the thoughts of what they were all pointing too, but mid week those symptoms all ceased and things changed. At this point we have a very wet cough in her chest and a horrible snot situation. No fevers(thank God she's had none through all of this). The vomiting has stopped. The bowel seems to be functioning normally from what I can tell. She is no longer signing to us that she is in pain. She's not smiley. Not feeling very good, but definitely feeling better. I mean she's at the point that she can sleep(it may be in our bed, but at least she's sleeping) and that is improvement. Her energy levels are very low. She's too sickly to feel like standing or moving around, but she's not screaming, not crying, and not vomiting anymore. That tells me its better.

Whats wrong with her? I wish I knew. I am now leaning hard toward the notion that she got a stomach bug and her "little cold from before Christmas" has worsened through the process. That's what I'm thinking? hoping? just because the "alarming" symptoms have ceased and did not get worse. She seems to be well hydrated. Seems to be improving each day. Seems to be getting closer to turning a corner. She is not twinkly, smiley, playful, or normal by any means, but I'm hoping we are getting closer to that. At this point I'm not planning to have her classes and therapies re started next week unless she makes huge improvements over the weekend. Its so dangerous to expose her to that many people when she's already weak with "whatever" it is that she's got.

In other news, I managed to lock my only set of keys inside my car last night as I was running from basketball games(my girls won again=)and I'm SO proud of this team) to the office. Not sure what I'm going to do about that today, but at least for the first half of the day I'm stuck. Since I can't get anywhere and the laundry isn't going anywhere either I think I'll work on it until I run out of supplies. If the floors get installed at the office today(it was supposed to be finished last Friday but as of last night I don't even see it being finished by NEXT Friday) then we will at least move furniture back into the building this weekend. We were planning on opening in there Monday morning, but there is no bathroom, no counter tops, no ceiling, no floors, and a multitude of other things either. They say they will be finished this weekend, but I just don't think so. I hope so, but honestly don't think so. I guess we will be putting up Blake's batting cage instead of setting up the office. That should make him smile.

Well, I guess I've rambled long enough between loads and now its time to go switch them. Hoping this head start this morning pays off for me later today with some extra time to enjoy my kids. They've been running in lots of different directions this week and I'm missing them. Have a blessed day and thank you so very much for praying for Ashley Kate. I do hope the worst is behind us.


Rub a dub dub...

...three girls taking cover in the tub!

This is nuts. Honestly, it is. My girls and I are sitting in Allie's bathtub, blogging, giggling, and taking cover from looming rotation and possible tornados overhead. Allie and I grimace and take cover each time Ash coughs knowing that she ALWAYS coughs prior to vomiting. Please, please don't throw up on us!

The guys aren't here to help us. I can't read a map to save my life and in this case it might be necessary to have those map reading skills to save our lives and hence my lack of skill I've got my girls huddle in the tub.

This is what I would call a "memory making moment" that we probably will laugh about the night before Allie's college graduation or wedding. I can see it now. I'll probably be just as sleep deprived at that moment as I am now causing all things to make me laugh hysterically like the weather man who is yelling down the hall way at us to "take cover". So whats a mom to do? We have officially taken cover.

I just wish the guys were here with us to give us some real direction cause as far as I'm concerned when the word Longview on the map turns red we just might be in the tornado path.

The weather man just announced "signs or rotation in north west Longview" for about the 15th time.

Allie's trying to take a nap, Ashley is waving and signing "get out, go bye bye", and my tummy is growling telling me its time for dinner. What a life!

Is it really morning?

I couldn't be happier to have last night behind us. It was by far the most miserable night in more months than I can remember. Ashley's bowel locked up around 10pm and my panic level rose by the hour. I prayed and prayed and prayed and begged for it to open back up. She was miserable. I can't even describe it. At one point I had to get Dave up and ask for help. She was screaming, clawing, fighting and I was crying and crying and crying. I had seen this happen to her before and I knew that it could open back up, but I've also been standing by her in a hospital bed when it didn't. I was so very scared.

