Holiday Weekend

Its here, its here, its here! I'm so happy. The "holiday weekend" that we wait on all year long has finally arrived. I'm just so excited!

Before you get all confused on me let me remind you that I choose NOT to celebrate Halloween in any way, shape, or form. I would even venture to say that I HATE that day and don't consider it a holiday. Sorry, I got side tracked. The whole death, destruction, evil, skeletal, blood dripping, spider web spinning, etc., etc. just isn't my thing. Its ok with me if it is your thing, its just not mine. Anyway...

This is the weekend(November 1) in which we will begin transforming our home for the holidays. I'm so smiley right now. Tomorrow I get to sneak away to Canton all by myself to do a little Christmas shopping. That makes me all smiley too. Dave is leaving before the sun comes up Saturday for a business weekend, but the girls and I have big plans. Blake loves the house when its all holiday like, but he doesn't enjoy the actual doing of it. He plans on sitting back, watching a movie, and eating platefuls of his favorite chocolate chip cookies. That is once he's done socializing and all.

Ash is still coughing and crudding. Her appointment to pick up her braces got rescheduled for next week, but she still plans on riding in the morning. She loves riding so much this year and since she's still smiling and not fussing about being sick we figure its ok to let her go. So while I'm off in absolute Canton/Christmas bliss, Dave and Ash will be at Windridge.

Its a little after midnight and everyone else is sleeping. The house is so quiet and peaceful so I think I'll put on some Christmas music and close my eyes too. Life is blessed.

Keeping Distance

Ash is still coughing, still sneezing, and still crudding(don't think that's a word but it's what I call what she's got). No fevers. That is a huge blessing. A stuffy nose seems to be the worst of what she's got. How I wish I could teach her to blow her little nose. I know she would feel so much better if only she could. She just doesn't understand what I'm trying to get her to do.

I'm still keeping most everyone at a distance. My hope is that the rest this week will be what she needs to get over this little stuff without it getting any worse. I do wish she could sleep at night. When she's kept awake she only causes trouble. Not knowing what to do with her tired self she begins to pull of dressings and bags and such. I went through 4 ostomy bags just yesterday and I've already replaced the one that was put on at 4am this morning. So technically we are on bag number 2 for today already. She's tired and congested, but still smiling. It doesn't get better than that. Wish I could still smile when I didn't feel well.

We do plan on picking up her braces this Friday and then going to find some shoes that might hold them on. We were given a good lead on a brand of cute shoes(although they will have to be several sizes too big to fit over the braces) that should work. So she'll have "clown" feet, but they will be cute "clown" feet. I still haven't figured out how she's supposed to learn to walk in shoes that don't fit, but supposedly the braces should be one of the keys to getting her to that point. I sure hope so. I really, really do.

Outside of keeping distance between Ash and the several sets of hands that touch her each week not too much is happening. Other than the usual stuff like basketball practice, soccer practice, football practice, hitting practice, games, youth group, school, etc. I can't believe how much we actually get accomplished each and every week. When you throw Ash's schedule into the mix it becomes a very busy household. Have I told you lately how very blessed I feel to be home and in the middle of all of this? Some days I slow down enough just to find a moment to be thankful.

Dave will be traveling for business this weekend, the kids will be socializing all over town, and Ash and I will begin decorating. The first is just days away and my heart is smiling just at the thought of turning our home into the holidays. I love, love, love this time of year. I may even sneak over to Canton Friday to do a little Christmas shopping.

Hope your weeks are blessed. Trish

In the Air

Change. Its all around us. So much happening in the upcoming weeks. I'm trying so hard not to dread the changes, but to anticipate how much Ash's life will change for the better because of them. Keeping in mind that the dreams we have for our daughter are still there, still in reach, still possible.

Friday morning we will pick up Ashley Kate's leg braces.

Last Wednesday I received a letter in the mail informing me that her wheel chair had been approved by the insurance.

Then on Friday we were told the chair was here, it is ready for her, they are just waiting on the seat back which they expect to come in early next week.

Life is changing for Ash. Her world will be expanding. Freedom to move about will finally become hers and I can't imagine what that might feel like for our tiny girl.

Tonight we are trying to decide where to add ramps to the house, what type of lift system our car may need to have added on, and such things. Things I never dreamed we'd be discussing for one of our children. Life is funny. Some times it doesn't make sense. It just doesn't.

Ash has picked up whatever was going around at Allie's school. So far no fever just the cough, congestion, and such. We canceled all of her classes and therapy for this week to give her a chance to rest and hopefully fight off the worst of it all. She's happy, just stuffy. Still smiling, still being sweet, just not sleeping at night. She can't breathe that well when she's lying down.

