Why does it have to be...

SO HARD! Seriously, this is why I have such a love/hate relationship with hospitals, physicians, and nurses. You get some new "know it all" "it has to be MY way or no way" walk into the room and make life for families like ours who have been dealing with a terminally/chronically ill child for years miserable. I can't stand it!

We have been doing this EXACT same procedure with Ashley Kate's central lines for YEARS and just because you want to throw your weight around the hospital and call the shots and make a total you know what out of yourself...for WHAT? What is your problem?

I'm tired. We are tired. Get over yourself. Being kind, courteous, and easy to work with goes BOTH WAYS. Just pull the records from last Wednesday and you will see we've done this before, in this very hospital, in this very room BEFORE! MANY TIMES!

Sometimes its just too much!

I would like for them to just try and make something this simple easy for us. Please. Just make it easy as opposed to proving to us that you are the doctor. Who really cares? Trust me, we aren't impressed anymore. We are soooooo over that.

Just had to vent. I haven't slept well in about 10 days. Forgive me.

Emotions Run High

Christmas with our kids was so much fun. We enjoyed every single minute of it and NONE of us are ready or willing to remove the decor from our home. We simply love the feel of it. Someday, maybe a day in February?, maybe not, we will pack it all away until next year.

Two days before Christmas we were hit with the disappointing news that Ashley Kate's blood cultures were positive. Again. I thought based on her turn around that we had caught it early and hit it hard. I was not expecting to hear that the lines, both lumens, were still infected. Needless to say my emotions were on edge and I did my best to keep them from running away with the news and causing me to panic. Those positive cultures earned us an extended 17 day course of antibiotics plus the addition of a second agent.

Next we lost blood return in both lumens once again. Trying not to get too emotional about the "difficulties" we are starting to have with her central line. If I allow myself it could get really, really out of control. I'm trying so hard to focus on what we do have and what is working. I have to stay squarely focused on that. The line infuses. That is the most important thing.

We need new cultures but are unable to get them so Dave is planning on spending another evening with Ash in the ER. I hate that its the only way to get TPA(clot buster) for her line, but its the only available avenue here in Longview.

When you mix in 4 hours of sleep a night for the last 10 days or so and the lack of proper supplies sent in our deliveries this week it gets a little emotional around here. I find myself on edge and ready to cry at a moments notice. I'm tired. I'm frustrated. I'm really, really trying to keep it together.

I really believe so much of it has to do with the date. A year ago we were in Nebraska being evaluated for transplant and searching for a line placement above her diaphragm. We have that line in place and have had for a whole year now. I simply can't believe we have been given a whole year. I see her giggly, smiley, little face in our home every single day and I'm so, so, so content and happy to be home with her. I never would have dreamed we would have spent another Christmas together. I believe with everything in me that its because we have decided to slow it all down and just allow her to be a little girl for as long as we possibly can. Had we given the go ahead I don't believe she would be with us. It is such an emotional turmoil we find ourselves in. What joy! What happiness! What peace! She has had another year of all of those things in her life.

Still I shake inside with the acting up and the chronic infection of this line. I don't have the answers. I can't see what lies ahead of us. I can only take it one day at a time and try my best not to make decisions for her out of fear. I have to allow her to live each day.

It has been 6 months since our last conversation with our transplant team. Time goes by so quickly!

Tomorrow we are meeting a nurse who may be a possibility for us. I am emotional about it all. Not sure how I give up some of my mommy duties to some one else or how I learn to have a stranger in our home around the children every day. Its such a journey. Its taken us 6 years to get to the place that we could even consider taking in some help, and I still don't know that we will be able to accept it. We feel so strongly that it is our responsibility to care for Ashley Kate. We are her parents. It is our job.

I'm processing so much right now ... Line infections, positive blood cultures, round the clock IV meds, little sleep, lack of blood return, nursing care, transplant...

then I look at her and...

I realize its all ok because she's here. She's happy. She's so worth this.

Life is blessed. Emotions run high, but I'm so blessed.

This Early Christmas Morn

I wonder what she dreams about. I watch this tiny girl sleep this morning and wonder. She has no idea that today is any different than any other day. And...thats ok. Because every day is just as exciting and her joy is just as full.

I'm sitting here in the family room this early Christmas morning anticipating what is to happen in this very spot in just a few hours. The children are all sleeping soundly but here I sit at 4:30am so excited about what is to come that I can't find sleep. I'm even more excited as an adult than I ever was as a child.

The joy in Christmas comes in the giving. I never could have imagined how much fun it would be to be the giver of the gifts. As a child I thought the excitement came from what was to be received, but now I see. The gifts we give, not the ones we receive bring the biggest blessings to our lives.

What joy I feel in my heart from knowing how blessed the kids are going to be this morning. I'm so, so excited. I can't wait to bless them. Seriously, I can't wait. I'm going to though because Dave is not near as excited about being awake at this hour! I know because I tried to wake him up to talk to him about how excited I am. It didn't go well:)

We have enjoyed precious moments this holiday weekend. So many sweet, sweet moments with our kids. Making memories. Following tradition. Playing games. Baking. Laughing. Fellowship. We finished our annual Christmas puzzle last night all huddled around the table trying to be the one to put the last piece in its place. I love that. Love what a puzzle can do in the center of our home. Its amazing. Simply amazing to sit around the table visiting with those I love the most in this world. I found myself just sitting back watching, listening, and smiling as the bantor went back and forth.