Her tummy was hard and tight, rumbling and rolling, her stoma was bulging and I knew there was an intense amount of pressure building and the longer she was locked down the more miserable she would be. It was not fun.

But... this morning I walked into a beautiful sight. Stool. I know that may not sound beautiful, but when you have memories of what it can be like when the bowel stalls or gets an "ilius" you WANT to see free flowing stool. So I was so grateful, so incredibly grateful that the Lord heard my cries last night and that her bowel was flowing once again. She was peacefully sleeping and stayed that way as I cleaned her and her crib up. Once she opened her eyes I could see a small sparkle and the sight of that blessed my heart. She looks SO MUCH better this morning. Still not well, but not in pain. Its the knowing she's uncomfortable part that kills me. I hate to see her hurting.

The other good news is that she hasn't v______( i hesitate to even put it out there) yet this morning. Could this be the day that her little body starts to kick this thing? Please let this be the turn around day. Please.

It is no secret that I'm on edge this week over Ash. We all are. The kids are nervous. I'm nervous. Dave refuses to worry and I so wish I were more like him in that way. Still I'm trying to keep up with my responsibilities and commitments outside of the house. Again I will be coaching basketball practice today, tomorrow I will attend part of Blake's game and then head over to our home gym to coach my team against a tough opponent. Friday we have to have our things moved out of the temporary space we are operating in and moved back in to an unfinished office space. We will be working to get it functional for our patients while working around the crews and try to get things back to normal there. We also have a commitment to work at our schools annual fundraiser on Friday evening. I don't see that we have any other option but to be there and do what we committed to a year ago. I still don't have a sitter confirmed to sit with Ash for that event. Knowing she's sick makes me nervous leaving the older kids in charge of her. Life is busy and we like it that way. I'm just trying to keep my sleepy self going this week until Ash gets through the roughest days of this setback and I can find a moment or two to sleep.

Thank you so much for your prayers for Ashley Kate. As always your words of encouragement help me to keep going.

Emotions run high...

when your going on the third night of NO sleep. I'm a mess. Tears burning and stinging my eyes for no other reason except that my sleepy mind is in worry over drive. Will it ever "just be a cold" or "just an upset tummy" or "just anything"? Why must it automatically be "the" bowel or "the liver" or "the transplant"? I WANT it to be just tummy aches. PLEASE!

I'm so tired. So tired. I'm sitting here listening to her fuss and wishing there was something I could do to just help her sleep through it. I've tried everything I know and nothing works. She doesn't want me to hold her. She's pulled off countless ostomy bags and now needs another. She has socks covering her little hands and pulled all the way up to her elbows to try and keep her from clawing herself.

She's not vomiting at the moment, but her tummy is cramping and she's so miserable.

My stomach is in knots. I'm so worried. So upset.

I was sitting in the bleachers at the game tonight and a man turned around and said to me, "Are you the lady with a child who had some organs transplanted?"

"Uh, yes. Thats me."

"So I guess God just must give you the grace that you need in those times that you need it, huh?"

I just sat there. It took me a moment to answer him and all I could muster was this:

"Yeah, I guess He does."

Tonight, I am in desperate need of that grace. I need to feel it wash over me and my baby and assure me that this too is happening for a reason. I need it to remind me that He knows and that He allows illness to come to our way. To children. I don't understand it, but I know He's not disconnected. I don't get it when I hear of sweet babies leaving their mommies arms way too soon. I can hardly believe the suffering that goes on in this world in the lives of the tiniest. I just don't get it. I'll never get it this side of heaven, but He does. He is good. He is gracious. He does bring us through. Even through the long nights of worry as you watch your daughter struggle and you wish for nothing else but sleep. For her and for you.

Tomorrow is coming soon, and things will be better once the night is behind us.


I thought...

she was perking up. Yesterday started a little rough, then improved, then by bed time...went down hill.