Its been a little numbing around here today. Not sure I can put my finger on it. Just feels different for some reason. Change is hard. Still I know it takes change to make us grow.

The End of an Era

In beloved Tarheel fashion our boys ended this season in their lives with a 4-3 win in the finals of the Super Series State Tournament last night. It couldn't have been any sweeter. We all had known for a week that our Tarheel days were numbered and that they would be playing their last tournament under the amazing coaching of Coach Stuckey. It was a hard and emotional week, but they pulled it together, showed up, and played baseball. In the end our kids won another state title(the 10th or 11th we lost count along the way) and their 33rd tournament championship in 4 years of play.

I'm not sure where Blake is headed from here. I know he will be playing. Somewhere. The hope is that a group of our kids will stay together for the next year as they prepare to move into high school play, but the details have not yet been worked out. What I do know is that my son loves the game, is an amazing athlete, and one of the best catchers at this age that can be found. He had the honor of calling each pitch for his good friend who pitched one of the best games I've ever watched. The two of them were amazing and the smiles on their faces as they struck out batter after batter were PRICELESS. They were doing what they loved and they loved doing it. I'll never forget it. Right before Blake drifted off to sleep with a smile across his faced he told Dave and I, "I'll never forget this night. Never. It's one to remember."

Today our Tarheels headed off to school not knowing what their baseball future holds, but with a state championship in their memory banks. What a way to go out. Unforgettable!

Three of the last four originals. They played every pitch of every inning of every Tarheel game for 4 years.

For Blake the next few weeks are full of batting lessons and hard work. He's excited to be working with a new hitting instructor and maybe even a little excited about the prospect of a new team being formed around him and his closest friends. I'm so proud of my kid and his friends. They are such incredible young men and last night they were having the time of their lives. What a blessing!

Unbelievable!

She has NOT only one permanent tooth BUT TWO!!! I am honestly confused by this. I'm too scared to pin her down and really investigate her whole mouth. Who knows how many may be on the top!

Dave thinks its hilarious that I'm so concerned about this whole tooth issue, but I'm not amused by this one little bit. I'm just not. It is really causing me to stress. I'm afraid she's going to loose that tooth in her sleep and then swallow it and then have to pass that sharp little thing through her transplanted bowel and into the ostomy bag. This scenario has him cracking up, but what else would happen to it if she swallows it? Its got to get out somehow. I hope this doesn't happen and I hope it can't cause any damage if it does.

Tell me it Ain't so!

Ok, I'm in complete shock. I just looked into Ashley Kate's mouth(long story not worth repeating) and I thought I saw a tooth growing in behind the row of tiny baby teeth on the bottom. "no way" I thought. I did a double take and sure enough her permanent tooth has already grown in behind the row it is supposed to be on! So I get a little concerned and decide to feel her front row of teeth and sure enough one of them is loose. VERY loose! What in the world is going on? This child is only 4years old. I was not prepared to start dealing with her permanent teeth until she was at least 6 or so. I'm going to go ahead and confess to you that I have been secretly hoping in my heart of hearts that her new teeth, her permanent teeth, the grown up teeth would some how be normal, or perfect(at least pretty close to it). Those thoughts have been hiding deep down inside of me and I've never really said that out loud to anyone, but I just thought that perhaps something would go right for her and why not let it be her permanent teeth. You see, her baby teeth are trashed. Just trashed. From all the months of chronic vomiting, toxic medications, and such, they have been destroyed. It looks as though they are full of cavities and decay, but that is not the case. They have been eroded by the strong acids in her stomach content that constantly came up month after month after month. So I had kind of given up on them and consoled myself with the idea that they were only temporary and that we had a chance with her permanent ones once they came in. So NOW WHAT? What am I going to do. I don't want her to accidentally swallow this loose tooth, but I also don't want to traumatize her by pulling the loose one out. I can't even believe I'm having to decide this at 4 years old. Do kids even begin loosing teeth at the age of 4 or is it just my kid? How in the world are we going to get that permanent tooth pulled up into the correct position? I just really, really hoped she would get blessed with a good second set of teeth. My heart is so sad and I'm really confused as to what in the world is going on in that mouth of hers. Ugh!

Its here

Unfortunately, its finally here. I had so hoped it would stay away from our house for Ashley's sake, but it has not. Allison woke up with fever this morning and a deep cough and sore throat. Something is going around at her school. Obviously, she will be staying home today and staying away from Ashley Kate. I feel so bad for her. She is miserable in there in her bed and knowing she can't go near Ashley just makes her cry.