Our sweetest gift this year lies just steps away, snuggled all safe in her bed. Her sweet rosy cheeks glowing in the light of her Christmas tree. I stand over her bed this morning and think how blessed, how truly blessed we are to have her here. A year ago we were so afraid. So desperately hanging on to this place in her journey. I can't help but feel joy when I see her face. Her giggles fill the rooms of our home. They are so full, so true, so joyful. She is our gift. Our tiny, precious gift. How could I ever ask for anything more? Nothing in a package could ever compare to what we have been given in this little girl.

I wish for each of you to feel the joy of Jesus in your hearts and your homes this day. He truly is the gift of a lifetime. I'll never understand the plans of God or the why's of all that is, but I know He loved us so much that He gave His most precious gift to us on this day. He walked with us so that we could know Him. How amazing is that!

We wish each of you a very merry Christmas and may you feel surrounded by the love of God.

Still Amazed

I find myself still amazed and so humbled by the involvement of an Almighty God in our lives. With all that goes on in this world and all that is important just to know that He cares, He hears, He answers, and He ministers to a little family in Texas brings tears to my eyes. I matter. She matters. We are important to Him and our hurts are His hurts.

Last night Dave and Ashley Kate spent about 3 hours in the ER working on her line. I was so thankful for his willingness to sit up there after a long day in the office to spare us a very, very long day in Shreveport tomorrow. After the first attempt there was no blood return and I was feeling pretty down. Dave was calm and told me to keep praying for her. I asked her how she was doing up there and he said, "she's the happiest kid in the whole ER". That totally made me smile. She is a happy, happy girl. They made it home a with a very sluggish, slow blood return. It was getting late. They were both tired and her antibiotic was due and her TPN was late. He told me he wouldn't be surprised if it stopped working again and needed to be done Thursday as well, but at least we saw it was capable of pulling back. This assured us it hadn't moved out of position.

This morning we have very easy blood return from both lumens. I'm so thankful. Truly it humbles me that He hears and answers our prayers. Not every answer is the one I'm looking for, but sometimes it is. I feel such a burden lifted going into this holiday weekend with her. The line is working and she's feeling so much better. We've seen more smiles than not. We've been fever free for more than two days. We've had no nausea. We've seen her energy levels rising. The plan is to repeat cultures tonight and finish this course of treatment (10 full days of vanc). If the cultures return clear than we will go back to normal. If they grow out again we will add another med and keep on fighting.

Overall I'm feeling encouraged by her progress and the smile on her face. Christmas looks as if it has been saved(except that my camera broke this week and I don't have a back up:( Seriously, that is not an option. We have to come up with a solution!

Well, I'm off to pick up some groceries. Blake and I are baking this afternoon. Merry Christmas guys.

Heavy

There are days when the journey that lies ahead of us weighs on my heart so heavily. I feel its physical presence in my life and I can't shake the weight of it all.

Tonight I feel the crushing presence of what the future does and does not hold. It hurts so much. On a night when I want to get lost in the warm glow of the tree lights, and the music that floats through our home I'm fighting an internal battle. My chest is so, so heavy. Its my heart. The burdens, the fears, the worries, the whole of it crushing me and filling my heart with those things that I so desperately want to ignore.

Ashley's line is struggling tonight. I'm trying not to panic. We've found ourselves in this place more times than I can count over the last 6 years. Even over the last year knowing we have no other options but for this line to hold on we've been in this place. I don't know why or what the cause of it is, but I'm holding on till our appointment in Shreveport on Thursday. Doing my best not to allow the struggle of it to steal from our family what should be a wonderful time of the season. Just days before celebrating Christmas day I shouldn't be battling the weight of this journey, but the loss of blood return in both lumens of her line has thrown me. Two days ago we lost return in one lumen then tonight the other. Just this morning we drew labs and although sluggish the blood did come back. Now...we have nothing. It makes me so afraid. Trying my best not to cry tonight. Trying not to allow fear to overcome me. Trying to be still...to be thankful that both lines are infusing. Knowing that without the ability to infuse into those lines the journey would be coming to an end for us. With that in my field of perspective I can try and focus on what we do have right now.

My plan is to take her to her appointment Thursday morning and then ask them to send us down to admitting and over to procedures to have both lumens infused with TPA. Its worked before. I need it to work again.

I'm just feeling nervous tonight. Knowing we have an infection in the line and now having functional difficulties with it I'm beginning to lose sight of what I've worked so diligently to provide for my children this week. A holiday at home. Another Christmas together. More memories. We so desperately need to make more memories. Happy ones. Filled with time in our home. Dave and I need it. Blake and Allie need it. Ashley Kate needs it.

Confirmed

Just as we suspected it has been confirmed that Ashley Kate's blood cultures did indeed become identified with staph epi. Ugh!

Here we go again.

The problem with staph epi is that if forms a protective layer if slime inside the catheter making it almost impossible to clear. The antibiotics can't penetrate inside the layer to kill the bug.

I'm so disapppointed.

But...she looks better today. She is sitting up. She's giggled a few times. She's interested in her Ipad again. She's fever free. She looks normal minus the swelling in her face.