As of yesterday afternoon she was scooting down the halls, unhooking feeding pumps, and causing her big brother and big sister all kinds of trouble as I attempted to get a quick nap. Lets just say the nap never happened because the littlest one of our crew is nothing but ornery! It was ok with me though because I really thought the worst was behind us. There was no vomiting, no fever, just a runny nose and a consistent little cough. Still we saw lots of smiles. I didn't even have to change her clothes more than once and after the pile of p.j.s she had gone through during the night I expected to be changing her all day long.

Then... last night it went down hill again. She vomited all night long. I have no idea where it is coming from. I'm too afraid to stop running feedings. She looks ok, she just can't keep anything down once it starts. I mean, she went from not one episode ALL DAY LONG yesterday to a night full of dirty sheets, blankets, p.j., towels, etc. You name it and I grabbed it last night in an attempt to clean it all up. Her nursery stinks so bad this morning. I will be doing laundry non stop. She needs a bath, but at this point she would have to live in the bath to keep clean. I'm exhausted. She's exhausted. Its been another LONG night. I ran down the hall more times than I can count through the night. I tried her in my bed, but she was too uncomfortable. She wanted her crib and so I kept the hall way warm as I would take off running at the first sounds of her stirring.

I just want this to stop. I'm praying its just a stomach bug, but then again "just a stomach bug" can rev up that immune system and cause big problems for transplanted organs. I HATE it when she's sick. Nothing is safe. Nothing feels right. Nothing.

Still no fever. No high stool output. A pink, moist stoma, and soft tummy. Those things tell me to calm down. Its ok. The grafts are safe. Right?

I've got basketball this afternoon, and Blake has hitting lessons tonight. Grandma will be sitting with Ash cleaning up after her. Its going to be a long day on little to no sleep. Dave has so much going on at work with the remodeling, the plan to move back in to the office this weekend and his regular schedule that he had to get some sleep. He moved out of our room by 10:00 last night to find a quiet place to sleep.

I think I'm going to stop her formula and replace it with a fluid bolus of 1/2 normal. I remember doing that once before when they saw her getting a little dry. Maybe the break from formula will give her tummy a chance to rest, but the fluid will allow her to stay hydrated? Yeah, thats what I think I'll do. I'm not worried about calories. She can go a few hours without them. I'm really hoping today settles down like it did yesterday. I would really like for her to at least get a break for the afternoon. So far this morning she's had 4 episodes of vomiting. :(


Is it Naptime Yet?

Its 8am and I'm ready for a nap. Last night was the LONGEST night I've had in many, many months. I almost forgot what it felt like to sit up and watch her be sick through the night. Guess I needed a refresher course.

After jumping up and running down the hall, in the dark, a dozen times in the first 45 minutes I decided we might be better off bringing Ashley Kate into our room. Problem being...she's NOT LITTLE anymore. Her legs are LONG and STRONG! She managed to kick and push and take control of the entire bed the entire night. I started with a few inches of the mattress and ended up in the chair, then the floor, then once she finally fell out about 6am I tiptoed into Allie's room, climbed in her bed and snuggled in for about 30 minutes. Then Dave's alarm went off and he came to find me so I could sit with Ash while he got in the shower.

It was a long night. Every cough, every whimper, every gurgle of her tummy had me jumping. I can't sleep when she's sick. I'm so afraid of her vomiting in her sleep and then aspirating that I can't rest. She's been there before and its not fun. One of the most frightening times of her life.

So today I'm hoping for normal. The kids are out of school. I've had to cancel Ash's therapy. I just hope for her to begin feeling better and start acting like herself again. I'm not afraid to admit how scared I become when she's not feeling well. I don't want to feel that way today. Yesterday was long enough for me. I just want her to feel better and for me to feel like nothings wrong.

I'm hanging on till nap time hits the house and then I'm going to make a palet next to Ash and join her for as long as her little body feels like sleeping.


On Alert

Not sure what is going on with our little one, but this afternoon she began vomiting. As always it puts us on high alert and nothing in our world seems right when she starts feeling bad. I'm not sure what it is, why its happening, or how long its going to last. All I know is I'm watching her closely and praying it stops. Soon.