The kids have been well so far this year and we have been so blessed. Any type of illness this time of year can set Ash back for weeks and possibly months. The plan has been to keep her away from as many people as possible. Its been working. The older kid's schools are our biggest threat. Just the amount of students they come in contact with each day makes it dangerous for Ash.

Ash will be kept away from Allie for as long as it takes and now that she is on the move and now that Allie's bedroom door is very appealing to her its going to be even more sad. She loves to sneak in there and see what she can get into. Allie's already crying knowing she can't hold Ash. No playing with her, going into her nursery, or goodnight kisses either. She's in "contact isolation" so to speak.

Please keep Ash and Allie in your prayers. She's been well for so long and we were so hoping to avoid any threat of illness. We have to be as careful as we possibly can with her right now.

Hope your homes are avoiding illness this time of year. Take care. Trish

Fridays are her Favorite!

For Ashley Kate life doesn't get any better than it does come Friday mornings. She loves Fridays. Not just for one reason, or two, but three, and sometimes even four. Yep, this girl loves Fridays.

You see, Friday is the day she gets to go. We load her up in the car early Friday mornings and she enjoys a little more freedom than she sees any other day of the week. We start her day off by riding. She is LOVING it. Such a big difference from a year ago. She really, really enjoys her horse and the freedom she feels while moving around the arena on him. Its a perfect start to her day. Then we head to her favorite restaurant for an early lunch before any of the crowds come out. She knows whats in store for her as soon as we get to the parking lot. She starts smiling, clapping and signing. We turn around to watch and sure enough she knows just from the parking lot that the biggest, nicest fish tank in town is inside waiting for her to enjoy. She sits as close to it as humanly possible and Dave and I sit and enjoy watching her. She LOVES fish. Really, really loves them. I'm not sure I've ever seen anyone appreciate fish more than Ash does. So its a treat not only for her, but for us as well. She takes such joy in the simplest of things. As if her day could get any better...Dad is off on Fridays! She gets so excited to have him around for the day. They play and snuggle and love life as they hang out together. Fridays are her favorite. They really, really are.

Now for the biggest and best part about this Friday. Are you sure your ready for this? We are leaving for a baseball tournament. Yes, yes, yes, it is true. So far we have heard its a go for this weekend. As long as the rain stays away we should be playing our first game by noon tomorrow. This will be the FIRST game Blake has had all season because every other tournament on our schedule was cancelled due to the rain. Ash LOVES to travel in the RV. She gets so happy as soon as we step inside. I am really looking forward to a weekend away with our kids doing something we all love so much. Just hanging out and playing ball.

Yep, Fridays are her favorite and I think they might be my favorite too. Life is blessed and we are loading up just waiting for the kids to get out of school. Then were off. Yeah, us! Enjoy your weekend.

You know...

...since its raining, and dreary, and cool and there is no ball practice tonight I was kind of thinking about putting on a big pot of Taco Soup, and then for dessert Dave and Blake's famous pumpkin seeds. Not that I would eat any of them(since I don't really care for pumpkin seeds), but they sure make the house smell yummy on a wet, cool, fall like evening. You know...since we can't play ball or anything. Then I think Allie and I may start on a new puzzle for the season while we listen to none other than my favorite Christmas carols(she's begging to start the decorating tonight, but I'm telling her the rest of the world already thinks were crazy for starting on the first). Blake's spending the evening working on a history project and Ashley is looking forward to her daddy coming home so she can snuggle.

You know...home is my absolute favorite place to be.

Fearless

I LOVE this picture taken of our Allie this past weekend. It sums up everything I've always known and admired about my daughter in one big word: FEARLESS. That's my Allie. She's not backing down for anything. She'll take a hit and keep right on going. She'll use whatever means she has to come out on top of the situation and at this moment she wanted that ball and used her body to make sure it was going to be hers. Man, I wish I was more like my daughter! She's not afraid of ANYTHING!




As you might have guess from this picture its STILL raining here in Texas. I've lost count of the days, but let me just share that so far our ENTIRE baseball season has been cancelled because of rain. Baseball players don't play in the rain or on wet fields, but soccer players? Just take a look at what Allie looked like after the first game of three last Saturday:


Trust me when I say she only got dirtier as the day went on. The field was a swamp! I don't know how the girls continued to play as hard as they did carrying an extra 10 lbs of very heavy mud on their bodies. I'm so proud of how well she did this weekend. She was amazing as always. Simply amazing.