I think we just keep on doing what we are doing and watch her beat the odds once again. They assured us the last time she had this bug that it was IMPOSSIBLE to clear. It cleared anyway. I'm going to focus on that.

Holiday Happies Tour Part 3

I guess I should say welcome. I really should have said it on the first post in this little holiday series, but I didn't even consider starting at the front door early this week when I began. Now that you are here again let me welcome you to our home. How I would LOVE to have you all here for the holidays and to meet each one of you who have loved, supported, prayed for, and carried our family over the last 6 years. I know that won't happen this side of Heaven, so this will have to do.




This is the wreath that greets us and hangs on the front door. Nothing real spectacular. Just ordinary I suppose, but all things holiday seem so much more than ordinary to me. It warms my heart to open up the door and enter back into our home with this hanging.




Now that the door is open and you have all come to visit this is what it looks like as you step inside. I love how our home opens up to the family room. Its warm and cozy and everyone is welcome here. I also love having a glimpse of the outdoors as I sit by the fire. Those french doors are one of my favorite changes made once we moved in.

If you look close enough you can see our little holiday tree that sits on the other side of those doors and you can also see the old windows hung on the wall with the holiday wreaths. Again, one of my favorite decorations this year.



Nothing too special in this photo, but I wanted to add it to show you how I like to scatter pine cones on anything that stays still. All through the house you will find two or three lying next to things, lying next to nothing but each other, or next to nothing at all. I totally love a great pine cone!




Another glimpse of the foyer. This table has been in our homes forever. Dave built if for me years ago out of some old fence panels and its one of my very favorite things. I just added a twisty, vine of berries to some garland and hung it off to one side. Sort of mirrors my mantle piece this year.



My newest favorite thing...a branch tree, wrapped in a burlap base and tied with a string of jute. I actually made it this morning after getting the idea from a friend a couple of months back. Its simple, its warm, its everything I love.


Here is another picture of it once I decorated it. I added some holiday tags, and then attached some jute onto the the top of some unopened pine cones and hung them from the branches. I love it both ways. Decorated or not.

The reason I'm loving this so much is the purpose its going to serve in our home. Its a blessing tree. A prayer tree. A need tree. We are going to hang our prayer requests, our praises, our thanksgivings, and our needs from the branches. I'm so excited to see God work in the lives of our family in this tangible way. Things like life for Ashley Kate, colleges for Blake, try outs for Allie, being a blessing to our patients, ministering to those in need, an upcoming exam, etc. , etc., will be written out for us to pray over.

I love it!


Just a shot of the patio tree. Nothing but super, super simple. Gives sitting outside a festive feel. It really helped to bring the inside out and the outside in this year. Love that I can view it both ways whether I'm out back or sitting inside by the fire.

I'm really hoping for some cold nights the week of the holidays to enjoy smores on the patio with our extended family.


This is the formal tree. Just a little more blingy than most of my decorations, but I do enjoy it. This is our formal dining room that sits just off the foyer and across from Ashley's play room. I really enjoy this view taken from the kitchen because I love the reflection in the mirror. This tree doesn't have a top made for it yet so I just tossed that star up there and now I realize it looks totally ridiculous. Forgive me for that?


The holiday table. Love to see the candles flickering through this cracked glass. Such a warm feeling. This table stays set all season long. We don't really use the formal dining that often. We tend to have a more relaxed atmosphere in our home. Just comfortable, cuddled up under a throw, watching a movie together.




This sits in the bay windows in the dining room. Love the idea. Not thrilled with the execution, but it is festive. Should be so easy to toss ornaments into glass, but I can't seem to get them to fit just right. I'm leaving it though. Like I said its the idea I love. I added a piney garland and some grapevine around the base and it helped me like it a lot more.

Like I shared earlier this week... toss in a pine cone, some greenery, a few red berries, and light it all up...nothing feels more cozy around the holidays.

So glad you guys hung in there with me. Hope this is what you were asking for. A few of you wanted to know where the lanterns on the mantle came from, I picked them up in Canton. Someone else asked about the greenery. I use all artificial, but would LOVE to have some real tossed in the mix. There hasn't been a good time for me to get Ash out to locate any. I do use several different types of greenery and mix them all up. A lot of it came from an old Christmas tree that I bought from someone for $15. You can't buy that much garland anywhere for that price. I've used it on everything(like the top of the bookcase:).

So thats our home this season. Turn on the carols, light a delicious baked apple crisp candle, and snuggle under a blanket. I love Christmas!

Its not so much about what you have to decorate with, but more about how what you have on hand makes you feel. Keep that in mind. My things aren't amazing or priceless or anything...they are nothing more than ours and the tradition of pulling them out each year brings back the memories making the house feel so warm and inviting. Happy decorating to you guys and Merry Christmas. I'm smiling as I type that!

Gram Positive Cocci in Clusters

Ashley Kate is sick today. She went to bed last night happy, "healthy", her normal little self. She woke up this morning not right. It went from just a look that I recognized to a different type of nausea than her normal every day, to full out vomiting of an awful smelling bile(again different than her normal bile), to becoming lethargic, and running a fever.

I knew instantly it was a line infection, but really didn't want to speak it aloud until confirmed. Just minutes ago the lab called us to confirm the positive blood cultures.

