Celebration of Ashley's Life

We will be holding a Celebration of Life service for Ashley on Saturday August 31st at 6:00pm at Oakland Heights Baptist Church located at 1600 Judson Road Longview TX, 75601.  903-753-0291

If your life has been touched by Ashley's Story please join us as we celebrate the life of our Gherkin.

Our Sweet Ash

Our sweet Ashley Kate left our arms this morning and was received into the arms of the Father. 

Until we meet again my sweet, sweet girl...you were so deeply loved and so desperately wanted.  

We love you baby gherkin.

In our window...

If you were to drive down our street tonight, and past our home, you might see the soft glow of the lights from her Christmas tree in our window.

If you were to stop outside our door, and pause for a moment, you might hear the sounds of her carols softly playing.  The same Christmas carols she's been falling asleep too almost every night since we brought her home.

If you stepped inside the door of our house you would smell the sweet fragrance, you all know my favorite by now, coming from her playroom.

Those are the beautiful sights, and sounds, and smells...coming from our house on this night.

If you stayed for very long, you might be comforted as I am by the above, and my hope is that she is too, but I'm afraid you would also see and hear things that would break your heart as they are breaking mine.

Tears are falling.  Some silently some not so silently.  We all have our moments that we spend crying.  Some as we sit next to her bed.  Others while we hold her hand.  Lying next to her, listening to her every breath, causes each of us to cry.  I'm lying on the floor of her playroom.  Resting on the rug that she has spent so many hours playing on.  I look up at the ceiling and I realize how peaceful it is in this room and that brings a smile to my heart.  She's had a beautiful view as she's fallen asleep after an afternoon of play in this very room all these years.  I'm thankful we were blessed to give her that.  I can only imagine the dreams she has dreamed as she napped underneath the branches of this tree.  I smile at the remembrance of the many days I would peek in at her lying asleep in a pile of books, or dinosaurs, or toys.  

Ashley Kate is not going to recover.  The very knowledge of that fact is destroying me.  She has crossed a line and without a miraculous move of the Father's will she is going to lose her battle.  I so desperately wanted for her to show them all, the whole world, every doctor, therapist, social worker, and nurse who ever said to us the words "failure to thrive", "chronically ill", "developmentally delayed", etc. that they were wrong about her.  I wanted her story to be so different.  I wanted her to triumph.  I wanted her story to be one of survival.  I wanted to keep my baby.  I really did.  We never really accepted anything other than a happy ending.  Despite it all.  All the predictions.  All the negative.  All the struggle.  We thought she would make it.  If we took care of her, and loved her, and provided for her...she would make it.

As I listen to the struggle, and watch the changes in my daughters body, I now know that she is not going to make it.  We weren't able to do anything to save her.  Loving her is not going to make her whole.  She will never be whole.

I lie awake at night and think thoughts that I never imagined I would have to think.  I realized that once she leaves us there is no one in Heaven who knows her.  I struggled for days and days with that thought.  Who will love her...and who will greet her...and who is waiting for her there....there is not another soul whom she knows that is there.  Every person in her life whom she has ever loved is still on this side of Heaven and my heart was breaking as I struggled and searched for who I might know who is there that actually knew and loved my baby.  Two days ago it came to me...our pastor...he knew her...he loved her...her prayed for her and over her...he held her in his arms the day we brought her before the Lord...he is there. I searched and found the pictures of her in his arms as the church gathered around her to pray for her.   He knows her.  She will not be alone.  She will have someone who actually knew her and touched her and kissed her precious face.  I know it sounds crazy.  I know it does, but this is what comes across the mind and heart of a mother who is so broken that I fear will never be made whole again. My heart hurts so deeply.  I never knew I could feel such desperation, or pain, or fear.  Still I know it will become even deeper the moment she leaves us.  I don't know that I will survive.  When the pain inside of you is so deep that it becomes so real it makes you physically sick.  Have you ever been there?  Do you know what I'm talking about?

My world is a mess.  Its a mess of wanting to never leave the walls and the safety of our home again, but knowing I have to keep going out there because I have three children. If not for Blake and Allison I assure you I would never step out the front door.  Because they deserve to have us too, we keep going out there.  Its the hardest thing I've ever done...leaving Ash inside while I step out across the street to the school.  I go because I never want to look back on this time and realize that I did them wrong.  I go because I want to have no regrets.  I go because they are important, and loved, and treasured just as deeply as their baby sister.  I go because they have no choice but to go and how can I ask them to keep on if I refuse to keep on?