I watched her take hit after hit, tumble and roll across the muddy field, a fist to the face and a ball to her gut and still she kept getting up and kept on playing. With tears rolling down her cheeks she never, ever stepped off the field. She played every single minute of all 5 games. We love watching her play. She gets better and better each week and loves it more and more all the time.

The weather conditions were far from ideal, but we still managed to have an enjoyable weekend together. Blake stayed in the RV with Ashley Kate and that allowed Dave and I to brave the weather and watch Allie do her thing. It was such a blessing. I love the way the two of them(Blake and Allie) take such good care of Ashley Kate. They are so comfortable with her and her needs and they really enjoy spending time with her.

So I bet you can't guess what the weather is like here today? I'll give you a hint. Baseball practice has been cancelled. Again. Go figure. I'm so looking forward to basketball season. The only time a game gets cancelled is if a tornado threatens to tear the roof off the gym. Practice starts next Monday and it will be the first time Allie and I have played together. I'll be coaching and she'll be playing. I'm super excited about it.

So many questions

I know it won't come as any surprise to you guys that I tend to be pretty bad about responding to your questions. I don't know what it is about sitting down long enough to post the answers that alludes me, but it just does. Tonight I'm going to give it an honest effort and try to answer some of the ones that you have asked most recently. Here goes.


1. What exactly is wrong with Ashley's mind?

Ummm, don't we all wish we knew the answer to that one. The truth is that no one really does.

During her transplant evaluation process were informed in one of the reports from her scans that her brain "showed a lack of mylenation". What does that mean? Well, mylenation is the "coating" that covers the nerves. Its kind of like the insulation around a wire. It protects what is running through those nerves. A lack of mylenation means that those nerves in her brain never quite developed that protective coating around them. In essence she has scattered messages that don't flow smoothly across the nerves, but they kind of jump around a little.

In addition to that Ash did suffer a cardiac arrest in January of 07. She did code and CPR was performed on her for about 10 minutes that night. Dave and I believe that she had a lack of oxygen or lack of adequate oxygen flowing to her brain during that time as they worked to bring her heart rate and blood pressure back up. Over the next several days the only words I could formulate during rounds were, "is she coming back? Will she be back?" There were no answers other than "only time will tell". They just didn't know when or if she would open her eyes again and if she would be in there or not if she did.

Praise God my Ashley did come back. She did open her eyes and she is in there. She no longer talks, but her mind is active, and intelligent, and she is learning more and more every, single day.

2. Why doesn't Ashley have a neurologist?

We went back and forth with this one for a very long time. As she was undergoing chemo for PTLD there was a time when the transplant team feared the cancer had spread to her spinal fluid and her brain. During that time we were on the waiting list(which no matter how serious the situation is very, very long. It takes months.) to be seen by a pediatric neurologist. The fears disappeared as the symptoms disappeared and by the time her name came up on the list to be seen we asked ourselves "for what? What can they tell us?" The damage that has been done to Ash's mind is done. It can't be reversed. Labeling it, giving it a name does not heal or cure it. Only time and hard work will aide her recovery. So that is what we do. Neurology would just be another appointment each month, another set of tests, another whatever and the last thing Ash needs is just another.

So we work. She works. Hard. She gains new skills and new understanding of the world around her every single day. We are proud of her. More than proud of all she has accomplished. More than that we are grateful. For each new piece of information she learns we are grateful.

3. Is she standing independently now?

No. She is not. She still needs something to lean on. A couch, a therapy ball, our legs. Anything behind her and she will stand up pretty straight. Without that support she does not stand up straight. She bends at the waist and just can't seem to stand with her back straight. She is making progress each and every week as she works in therapy.

The most exciting thing we have seen lately is her stepping. For months we have had to push her legs, pull her legs, and force her legs to move forward. Recently(as in last week) she began to pick up her own legs, bend them at the knees, and take steps forward as we support her hips and waist from behind and hold onto her hands in front of her. She will also hold onto her walker and if we push it from behind she will take steps forward. This is very, very exciting.

The day that I can pick her up out of her crib and lift her down to where she is standing rather than sitting on the nursery floor is a day I dream of. I close my eyes and try and picture what that will look like.

4. Why doesn't she walk?

No one knows. Honestly, no one does. Not us, not her doctors, not her therapists. Not anyone.