I'm so disappointed. So sick over it. So sad.

She's been out of doctor's offices and hospitals for over 4 months and we vowed not to speak of it because in our world the moment you mention a "good" run it ends. Usually comes screeching to an end. I can't explain it, but its an unwritten rule in the world of transplant patients that nurses don't speak our children's names or mention that they wonder how so and so are doing and parents don't speak about how long its been since the last line infection. As soon as you do then the inevitable happens. You can argue with me to the death on this one and I will show you time and time again that it is true. Again, I can't explain this, but it is the way it is.

Just yesterday I called to make her an appointment with her team in Shreveport since they hadn't seen her in over 4 months. I wanted to make sure to take her in even though she has been amazing before the end of the year so no one would say we haven't seen her in our office so we can't write TPN orders, or send this order or that if we needed anything. Seriously, now that I went and scheduled the appointment less than 24 hours later she's sick. Why does it happen this way? It just plain sucks. Sorry for my language but it does.

We were hoping to get an early jump and start a broad spectrum by this afternoon but it didn't happen. We were given the call just before 6pm that they would call in an IV antibiotic first thing in the morning. Now even more than it did around 6 this evening it makes my stomach sick to have factual knowledge that indeed a bacteria has invaded and is attacking her blood stream. I knew it had, but was still clinging to the hope that nothing would grow out and perhaps it was just a 24 hour thing with her. No such luck this time.

So my sweet little girl lies in her bed tonight, body under attack from a bacteria that won't be identified positively for at least 2-3 more days with nothing to fight against it until tomorrow. We will be lucky to have a defense for it by noon. I'll feel really lucky if we can get meds delivered by then.

I will say that she is resting comfortably at this moment and she even seemed to perk up a slight amount this evening when her fevers broke. Those are positive signs. As always our plan is to keep her here in our home and to treat the infection with everything humanly possible as long as she is stable. My goals never change when it comes to this. Ash is better at home. She heals faster. Is more comfortable. Feels safer.

I assume its the dreaded staph or something along those lines. It seems to be our nemesis.

Nothing like be reminded of her frailty mere days before Christmas. It seems to have shattered the illusion of safety I've tried to live under the last few months.

Once again I'll remind everyone out there as I was reminded just today... this little piece of plastic that is inserted into her superior vena cava is all that keeps her alive. Its also what very well may kill her.

I hate this part of our life. Truly hate it. At the very minimum my heart is hanging on to having 4 1/2 more years with this very catheter that is infected. Thats the minimum length of time my heart is hoping for.

In all reality eternity with her wouldn't be long enough for me. So as the rain falls from the sky tonight the tears I've been holding back for so long not allowing to fall because all was "well" in our world are falling again. When Ash is sick our family hurts. Everyone of us feels it. You can see it in our faces. Hear it in our words. Catch glimpses of it when you look into our eyes.

My hope is that we turn this around quick.

A little sad

Last night I sat watching Allie do her thing at club volleyball practice and half way listened to the conversations that surrounded me. You see Allie had a hard day yesterday and the two hours I spent with her between after school and before practice were hard on this mom's heart. I listened to her cry and cry and cry and not understand and honestly it broke my heart. The best advice I could give her was to go to practice and take it all out on that ball. Which she did and which is why I could only half way pay attention to the surrounding conversations because I was so focused on her and loving her and supporting her and just being so dang proud of her no matter what.

In those moments I was really thankful for learning that sometimes you just have to be on there side. As a mom, you just do. Its what they need in those moments when the hurt is so big that they can't see the cause or the meaning of it all. There are going to be days when kids mess up, and teachers are mean, and boys are stupid, and practice is awful. There are going to be days when you feel like you can't do anything right no matter how hard you try and whether its true or not thats the way you feel because your 13 years old and the only wisdom you have in your arsenal is that of a 13 year old girl. On those days its nice to know your mom can bite her tongue and listen hard and cry real tears along beside you if for no other reason than being your mom.

I like to think of it as parenting with Grace. Or perhaps mercy. Call it whatever you want. The point being a kid is going to make mistakes sometimes. Maybe lots of times and not every one of those times do you have to be the voice of reason or the disciplinarian or the long arm of the law. Sure you do some of the time, but there are times when I like to be nothing more than their mom, their safe place, and the one who will listen and not correct.

This morning when Allie woke up she was a new girl. Her old self. The happy go lucky, take on the world kind of girl determined to make today better than yesterday after learning the valuable lesson of not allowing any one else to steal a day of your life from you by letting them get in your head. It was the girl I love so deeply. The one who makes us laugh so hard our sides hurt. The one who is fiercely competitive. The one who makes me hold my breath as she walks out the front door for school because she is just that beautiful. Yeah...thats my girl.

Allie,
There are going to be days in junior high that cause you to be a little sad. Its the way junior high works. Although it may seem like the end of the world at the time its really not. Your world is going to expand and be SO MUCH MORE than you can see right now. These teachers won't be your teachers forever and that boy won't even be a memory you can recall one of these days. I wish you could see that what I'm saying is true, but I understand that you can't. I get that. I really do. I was 13 one year of my life and I didn't get it either.