The days are hard.  The nights even harder.  I have no idea how much time we have with our sweet Ash.  Only God knows if and when He will take her.  The one thing I do know is that if you could look into the windows of our hearts tonight you would see that we are broken.  Shattered.  Destroyed.  Our hearts are aching.  We are so very grateful for your prayers.  So grateful.

Its Just Not Right

Its just not right to be sitting day after day, hour after hour, night after night, in a room designed to bring joy, and happiness, and hours of play, listening to my baby struggle.  Its just not right.

Its just not right to be so afraid to leave the room for fear of losing her and her being alone in the moments she takes her last breath.

Its just not right to be talking about her death and making decisions for those moments after it happens on the evening before she should be starting 3rd grade.  While others are packing their little girls back packs and anticipating tomorrow's big day, I'm packing her toy shelves and bins with more medical supplies in anticipation of having everything ready at a moments notice for whatever she may need.   My heart is broken.  Severely broken.

We stay near, lie next to her, and hold her hands constantly because there have been moments that we honestly thought she was leaving.  It is that dire here in our home.  It is so awful.  It is so indescribable.

The only things that bring me any source of comfort right now are seeing her surrounded by her things.  Lying on her pillows, her blankets, her newly painted bed.  I look at her sweet face resting underneath the tree she used to swing on and the light that shines in the windows against her skin causes her to glow.  I still see beauty.  Among the swelling, the bruising and discoloration, the wounds...I still see her.  The beautiful child that has given us so very much.  It brings me  peace knowing that Dave and I have made decisions to give her the dignity of quality rather than expecting her to endure more so that we might have quantity.  As broken and devastated as we both are at the knowledge that she's dying, we have given her our all.  We have provided a happy, peaceful, joy filled, childhood to the very best of our ability despite the pain and sickness that is stealing her from us.  She is not lying in a hospital room miles away from her family being cared for by strangers.  She is home.  Her playroom.  Her family.  Her surroundings.  That gives me peace at some level beneath the intense pain I am feeling.

Our fear in making Ash more comfortable with the use of narcotics was that we would lose her sooner.  Despite the statements made to us that it would not take her from us any sooner, it is. We have now crossed over to that place where we are making her comfortable and giving her up all at the same time.  She is losing her will.  Her fight.  She is slipping from us.  We have lost her personality and her spunk.  We have lost her smile.  Her laughter.  Her joy.  It is gone.  She no longer has the desire to play her Ipad or to sit up or to interact on much of any level.  Her only requests each day are to drive.  So we drive.  Hour after hour.  She keeps her eyes closed and seems to not even be aware, but the moment we slow for a light or a stop sign she fusses and cries and signs now.  She wants us to drive now, not later.

Along with the morphine came a lack of movement of her own which was helping her to keep the fluid from filling her lungs.  For the last 36 hours we have been battling the fluid which is making her breathing more and more difficult.  The x ray tech just left our home and we are waiting to find out if she has developed a pneumonia over the weekend or just a severe plural effusion.  Either way we will be adjusting medications tonight to try and make her more comfortable.

We have had a very, very difficult weekend and today has proven to be even more so.  As we work our way through this struggle we are trying to make decisions that all of us can live with.  Trying to make plans, trying to ease her burden, trying to protect our teenagers.  We are in the most impossible, most unbelievable, most difficult place.  We are both shattered.

Your prayers for our children as they face a new school year tomorrow with the knowledge that we are losing their baby sister would be greatly appreciated.  I pray they will be surrounded by good people who can love them, support them, and treat them with gentle kindness as they work so hard to keep the tears from falling.

Its just not right.  None of this is.

I wanted to tell...

 I began to tell her story at the prompting of my husband.

  Actually, he began to tell Ashley's story because I refused.  I could not imagine coming to this place day after day and sharing her here.  In the very beginning it was all I could do to take care of my baby and the sharing of her every day was so far from what I could conceive I had the time or the know how to do.

So...he began to write.  Small entries about what was happening every few days so that our family could turn on their computers and know how things were going.  It started in that way and for that purpose.  To inform our families about our baby gherkin.

Somewhere along the way the telling of her story became mine.  In the lonely days of transplant, in  a city where I knew no one and in the halls of hospital so far from home...it became my outlet...to write...to tell her story.  Looking back I don't think I would have survived had I not began to tell.