5. You mentioned she wasn't potty trained yet, why not?

Because I don't know how to do this. She doesn't understand. She doesn't stand up. She doesn't walk. She has no comprehension of wetting or stooling. Currently she stools into her ostomy bag. Her stoma allows the stool to "by pass" the large intestine and it exits into the bag rather than traveling the large intestine and coming out through the rectum into her diaper.

6. Why hasn't she had her take down procedure yet?

Well, mainly because we have opted not to. Most of the time this is done a year post transplant. She is now three years post. She has a history of rejection. The transplant team wants her rejection free for 6 months to a year before they will consider taking her stoma down. She has now met that goal.

Technically I guess we could have it scheduled, but I don't feel it is in her best interest at this time. Once her bowel is reconnected she will stool out her rectum into her diaper. With bowel transplant the whole stooling issue is a life long battle. Loose stools, frequent stools, etc. Ash doesn't stand up. She can't walk. She does wear diapers. She would constantly be sitting in a soiled diaper and that would cause some very serious and potentially infectious skin break down on her bottom. I would keep her as dry and clean as possible, but as she grows, gets older, becomes heavier, legs get longer, etc. it is more and more difficult to lift her by myself. So at this time we believe we need to wait until she is able to stand on her own. The ostomy bag is what we know. She's had one since shortly after she was born all but about 10 months of her life. I don't believe she will always have one, but for now she does. We have no plans of scheduling her take down procedure anytime soon.

7. When will her wheel chair arrive?

Not sure. It first has to be approved by the insurance and then it has to be made according to her measurements. We are guessing if it is approved that it might come in by the end of the year.

8. Is Ashley eating again or is she still on a feeding pump?

Yes. She just started. She is up to 3oo calories a day by mouth. She does not bite or chew. She only swallows baby foods or pureed foods. We are excited. Today she ate really, really well.

Her daily caloric intake needs to be 1200 calories a day. Until she can eat that much by mouth and drink enough water to stay hydrated she will require her feeding tube.

She did earn a promotion last month from Neocate(which is as elemental as it gets. The bowel has to do very little breaking down of the food itself) to a toddler formula. She is on PediaSure with fiber at this time. The promotion made life easier for us as far as preparation time. Her recipe is so simple. 5 cans of formula, 650ccs of water, and 120ccs of half normal saline. It has been such a blessing for us to get to make this change.

9. Whatever happened to her Make a Wish?

This is probably the most asked question we have had as of late. I really can't even tell you how many times we are asked this. Its not an easy answer to give because we don't really know the answer.

So far nothing has happened. We had the interview. Made her wish. Were informed that her wish had been granted and then given a start date. Initially we were told they would love to get it done in time for her birthday. That came and went. Next we were told in September once the fiscal year reset. We have not heard from them at all.

Its a weird situation. Ashley is currently using the room that we wished to have made for her. Its a big, open, bare room that we have done nothing with because we knew her wish had been granted. But... like I said she uses the room everyday and we really need to get it built out for her as soon as possible. The problem is that we don't want to step on any ones toes. We aren't sure how to handle the situation. I don't think its right to call and ask questions because this is a gift. A blessing being bestowed upon Ash. How do you say "when is she going to get it? When are you going to start? Are you still planning on doing it for her". I just thinks that rude. If they choose to do nothing at all then that is still ok. Its a gift. Not expected. Not owed. Just a gift.

Dave and I have considered starting on it ourselves because the equipment being placed in it is needed for her therapy and classes every single day. Would that be rude? Inappropriate? I just don't know what to do. I really don't, so we are making do for now. All of her teachers and therapists know about our plans for the room and they are looking forward to having such a special place to work with Ash. We are too. Whether or not it comes in the form of Make a Wish is unknown at this time.

For now I'm just waiting. As soon as anything starts to take shape I will be sure and share with you all. It will truly be a magical place for Ash. Someday.

10. Is she enjoying riding?

YES! She LOVES it. What a difference a year makes. She is so happy and excited while riding her horse. It is such a blessing to us to be allowed to partake in such an amazing experience. Dave and I go together every Friday morning and watch her. I am still wiping tears from the corners of my eyes as she goes round and round the arena. It is a dream come true to have her healthy enough to enjoy such an amazing form of therapy. Its truly beautiful to watch.

11. Do you still have your props from her birthday parties and would you consider loaning them or renting them?

The garden party? I didn't keep any of those things. Wish I had, but just didn't have the space at the time. I gave most of it away to guests at the party.

Yes, I do have all of the candy land props(except for the candy jars. They all went home with party guests but they were all bought at Target). Yes, I would be happy to loan them to anyone local. NO, I would never rent them to you. Please know you are so welcome to borrow them.