What I want you to remember is that you are Amazing. Priceless. Beautiful. Set aside. Treasured. Forgiven. Purposed. Thats what I hope you can recall from yesterday. Oh yeah, I want you to also remember that a volleyball is a great representation of those who hurt you and its legal to hit "them" as hard as you want when your in the gym. Let it all out when you get a little sad. The ball can take it, and you'll feel so much better when your finished.

I love you sweet girl. Today and for always.

Holiday Tour Part 2

So...I just realized after loading all of these pictures on here that I'm writing these posts a little bit backwards. After much thought I decided...I'm ok with that. Hope you guys are too! I haven't taken any pictures of the front door or foyer yet so that will be the next post which in all honesty should have been my first. Oh well!


If you are not at all interested in our simple holiday decor then please let this be this disclaimer that tells you to skip this post and probably the next and I guess the previous one too. I love to look around the blog world at other homes and get inspiration for my own so maybe you do too? Except that I may not have much to inspire with:)

Lets begin with our family room. Its the "nucleus" of our home. We all have our separate rooms in which we spend time(all of us except Dave and I. We like to share:), but this room is where all the day to day interactions and stuff happens. Its one of my very favorites! Especially during the holidays because I truly believe that evergreens, candles, glowing lights, berries and pine cones make a house a home. Just my personal belief:)

This is our family tree. I like to say its my organic tree except that Dave and Blake informed me that that doesn't even make sense. I don't care though because it describes to me what I'm trying to say about it. What I mean is that most of the decor on this tree are natural materials and such. Kind of. Anyway, here it is.


Its full of ornaments made from wood or metal or glass. No plastic or resin or anything of that nature on here. Except for the candles(too dangerous to use real ones so they are fake and made out of plastic). Love them though!


I used a lot of burlap this year. Totally love it! In red and its natural color. I use a TON of pine cones collected from our home town of Longview. Totally cracks me up to see bags of pine cones for sale in this town at Target or Walmart. Does anyone really buy them here when every other yard is covered in them? Most neighbors welcome you to pick them up and get them off their lawns! Works out nicely for me because I use them EVERYWHERE in my holiday decorations.


I added some birch branches to the tree this year. At first the guys didn't get it, but now they love the look. Just some branches randomly sticking out all over the tree. Do you see them? There's one on the top left of the tree thats pretty easy to see in this picture.

What else can share about this tree? I guess you could say I'm a Christmas tree snob. I'll never have a real tree. Great debates on this issue, but for me I like the uniformity of a fake one. I can do so much more with it. To each his own though. I only use clear lights. Totally hate the colored kind in any variety. I also HATE tree skirts. Sorry, I know there are some nice ones out there but its just not me. I ask Dave to cut down the poles on ALL of our trees so the branches either lay on the ground or they come very close to it. My favorite thing about this tree is the way the branches are fully touching the ground. Weird I know...but thats my style. Just prefer it that way.
Last picture of this tree... I promise! I wanted to show you the book shelf. I really love it this year. All of my favorite things are on it. Huge baskets of pine cones, Willow tree nativity(spread it out over 3 shelves this year and I love it), holiday pictures of the kids, copper star, candles, and lots more. Its just so wonderfully Christmas! The greenery on top lights up at night and the candles flicker making the family room so homey. Seriously one of my favorite areas of the whole house this Christmas.


Moving on around the room. This post is really getting long. You can totally skip all the words if you want and just look at pictures. I'll never know if you did so you can totally get away with it!


This is the mantle piece this year. Pretty simply. It only covers one half of it and I LOVE it. It hands off the right end and its lighted. I'm horrible at taking pics of the lights so I didn't even try to show you anything lit up. Trust me when I say how pretty it is at night with the lanterns flickering and the greenery lit up.



This is the center piece on the coffee table. Love the the pine cones, berries and candles. Again its so, so simple and thats what I love about it.


New piece made from things I already had hanging on the corner of the doors. This is something I saw in the Frontgate catalog this year but was in no way going to purchase it. I just came up with my own version. It makes me so happy.


Totally simple centerpiece on the breakfast table. This is the table we spend lots of time at together. Playing games, sharing meals, working puzzles, and doing home work. It all happens here on this table in the corner of our family room.

You can't go wrong when decorating with evergreen, berries, and candles. All of the greenery smells so yummy from an oil that I add to it each day. It smells delicious. Orange and sage of some type. Delicious!

Huge baskets of pine cones sit around the house. There are two of these on the bottom shelf of the book case.



Ok...one of my FAVORITE pieces. Not sure why I love this so much but I do. Simplicity at its best. An old window hung out on the patio...add a wreath...and its done. There are two of these pieces hung on the same wall outside the french doors. I love to watch the birds in them. Its become a very popular place this holiday season. So fun to listen to carols play and sit by the fire watching those little birds hop back and forth between the windows.


I just made an executive decision to delete the reaming pictures of this post and save them for another day. Its getting really long and boring! So I'll save the formal dining room and its decor for another day. Or not. I'll just end with one more picture. I couldn't resist.




I think she's the sweetest thing I've ever seen! Hands down she's the favorite thing in our home this holiday season.

Happy decorating to you and yours and Merry Christmas. I sooooo love saying that! Have a blessed day.

I can't believe it!