She had labs drawn last Friday. We never heard a word. From anyone. That's a good thing. No news is good news. She's been happy and playful. Nothing more than a little cough and stuffy nose that she's had since before Christmas. I thought she might have gotten choked on some mucus this afternoon, but its continued to happen several times since the first episode leading me to believe its not from her cold. She's finally fallen asleep. I'm continuing to run her feedings not wanting to risk dehydration with the fluid losses from all the vomiting. Its kind of a catch 22. More fluid in the stomach leads to more vomiting, but no fluids running leads to dehydration. I just want it to stop and go away.

Her stool output is normal. That's a good sign. If that was off in combination with the vomiting I would be in panic mode. Since that is normal and she's not feverish then I'm trying to stay calm. Just on alert.

Its been a while since Ash has been sick and I like it that way. She hasn't left the house in weeks. We don't take her anywhere at this time since its cold and flu season. I take her for rides in the car just to let her out of the house, but other than her car seat she doesn't get out at all(last week I realized it had been 11 days since she last left. It breaks my heart for her, but the alternatives are too risky). She sits by the door begging to play outside, but the weather hasn't cooperated much lately. I don't think she has picked up anything from anyone. None of us are sick. Although I know its possible for us to carry something that we are strong enough to fight off and she may not be.

I'm praying this stuff stops and that when she wakes up its all going to be ok. Thats what I'm


One Step Closer

Over the last 6 months I have been asked more often than any other question, "What ever happened with Ashley's Make a Wish?"

Well, I can officially give an answer other than "I'm not sure".

In June she was interviewed for a wish, in July we received the phone call to share with us that her wish had been approved and then we didn't hear anything again for months and months which is why I could never really answer your questions. The week before Christmas we were contacted and told they were ready to grant Ashley's wish.

So the artist we chose(she's amazing if you ever need one) came in and painted the walls in Ashley's therapy room. Her work is beautiful and it is exactly what I asked her to do. She transformed the room and when we step inside of there with Ashley Kate it feels like she is actually outside rather than in. Last week Make a wish stopped by to see the paintings and asked us to sign off that her wish had been granted.

So we are one step closer to making Ash's wish become a reality. As time and money permits Dave and I will finish granting her wish. At this time it is a large, open room with beautifully painted walls. Once we are finished it will have become what we had hoped for Ash. A place to forget the hospital stays, a place to bring smiles to her face, a place where she can lay under a starry sky, a place where she can swing from the branches of an apple tree, a place where she can reach all of the books from her very own library, a place where she can pull up on her own and begin to walk, a place where she can learn, and play, and grow.

Make a Wish brought us one step closer and for that we are SO thankful. So if you ever wonder whatever happened to Ashley Kate's Make a wish, you have your answer. Her play/therapy room is a work in progress, and someday it will all be complete. My hope is to find the resources to finish it up in time for her 5th birthday.

Every other family that I know personally( and many, many others that I do not) wish for a trip to Disney World. I suppose we could have wished for the same thing. Dave and I had to speak for Ashley Kate since she can't speak for herself and when making her wish we tried to think off all the things she loved. We were asked to dream big for her and that is what we did. That list included apple trees, stars, swings, books, clouds, birds, etc. When coming up with her wish we wanted to bless her with something that ordinarily we would not be able to give her. Disney World is something we had already done with her and something we could always do again someday in the future. Although we love the painted walls in her play room I think my advice to other families would be to take that trip. Make some memories with your family.

We would like to say thank you to the Make a Wish foundation for bringing us one step closer to making Ashley Kate's wish come true. We are grateful.

And that is the answer to the question, "Whatever happened to Ashley's Make a wish".



Tonight I looked at Ashley Kate and asked, "Can mommy hold you?" To which she quickly answered, "NO, Daddy" She's so cute and so adamant about it with her signs that I can't even get my feelings hurt about it.

She loves him. Not just loves him, but LOVES him. He can't walk through the room without her falling apart. She NEEDS his undivided attention. It breaks his heart every day as he leaves for work to see her cry the way she does. At the same time though it must feel awfully good to know you are loved that much.