Yes, I do have most of the Luau props, but the larger props are permanent fixtures in our back yard around the pool. The beach hut and tiki bar can't be moved, but the rest of the items are packed in a few boxes. You are welcome to use any of it if you would like. Remember that much of the decoration was fresh fruits, so those have long ago expired. Hats, leis, relay pieces, lights, beach mats, etc. I do have.


12. Are you enjoying your new home?

Yes. We are so blessed to be here. I miss our little yellow house, but mostly because of all the memories that related to our time since Ash arrived there. We are busy making new memories in this home and we are loving it. Some days I just sit in the family room and look around trying to figure out how we got here. The extra square footage is such a blessing. I watch Ash scoot from room to room or down the long hallway and I try to freeze that image in time. This will be the house she takes her first independent steps in. I walk down the hall toward the game room and the sounds of Allie and her dad playing pool fill my ears. A smile comes across my face. She loves hanging out with him back there. I listen to Blake and his friends run from room to room playing hide and seek and close my eyes burning the sounds of the chase into my memory.

The thought of spending the holidays here have me smiling. My siblings are bringing their families for Christmas and its going to be such beautiful chaos. I can't wait to have them all back here. The four bathrooms made it so easy to host them all for a week this summer at Ash's birthday. This house is a blessing. A huge blessing.

I hope that answers some of the questions that have been asked lately. I 'm sure I missed some. I know I did, but its a start. Right? Thank you for your interest in our family. It is more than humbling to have you traveling this journey with us. Its been some very long years and knowing that you are still coming here to check on us and pray for us blesses my heart. It truly does.

Every Day

She blows me away. Every single day. Everything about this child leaves me breathless. Her beauty. Her spirit. Her strength. Her will. Her heart. I love her so much. So very much. When I looked up from the table this weekend and saw her standing there in our RV she took my breath away. Our baby has disappeared and in her place this little girl showed up and I'm not exactly sure at what moment that happened. I just know that it did.

She took 30 steps Friday morning. 30! Oh, I realize she needed help, but she lifted her little legs, and bent those knees and new just exactly how to put one foot in front of the other for the first time in her life. She cried, and cursed and complained with huge tears falling from her eyes, but she did it. She walked those 30 steps with her therapist's thumbs on her hips, her daddy's hands holding tightly to hers, and her mommy cheering her on and encouraging her to catch up to me the whole way. Dave and I were completely overwhelmed by her strength and her determination.

Ash is well. She is more than well. She is stronger and better than she has ever been and I am so thankful.

Not too long ago I was visiting with an acquaintance whom I don't see that often and she made this statement. "So she's an infant. She'll always be like an infant. Right?" The sting from those words has yet to lessen. I had never, ever thought of Ashley's life in that way. Never. I know it must have sounded like that when she learned that Ash did not walk, did not talk, did not eat, and had not been potty trained. I guess technically she was right, but the way those statements caused me to catch my breath still to this day pains me. What do you say to that? I had no words. Nothing. Just a struggle to continue breathing and hold back my tears. It caused me to think far into the future and try and picture what she was saying to me. At 4, completely dependant on me. At 14? At 24? At 34, 44, 54? No. No should have been my answer. No she's not an infant. No she's not. She's a little girls. An amazing, wonderful, miracle of our God wrapped up in her four year old little body. She's not an infant.

Over the weeks since that conversation I have watched my daughter. Watched her closely. An infant forever? No. I believe in her. I see her learn and grow each and every day. She is moving all about the house. Independently. She is getting into things every day. She leaves her room and heads down the hall. Exploring new doorways, peeking around them to see if she's interested in going in or keeping on toward our room. She's started coming from her room into the family room. She escapes her therapy room and scoots across the foyer just as fast as she can. She express her wants and her needs through sign. Everyday she learns more and more signs. Completely on her own. Just this week? Pretty and water. Out of no where they came. She is so smart. So very smart. She won't be dependant on us forever. I just don't believe that. One of these days all of the pieces of information inside of her brain are going to connect and she's going to figure life out. I just know it.

I am so honored. So very blessed to have a front row seat. I get to experience each and every moment of her life right next to her, and I have to say that the world through Ashley's eyes is a beautiful place. More beautiful than it ever was before her. The everyday things I once never appreciated? I have the most amazing awareness of how special it is to feel the wind blow in your hair just by watching her eyes sparkle as her pony tail blows in the breeze. The rain has never felt so incredible as it has after watching her scrunch up her nose from the drops falling on her face. Listening to the birds sing is a whole new experience as she sits on my hip as we go down the front walk. She signs for me to "shhh, listen". "Birds" she signs. So I be still and I listen and I see the smile come across her lips and I have whole new appreciation for the world and all that is in it.