After a week or so of no sign of breakage or skin infection spreading to Blake's left arm tonight we have the beginnings of the same thing he experienced two weeks ago. We (he and I) are so disappointed. He has had the toughest time trying to catch up from the classes he missed while staying out of school and has been up late into the night trying to study for days and days. He announced tonight that there is no way he can miss anymore school. Our only saving grace is that its in the beginning stage which gives us about two to three days until its completely opened up and raw. That means Christmas break will be here. The most discouraging thing is that he has a very important baseball camp in Dallas this weekend that he simply can't miss. My heart is so sad for him. I can't even imagine the pain he is going to endure during it. Not to mention how his skills will be inhibited because of it. Total frustration! The timing is so awful for him.

I don't know what else to do for him. It looks as though its going to run in cycles from arm to arm as long as the skin in under stress. Being in the middle of basketball season and winter training for spring baseball keeps it totally stressed and weak.

I'm just so sad for him tonight. We know what hes up against and its not going to be easy. Totally disappointed right now.

Holiday "Happies" in our Home

We love the holidays and make no secret about it. I think I may have told you guys a few hundred times over the years how very much I love Christmas. We don't really decorate our home with Santa, or Snowmen, or any of that type of thing. I like theme trees, but really our focus is on Christ and family and not all the other stuff. I use a lot of pine cones, berries, branches, and ever green in our home. I like to add grapevine, wood, and metals to the decor as well. I'm not sure what you would call my "style", but I like to think of it as traditional minus the whole man in the red suit thing.

We have a total of four large trees this year and two smaller trees inside the house. We also have a small tree out back on the patio and two smaller trees that sit on each side of the front door welcoming those who stop by and ring the bell for a visit.


The tree's in tonight's post are my absolute favorites. I'm going to start the holiday decor "tour" with the happiest rooms in our home this season. I can't help but smile and get excited about Christmas when I enter either of Ashley Kate's rooms. They are just SO fun!


So lets peek into her bedroom.



This is what I came up with for her room. I used some of the decorations from her 3rd birthday party and created a Lollipop tree. The window and picket fence garden are always there, but I attached a couple of lollipops to the fence and hung candy garlands from the ceiling. I absolutely adore it. She does too. She loves to lie on her bed and look at books, watch the candy garlands twirl, and listen to Christmas music. Its a really, really happy place to be.


This a little closer look. The lollipops are made out of paper plates, wooden dowels, colored plastic, and ribbon. Add a little glitter swirl and there you have a lollipop. There are a few snowflake lights(taken from our red neck Christmas decor from last year) and some glittery snowflakes. The pieces of candy were created using foam discs and plastic wrap tied with fishing line.

It wasn't as full as I wanted it to be and I really didn't want to spend any money on more holiday decorations this year so I added some pieces of red tissue paper and tucked them in the empty places. First time I've ever done this and I LOVE the way it looks. Totally did the trick.




This is Ashley Kate's play room. Simply put "the happiest place" in our home. We spend a huge part of our day in this room. Every morning she is thrilled to find the snow flakes hanging from above and reminds me to plug in her lights. We stay busy watching lots of Christmas movies, playing with puzzles, emptying out toy bins, and reading books. I always love this room, but during the holidays it takes on a whole new feel and I REALLY love it.


The snowflakes are huge. We hung 9 of them from the ceiling(always work with odd numbers when decorating:) a lesson that has served me well over the years). I so love them. I found them last year and I bought them in preparation for the hospital in case we ended up back there for the holidays. It broke my heart to spend time planning to make her Christmas special last year "just in case". This is one of those things that hurt so deeply to purchase during those scary days last winter, but at the same time made me so happy to find the perfect thing to hang above her bed. Crazy mix of emotions I was experiencing during these days a year ago. Anyway, they are clear plastic and Dave and I took a couple hours one afternoon and painted the tips of them blue, pink and green. I'm so pleased with how they turned out. Ash sure does love them.



This is a closer look at her tree. I have a love/hate relationship with this netting type stuff. It looks so great in the stores and then you get it home and this is what it looks like. Oh, well...I like it enough to leave it one there and work around it. This tree houses all of her ornaments. Each year I purchase one ornament for each of the kids that represents their interests that year, who they were, what they loved. Not sure if you can see it or not, but I chose a dinosaur for Ash this year. One day she may look at it and think "what was she thinking with this one" and then I will pull out all the pictures of her with that blue and purple "dinosaur" that she loved so well. This tree is girly and sparkly and fun. It sparkles and glows so beautifully each night. Ash enjoys lying under it with her pink puppy pillow for her naps. I love to peek in on her and see her reaching and pointing at different things she finds on her tree.


Christmas this year is the same as last, but yet so different. Ashley Kate is still in need of a triple organ transplant. She still has a piece of plastic inserted into her chest that keeps her alive. Her future is still so uncertain and they all tell us her childhood will be shortened. So its all the same. Except for the fact that I don't spend my days in fear. I don't cry every day all day. Just occasionally now. I try not to dwell on what I don't have any control over. I don't agonize over the decisions anymore. Instead I just keep waking up being thankful we made it through another night at home with her and that we are being blessed with one more day. I love her like crazy. Completely. Unconditionally. I don't allow myself to wonder about tomorrow that much anymore. I just stay absorbed in the minutes that make up each moment and do my best to fill them with all the little, every day things that make this life SO special. We laugh more than we cry. We ignore more than we discuss. We concentrate on living more than we plan on her dying.