I tell him all the time that she doesn't love me like that. He tells me its not true, but honestly it is. I mean she loves her mommy, but it can't even come close to the love she has for Dave. You may be doubting what I say, but trust me if you ever witness the two of them together then you'll get it. She lights up the moment he walks by. She smiles and applauds and her eyes twinkle with excitement. It doesn't matter what he's doing she's happy doing it with him. The girl even watches Myth Busters with him. That is LOVE! Allie and I HATE that show, but not Ashley Kate. She snuggles in close to her daddy the moment it comes on. Not only does this make her dad smile, but her big brother too. She's a girl after his own heart.

What is it about daddy's? I remember a little boy who would sit at the end of the sidewalk EVERY SINGLE DAY waiting for his dad to come around the corner and pull into the drive. I remember a tiny two year old girl who would pull up her chair and press her nose against the window staring out it hoping for the first glimpse of his car in the driveway. Then she would squeal with delight as he turned the door knob and stepped into the house. Now my four year old beauty signs for "daddy" ALL DAY LONG and saves her most precious smiles and giggles for that man.

I'm not jealous. I'm truly not. Nothing makes me love him more than KNOWING what an amazing dad he is. He's always been good at it, and the way they love him is proof of that. It blesses my heart to have him in their lives and mine.

I'm so, so touched to know how very much she loves her daddy and how very much he loves her. What a lucky guy. What a lucky little girl!

Sleeping Beauty

Its 9:30 and our baby is sleeping. She LOVES Wednesdays. Its her slow day, and today its her "no" day. No classes, no therapies, no schedule, no anything that must draw her out of her crib. So my little beauty happens to be a sleeping beauty this morning. Still snuggled warm underneath the quilts, little hands tucked underneath her cheek, and long legs all drawn up to her chest. She's so beautiful. So incredibly beautiful. I love to stare into her face as she sleeps. Those long lashes, rosy cheeks, pink lips. I could eat her up she looks so very sweet.

In store for today are loads and loads of laundry, and an attempt to gain control of her ever cluttering closet. For some reason I just cannot keep the boxes of supplies organized. I feel like I'm reorganizing that silly closet every month. So this morning while she rests I'm going to sneak into that closet and work just as long as I can. I've got boxes of supplies piled up in the dining room just waiting for me to make a space for them along with the countless others in her closet. Following my chores for the day I'll be coaching practice at the gym for a couple of hours this afternoon and then figuring out what I want to feed Blake and all his friends before church tonight. Nothing has come to mind so far. Hopefully for their sakes something will come to me.

I suppose its time to get started. Although I'd much rather sit her snuggled up under this blanket for the remainder of the morning! Just wanted say good morning. Have a blessed day.



"Yeah, I know I did it"

For the first time in her whole 4 years, 5 months, and 7 days Ashley Kate STACKED 2 blocks on top of each other! She did it. She was asked to put them on top of each other and although she did not want to do it once she heard that if she would they would be all finished working she begrudgingly did it. I KNEW she understood. I KNEW she COULD do it if SHE wanted to. I just knew it. After years and years of "failed" and "unable to complete task" marks on her evaluation she showed that yes she can stack blocks she just doesn't see the need to stack blocks. I could have cried. I fought back the tears and whispered, "That is huge. So huge." Then the smile that had appeared on my heart appeared across my face as well.

This past Friday she amazed us all as she picked up marbles and put them IN a bottle. Again, we have seen the marks on evaluations for years that told us that she couldn't do this. For Dave and I to sit back and watch her do it so easily was more than amazing. The JOY in our hearts over watching her accomplish such a simple task! She can use a pincer grasp. We always knew she could. She just hadn't shown any of her therapists before. But on this day she was showing off and she put those marbles in that bottle over and over and over again. Putting things "in" has never been high on her priority list. Taking them out? Has always been fun.

We are seeing progress. The hours and hours of therapy are worth it. I"m not sure that stacking blocks and picking up marbles are really that important in life, but I do know that listening to instruction and following it IS. I do know that comprehension and understanding ARE.

"Whats the big deal?"