Every day. I love her more and more every day. Its a very special place to be. Next to her. Every single day.

Can you say Tow-Mater?

Ashley Kate is having a fit this morning. She is very out of sorts because she has school today and her teacher will be arriving any minute. Ordinarily, before the whole "Cars" infatuation began last week she would be fine with it, but today she's not. She woke up signing for "Cars" this morning. I just politely ignored her and talked about how beautiful the weather is and that we were going to have a great day, but she kept insisting that I acknowledge her request for "Cars". So finally I said, " Not today baby, you have school and then we can watch it." To which she very boldly signed, "Tooth brush, Car" and followed those signs with constant pointing toward the TV. So, in Ashley's world of speech which just happens to be her hands, "tooth brush and car" means Tow-mater (Tow-mater is the tow truck in the movie and he happens to have very large buck teeth).

She's brilliant! Honestly she is. Her mind works in amazing ways. She makes me smile so much and I can't stop laughing at her way of asking to watch Tow-mater this morning. What a joy she is!

October Morning

Its a cool October morning here in Texas(not something that happens too often) and it is bringing such peace to my soul. The older kids headed out the door with sweatshirts on and Ashley Kate is snuggled under a blanket in my room. I'm sitting in the family room enjoying the quiet and trying to decide just what scent of candle needs to fill our home this morning. I've already chosen a CD of classical Christmas music to play(don't laugh, its just something my sisters and I have always done. We don't celebrate Halloween and so the beginning of this month is when we begin to enjoy the sounds of our very favorite season. In just a few weeks, I literally mean only 3, I will get to begin decorating and I'm smiling all over just knowing its so close). Its a wonderful October morning. The fall gardens have been planted and I can look out the bay windows and see the bright colors of mums that line the front of the house. There are pumpkins on my front walk and a wonderful fall garland hangs around the door. My heart is smiling.

Ashley Kate opened her eyes this morning and signed "Cars" which absolutely tickled me. I scooped her up in my arms and she clapped wildly as I walked back toward our bedroom with her. Sleep in her eyes, hair a mess, diaper still wet and the first thing that came to her mind? Cars! Its her new love. Disney's movie "Cars" has captured her heart and is currently causing her to giggle so loud that I can hear it all the way in here. Her laugh is so amazing. She fills our home with it and no matter where we are we all pause in what we are doing and say, "do you hear her" to each other. The scene where they are "tractor tipping" is one of her favorites this morning and she is cracking up each time a tractor falls over. She's such a silly girl.

Ash and I plan on doing a whole lot of nothing special together today. Its those nothing special moments that really are so incredibly special that I celebrate this time of year. She's home with me and here with me and that makes every moment special. She has therapy this morning around eleven and then we are going to hang up all her laundry, put away her stack of clean blankets and organize her closet. Sound exciting? It really kind of is. Her closet is full of medical supplies that are kind of in the way at the moment. Currently we are so blessed that the majority of what is housed in there we are aren't needing to use. Wow, that feels good to type. So my plan for today is to allow her to sit and play around my feet (the closet is really big) while I pack away, label, and reorganize all the totes of supplies, in hopes of making it a little easier to manage. I've learned over the years not to toss any of it since things in Ash's life can change so quickly. I've made those mistakes before and its just easier to find a place to store the extra supplies instead of having to wait on new ones to be delivered when her health gets crazy again. Of course I'm always hopeful that that will never happen again, but its better to have dressing kits, syringes, lab tubes, culture bottles, and such sitting around. I'm also going to pack away some of her clothes and shoes that she has outgrown. Its always exciting to get to do that. Growing only takes place when she's healthy and absorbing her nutrition. So outgrowing her clothes is a sign of a healthy transplanted bowel. Yeah, I'm smiling about that. Did I mention that after two years of wearing a size 5 shoe she has finally outgrown them and is in a size 6? I wasn't sure her feet would ever start growing, but they did and so her pink mary janes are a size 6 and so are her red ones, and brown ones, and black ones. Sure wish I would have known about the whole shoe over the brace thing a few weeks ago when I bought all those shoes. I was just so excited about the new size that I went and bought them all to match her fall clothes. Luckily I hadn't bought her new keds yet. Anyway, its still exciting to know that she is feeling good and growing. Mary Janes or not, her feet are growing.