Its a new and different place this holiday season, yet still familiar. Living with the knowledge that it may very well be her last, but not waiting any longer for the bottom to drop out from underneath me.

Grasping, holding, and treasuring all the holiday "happies" in our home. In her home. Even if they are as silly as lollipops and snow flakes.

Christmas Treasure

I know I will forever treasure the moments captured in our home tonight.

Ashley Kate fell in love with a very special rocking horse we brought home from storage this afternoon. She is head over heels in love with riding. I could have watched her ride for hours as she giggled and we all applauded her cowgirl skills. Sweet memories of our babies riding the range on this horse flooded our hearts as we sang the cowboy song Blake used to sing as he rode away day after day. Recalling how our little Allie was fast on his heels trying to climb into the saddle as he furiously rocked faster and faster. She couldn't be denied and would hang onto the tail of the horse with her chubby little hands. Blake would announce that he couldn't be a "real cowboy with Allie Girl on the back of his horse!" Oh, what memories!

We had a red, felt cowboy hat with a white drawstring that they would wear proudly as they mounted their horse. I can recall a picture of a diaper clad Allie wearing nothing but that hat and Blake's cowboy boots as she stole a ride a top his horse. Again he would proclaim, "babies CAN'T be cowboys MOM!"

And now my sweet Ashley has inherited that well loved horse. I could have never predicted her reaction. We loaded him into the car next to her as we drove home and she was smiling so wide. As I took her into the house she signed, "Horse, horse, horse" and told me to bring him in.




I totally love this picture. I especially love how she crosses her little feet under the belly of her horse! So precious!

So, I have a new favorite Christmas memory in my heart tonight. It happens to be the smile that crosses her face as she climbs onto the saddle and rides away.

Holiday Favorites

We spent some time this afternoon shooting our annual Christmas card photos of the kids. I love so much about them.

I love how grown up our kids are. So neat to see that they aren't little kids, but rather amazing teenagers.




I love no longer seeing any signs of the boy my son was, but instead looking into the face of the young man he has become. Oh how I love him. He still takes my breath away. I love to visit with him. Listen to his plans. Chase his dreams.




I love the beauty in my Allie's eyes and the light that shines on her hair. She has grown up to be so beautiful. So fun. So sweet.



I love EVERYTHING about my little Ashley.



Her long brown hair, twinkly eyes, and puffy cheeks. I even love the ornery streak that is seen on her face in almost every photograph. She was in no mood to be photographed today and gave us quite a show.




I love her new "pouty" face. Its a sight we see around here quite regularly. It cracks us up each and every time!



The photographs aren't perfect. They aren't professional. But...they are a true reflection of my three favorite people in this world and when I look through them I can't help but smile. This one is my personal favorite. You just can fake true joy and laughter! I told you Ash was a mess today. Thankfully her big brother and sister have a sense of humor.

I'll never know why He chose to bless me so. I'm so thankful to be their mom. So thankful. Can't wait to send you all the cards. I had two different styles made and I love them equally as much so deciding which one to send to who is going to be difficult. Keep an eye out for them in the mail box.

I'm planning to share some photos of our holiday decorations later this week. I know many have been asking for a while. I'll do my best to take some and let you peek into our home this holiday season. Love you all.

Sweater dress, suede boots, and a hair ribbon instead of a bow... my little girl's struggle flashed before my eyes when I came across this picture this morning. She is growing up. Despite it all...she's growing up.

How can I not see the goodness of the Lord when I look at her face?

I'm finding it a little unbelievable that we will be spending another Christmas together. A holiday at home with sweet Ashley. This year has been an amazing journey of one day at a time, not looking to tomorrow, but finding the miracle of who she is today. May God keep my eyes focused clearly on her today's and spare me the heartache of wondering about her tomorrow's.

It truly is a blessed season for our family.

Looking forward to some precious days off surrounded by the sounds of our children's laughter ringing through the rooms of this home. One more week until it all slows down and we get to enjoy the true meaning of Christmas together. I can't wait!

Hope your weekend is blessed.

One of THOSE days

Its just been...one of those days. Nothing really different happened to cause the rush of thoughts and emotions and opinion to rise up. They just surfaced today and I'm fighting back the tears as I process it all...again.

I've gone back and forth with myself as to if I should write it out or not. If for no other reason than to know that I am not alone in my thoughts. Or maybe just to get it out so that I don't feel as though its drowning me. Perhaps there are other parents out there just like me who are tired, weary, and basically ready to just accept what it is and move on with life.

I want to make perfectly clear this post is not directed at ANY one. Not at any specific discipline. I have a feeling some will take offense and yet none is directed or intended. I'm just venting. Because I need to.

Its been more years than I can count and perhaps there has never been an occasion as to which I have read any other word written in regards to Ashley Kate's prognosis other than POOR. Needless to say it stings every single time I read it. Every single time. I have been defiant at times in regards to such opinion. I have been accepting at times. I have been numb. I have been defeated. I have risen up and declared to fight.

Now I'm just at this place..."ok, thats what you have to say about her... so I'm determined to allow her to enjoy life... Period."