Our sweet Ashley is getting there. She is. Slow and steady wins the race. Right? Again last week our therapist(Ms. Sue) reminded me that if she's walking and talking and eating at 7 or at 10 or at 15 is it going to matter to me that she didn't do it at 4? NO, it won't matter one single bit. I'm so proud of this little girl. I'm so grateful for her. I'm so honored to be known as her mom. IN HIS TIME.


Father, thank you for my daughter. For her life, for her stability, for her growth. Thank you for blessing our home with her. Thank you for the time you have gifted us with. I know that without YOU she would not be here, would not be with us, would not be ours. All I know to say to you is Thank you.



Its a chilly day here in Texas. I'm mean REALLY chilly! So chilly in fact that I had to start my own fire in the fire place just to function and if you know anything about our house you would know I'm not the one who starts our fires. Dave? a pro at it. Blake? falling into a close second behind his dad. Allie? Love to start and tend to the fire place. Ashley? Of course she's not allowed to play with matches or starter logs or pokers and the like, but she sure does enjoy the warm glow( and I sure do enjoy watching the glow reflected in her eyes.) Anyway, I did attempt to start my own fire and it was going ok for a while. That is until I got completely distracted during Ash's first hour of therapy and forgot to tend to it. Now we sit here shivering as we wait for Dave to show up and build us a real fire.

So on this chilly day in Texas I have NO plans. I LOVE those kind of days! No where I have to go. Nothing I HAVE to do(other than the usual put away toy kind of things, watch Cars and Nemo hundreds of times in a row with the gherkin, and fold laundry).

Ash does have three hours of therapy today. Not sure how that happened, but it did. Somehow we had lots of reschedules this week and they landed on Friday which is usually an almost empty day. Oh well, such is her life. Therapy, therapy, therapy. To add to her schedule of nine hours a week we got a card for a new speech and feeding therapist here in town and think we are going to take the plunge. One more couldn't hurt? Right? A nice even 10 hours a week should round out her work week. Why not? To date we haven't found anyone who has made much progress with Ash in the areas of speech or feeding. Oh the new therapist can also sign which makes her all the more appealing to us.

We are leaning hard toward the idea of having her receive her education along the line of deaf education. We watched a documentary a few weeks ago and the results were amazing! We of course are not thinking she'll never speak. We want to give her both. Verbal teaching along with sign. At this time she is four years old and does not speak. Her only way of communicating with others is through sign. This is not a novel idea for us. We had started our fight for it when she first began in the Longview school system only to be told she didn't qualify for the teacher who was fluent in ASL because she was a hearing child. Again we are being told the same things in the Pine Tree district, but are looking for solutions and ways around that. We FIRMLY believe that Ashley's education needs to be taught both verbally and in sign. I know she would progress and benefit greatly from seeing her main language (which happens to be ASL) used fluently while being instructed in her school work and play. The tools are in the community and in the school system they are just being shut off to us at this time. It is very frustrating to know there is something available that would benefit and yet not be able to access it. We are not giving up though. Actually we are just beginning. Our team of teachers and therapists haven't given up either. My request was that they help us find a way into the system or solutions to get around this problem. Ashley's teachers NEED to be fluent in sign regardless of whether or not she is a hearing child.

Wow, what a tangent! My intent was to blog about the chilly weather and my opportunity to stay inside with our little one today. OH well, sometimes this blog has a life of its own.

So again I say, I have the opportunity to NOT leave my house today, to spend the day with one of my very favorite people in this world(Ashley Kate=), and enjoy every minute of it. I suppose I'll push play to start Cars one more time and switch the laundry. Then I'm off to put a pot of yummy soup on the stove for lunch. Yeah, me. Its chilly in Texas and I'm loving it. Have a blessed day.

By the way my girls won last night 22-16. I'm really, really proud of this team and how very hard they work! Way to go girls. You make me smile!


On the Brain

You know you've got it bad when you can't sleep at night for images of defense running through your head. I have got a serious case of basketball on my brain and am having a hard time turning my mind off each night as I attempt to find sleep.