So thats whats happening here in our home this October morning. Lots of nothing special that I tend to find so incredibly special. God is good and we are blessed. Hope your morning is filled with all things that bring smiles to your faces and peace to your hearts. Take care. Trish

He's 14!

Just shortly after 6am this October morning my son turned 14 years old. Wow! I find it so unbelievable that we have already spent 14 of his 18 years in our home together. It was just yesterday that he arrived in our hearts and yet today he's made plans with friends to attend the homecoming game and then go grab some dinner. Did you notice I said "plans with friends" and not plans with his family. If nothing else an evening like that makes me realize he's no longer little, but instead has grown up right in front of our eyes.

I look at Blake and I can't help but smile. I listen to him talk and I smile. I hang out with him and his friends(on occasion, you know like when they need a ride here or there or when their standing around my kitchen waiting for dinner to be ready) and I smile. He just makes me smile. I love him so much and even more than that I like him just as much. He's just a great guy.

So this evening while he hangs with his friends, his mom and dad will be at home getting things in order and finishing all the last minute details as we prepare for his party tomorrow night. Not a huge party, just a group of his closest friends coming over for a cook out(steak and shrimp) and a night of music and movies out on the lawn(I've rented a popcorn machine, filled the fridge in the tiki bar with drinks, and bought about every kind of movie candy you can think of), flag football, maybe a dunk or two in the chilly pool water, and then around midnight the girls will go home and the guys will pull out the PS3 and play on the big screen out back until the wee morning hours. Its a little different this year, no balloons, no cake, no silly games, just a bunch of teens hanging out and having fun doing what teenagers do and a mom and dad who will sit back in the shadows sneaking in a few pictures and remembering how blessed we are to be his parents.

Blake, we love you more than words can describe. We are so proud of the person you have become, and we look forward to seeing what God does in your life over this next year. Thanks for being such a great kid and for making parenting you a joy. You truly have made it easier than I think it was supposed to be. I love you, your dad loves you, your sisters love you and we all wish you a very Happy Birthday.

Hopeful...

This morning Ash had her first appointment at the prosthetic and orthotic clinic. By the end of the year her tiny feet will no longer be wearing little pink mary janes. I hadn't even thought about that. It never crossed my mind, so preparing my heart for the disappointment about this little fact didn't take place. I heard these words, "although her little shoes are awfully cute, she won't be needing them once the braces come in." Huh? I asked, "She won't need to wear any shoes with the braces? Silly me. That's not what he meant. Of course she'll be wearing shoes. They just wont be pink or cute or little or mary janes. Oh.

Please tell me why things like this sting my heart so. Why does something so trivial cause me to catch my breath and fight back tears. I just don't get it. There only shoes. Shoes of all things! In the grand scheme of all her life has held what style of shoe she gets to wear should mean NOTHING to this momma's heart. So why then does it?

As I have thought about this all morning long I have decided it must be the desire that still resides deep down inside of my heart for normalcy for my daughter. In the inner most parts of my heart I still want her not to be different. Not to look different, act different, sound different, or move different than any other four year old out there. I don't want her not to wear cute little mary jane's and I don't want her to wear ankle braces. I don't want her to move around the room in a wheel chair. I don't want my dreams for her to be dead. Call me silly, stupid or selfish if you will, but my mommy's heart wants her to run and skip and hop all over my house in pink mary janes. It just does. That's the honest truth. I can put on a happy face all day long, but inside of me my heart is breaking. Normal is not going to happen. Its just not.

We expect that by the end of 2009 Ash will have her braces and her motorized chair(did I ever share with you that its pink and the seat is monogrammed:). Life will look very different for our little one. She will finally have the support her little legs need to gain the strength it takes to learn to stand and to walk independently. She will also have a new found freedom as she learns to maneuver herself from room to room at her will and no longer be dependant on me to move her from place to place. Its exciting and heart wrenching all wrapped up in one big emotional mess inside of me.

My heart is hopeful. Hopeful that the braces will be the key she's been missing all these years and that they will lead her tiny body up out of that chair. That's my hope for my sweet Ashley. I remain hopeful that she will walk. On her own. Very soon.

Our therapist said to me, " If I told you that she was going to walk at the age of 5 would any of this had mattered to you?" The answer to that is "No." None of the struggle we are going through at this time would matter one little bit just knowing that she was going to be able to walk. 5 or 25? Still it wouldn't matter if only I knew that one day she would. I have to stay focused on that goal. Ashley Kate is going to walk someday and even though it may not be in her pink mary jane's I will still celebrate.