But...its not that easy. When you parent a child with disabilities you are automatically thrown into a whole new world. Not just the world of learning to live with those disabilities but a world where you are expected...forced...coerced...told...that she must have therapy. There I said it. This post is about therapy. In all forms.

I'm tired. Tired of all of it. Each has its place and I'm sure each discipline celebrates huge successes in some cases but in my experiences we do the same things over and over again, year after year, some with familiar professionals, others with new ones. Always searching for the answers, or progress, or "normalcy" to find out that after 6 years we are basically in the same place. I have spent years with rigid schedule and then the last year without a schedule at all. My opinion? Because its my journal and an accurate and honest account of Ashley Kate's life....not much has changed. Today I wonder if I'm the only parent out there with this experience? Am I the only one discouraged? Am I the only one who wants to look at the whole world who is telling me "she has to be in therapy" and say to them " Ummmm, NO. NO Thanks. We choose NOT to put her in therapy." Am I the only parent who feels as though this is not even an option in the eyes of the rest of the world?

I choose to allow Ash to just be Ash. She is beautiful. She is very intelligent. She is happy. What more can I honestly expect her to be. She will NEVER be normal. Its not going to happen. I could put her in therapy every waking hour of every single day of her life and she's not going to achieve that. Guess what? ITS OK.

This is what I believe to be true about Ashley Kate. As her mother and the person who spends every single day of her life with her its my opinion.

Ashley could walk. I think she could. The issue being...Ashley has no desire to walk. No want to. No understanding of why she should. So there. Until someone can give that desire to her its not going to happen. If it does I'm ok with it...if it doesn't I'm ok with that too. She is HAPPY. She is full of JOY. She is CONTENT. She is the purest form of all of these things that I have ever encountered.

Ashley doesn't talk. I really don't believe she ever will. She doesn't have the desire to do so and I have yet to find any "magic" in therapies that will give her that desire. You can sit in front of her all day long for the rest of her life and play with her and if she chooses not to ever speak then she chooses not to speak. As much as it breaks my heart not to hear her voice in my home this is the whole of it.

Ashley can't eat. Feeding therapy has never been successful and will never be without a bowel. It is what it is. Will she ever get another bowel and another chance to try and learn? I truly have no idea.

Just last week a therapist sat in our play room and said..."she should have some occupational therapy too. She would really benefit from it." I just sat there without a word to say. Yes, its fun. Yes, she enjoys it. Yes, she should probably have it. She's had it off an on for 6 years and the results are always the same. She stacks blocks, and holds crayons, and writes, and does puzzles when she feels like it. Not when she's being watched. Thats all I could think of. She has never done what they needed her to do at the time they needed her to do it. So...she fails. Every single time. Same result. With every therapist that has ever worked with her.

I guess what I'm saying is, as her mom I know there is a need for therapy and at the same time I don't see the need for therapy. Wow...its really out there now.

Today I'm discouraged. Discouraged by a world full of "professionals" who feel the need to tell me how wrong she is and that she needs to be corrected when I've come to terms with exactly who she is and I have accepted. She is in a wheel chair. She is fully TPN dependant. She can't talk. She does not eat. She is in diapers. She is tied to a drain bag 24 hours a day connected to a g- tube. Guess what? She is AMAZING and blessed and so, so, so happy.

Now its time to get her ready for therapy. Go figure.

Time of the Year

In case I've forgotten to mention this is my absolute FAVORITE time of the entire year. I love EVERYTHING about the holiday season. There is no stress found here in our home when it come to Christmas. Only peace. I just enjoy every single minute of it that I possibly can.

The lights on the tree, the smell of delicious candles burning, wrapping gifts, and listening to holiday classics make me so, so ,so happy! Ash and I spend the day wrapping and placing gifts around the tree and surprising the older kids with new ones while they are away at school. Its just SO fun around here.

Ashley Kate still has no concept that Dec. 25th is different than any other day of the year. I don't know if she will ever understand the passing of time, days of the week, months of the year, or holidays, but it really doesn't matter because every single day is a celebration to her. The joy and excitement don't come a few days a year in her world. She experiences them every single day. Oh to live a life like my sweet Ashley. She loves life. Its all so exciting to her. I absolutely love watching her eyes light up each morning as she "tells" me to plug in the trees or watching her react with such surprise each day as we walk into the play room under a covering of snowflakes that hang from the ceiling. Every day she acts as though I've just hung them up to surprise her, but they have been there for weeks! Its so funny. She is just joy. Absolute joy! I love her sooooooo much.

Thank you so very much for praying for Blake this week. He went back to school yesterday. He is healing. Still in pain from the infection, but its a bearable pain. I'm so thankful to see him smile again. To watch him function normally again. He's doing really, really well and I hope this never happens to him again. It was miserable! I had to laugh when he told me his friends were showing the pictures to some of his teachers to gross them out. I can't believe he sent them to them! I guess thats just being 16 and a guy. I think its crazy that this all started during a wrestling match with his cousins. One little scratch in some dry skin and his entire arm looked as though it was going to melt away. I'm truly thankful we are in a better place then we were earlier this week.

I hope your enjoying your holiday season. Its simply the most wonderful time of the year. May God bless you and your families today. Love yall. Trish