Its happened to me before. In years past. Like...many...years...past when I played. I just never thought I'd be experiencing it again. My stomach is full of butterflies as I anticipate today's game. Honestly, its ridiculous. Funny how a game such as basketball can reduce me to feeling like a kid again.

Allie and I are headed over to Henderson to play this afternoon. I have no idea what to expect. Just hoping that my girls are ready to play. Blake has a game here at home around the same time. For the first time in his life no one will be there to watch him play. I think that is adding to my "sick at my stomach feelings" today. He assures me its "no big deal" and then grins as he adds, "Its probably going to start happening a lot since Allie's all grown up and just as busy as I am." Well, I'm doing my best to not let it happen a lot. Dave's working late, grandma is sitting with Ash and I'm coaching, so that leaves Blake on his own at the gym tonight. It makes me feel like a bad parent. It really does. I hate not being there for him and hate not being able to watch him play. I just can't do anything about it.

So other than Ash's classes and therapies, an office remodel and all the chaos that goes along with being displaced for a month or so, we've got basketball on our brains for the next few weeks as we anticipate the beginning of new baseball and soccer seasons that will be here before we know it. Not much else happening as our new year begins. Just the same old stuff that we love.

Hope your new year is off to a good start.



I'm still here. Just processing a lot lately. Many, many topics come to mind that I could write about, but most days I find myself processing things in our world and trying to figure out if it will ever be any different.

Things like:

Junior sized diapers. There are no words to even describe how it felt the day they were delivered.

Ostomy bags. Daily. Sometimes multiple times a day. At this point I feel it would merely be a cosmetic procedure to have a take down done on Ashley Kate and that's not a good enough reason to take the risks that are associated with the operation. At least not in my mind. She's not aware that she's pottying differently than the normal four year old and so it doesn't bother her. She's not able to understand or comprehend potty training at this point in her life so the idea of her needing to be changed constantly at 40lbs doesn't appeal to me either. She doesn't walk or run and hasn't the ability to be in athletics so I'm thinking "is it worth it?" So like I said, I'm processing....ostomy bags...forever? I really don't know.j

Feeding pumps and mic-key buttons. Even after four years the sight of an opening in her abdomen gushing fluid brings me to my knees. It is not normal. It is not natural. It just isn't. She lost her button today and I had to replace it. I though to myself, "Is this forever? Will I always be "bothered" by the knowledge that she has a whole in her abdomen that shouldn't be there?" Just processing why I haven't been able to get over becoming dizzy as I replace that button. I have no idea how to teach Ashley to bite or chew. So far I've had no luck with therapists showing her how either. I wonder if she'll ever get off that feeding pump.

Lab draws. Really struggling with this one. No surprise there. The whole jab my kid in the arm with a needle has NEVER appealed to me. Something about those protective, momma bear instincts kicking in and making me want to inflict pain on the one sticking my baby. Processing the thought of this being her normal for her entire life. I wonder what happens if you just stop getting them drawn one day. I mean, can you ever just say "enough is enough" or is that not acceptable? Any transplant families out there who have gotten to the point that you no longer have to have those lab draws? or is it that just out of the question?

Silence. Hard to swallow as I process the silence. I find myself making conversation with Ash as she plays just to get away from the silence of her world. I talk to her as if she could open up and converse right back at any given moment. I want so desperately to hear what is on her mind. I just want to hear her say, "Mommy help me with this or please do that." She can sign it, she just can't say it.

Just a glimpse of what I'm working through at this moment as I process the thoughts that flood my heart and work my way through them. At the end of the day as I kiss her tiny forehead and tell her goodnight NONE of these things really matter. Just the smile on her face and the twinkle in her sleepy eyes. Diapers at 4 or 14? I'm just glad she's here. Ostomy bags and the daily mess? Just glad that she's here. Filling feeding bags all through the night and lugging that backpack every where we go? Again, I'm glad she's here. Lab draws? Small price to pay to have her with me. Right? The silence? Her eyes tell me all I ever need to hear. She's here, she's happy, she knows she's loved. Its all going to be ok.