As I took over the telling of her story I determined that I wanted to write it...all of it..the good days and the bad...honestly.  From my experience and my perspective.  So that she would know...she would have a record...she would have her story...a testimony to share.  I wanted not only for Ashley Kate to have her own story, but I wanted for Blake and Allison to have her story too.  An honest documentation of how it was that God came into our home, our family, our lives...to work through a tiny 2lb baby girl and change us all.

I now know...painfully and tearfully...that her story will never be told by her own voice, or read by her own eyes, or held in her own hands.

As the physician left our home yesterday afternoon after examining and observing the rapid changes in my babies body, she shared with us that we have only weeks left with our precious Ashley Kate.  There will not be the 3-18 months they had previously thought.  In there best estimation, and we and they all know the only ONE who knows exactly is God, things are moving much quicker than any of us want.

I have cried.  Rivers of tears have fallen from my eyes and my heart is shattered.  I can't even tell you how I opened my eyes this morning except for the intense desire to look at the face of my beautiful Ash.  We have held her, and loved her, and laid next to her, and assured her she is treasured, and loved, and desperately wanted.  The upcoming days or weeks or whatever God chooses, for only He has the power to choose, will be difficult.  For our baby, for our children, and for us as her parents.

I shared with Dave this morning how I hope that on the day in which our Father chooses to receive my baby back to Himself that she talks His ears off.  I do!  I hope that she talks and talks and talks and that she never ceases to talk.  I hope she never stops!  I want all of Heaven to be so annoyed by the most beautiful girl who has the sweetest voice that she was never allowed to use until she arrived.  I want for her to sit next to Jesus and tell Him everything that she ever wanted to say or needed to say or wished that she could say.  I want the saints to shake their heads and smile and get a kick out of this little one who refuses to EVER be quiet.  Then I hope that she runs and jumps and dances her way into as much trouble as she can possibly find. Because after all, He created her with that ornery streak we have loved so much the last 8 years.  I hope that when we all arrive to see her there that eyes roll, and stories are told, and laughter abounds as those who have been there with her tell us all she has done since her arrival.  These are the thoughts that kept me awake through the night.

We already miss her smile.  Her joy.  Her laughter.  It has been absent the last few weeks and our home is so, so different.  She is being kept comfortable and she is resting underneath the branches of her apple tree.  I lay next to her and stare up through the branches, through the clouds, past the butterflies that dance above her, and I long to go with her.  If she can't stay with us, then we long to go to where she is going.  My desire is for Heaven to be real to each of us if we are asked to continue without our baby.  My hope is that it will be the focus, and the goal, and the ultimate reward for my husband, and my son, and my daughter, and myself for I know we will never again be the same until the day we are once again brought together as a family.  Jesus be real to us and draw us unto yourself.  Daily bring us closer to you.  Carry us as we continue each day, telling her story, writing until the day it ends with us and begins with You.

I've never published our address here in this place.  I will however give to those of you who are asking for a way to send cards and letters to our precious girl the address of our office.  Anything sent to her will be brought home to where she is.  We have received precious cards, and drawings, and letters written by your children to Ashley Kate and they hang from the branches in her playroom surrounding her with your love.  Thank you for sending them.  They are deeply appreciated and we read every word you share with us.
The address is:  101 B  Woodbine Place, Longview, Tx 75604

Your sincere prayers for my children.  Blake, Allison and Ashley Kate.  They are the ones being asked to endure the hardest of tasks.  My sweet Ashley, as her body shuts down and she prepares to leave us.  My son, as he walks the hardest of paths into his adulthood.  I can't imagine his life without the baby sister he so adores.  My daughter, her fragile tender heart, as she continues to go out everyday, putting a smile on her face all the while her heart is breaking.  It is their pain, the three of them, that is crippling me. How I wish I could spare them all the struggle that is coming.  Dave and I are broken.  We are.  We love this child as we have never loved, or ever knew we could love.  If only love could heal...for she is so deeply loved.

Theres NO Place Like Home...Details Part 4

I honestly have NO idea how many more posts there will be about the birthday party.  I'm trying to cover most of it and at the same time attempting to answer the questions that have already been asked.  Again, if its not your thing, please just skip past the posts.  I had a lot of empty hours in the middle of the night to fill and so I was able to put together several more sections of the party.  They are long... fun to look at( at least I think so:)...but long to read.

Lets move on to the characters.  I've had lots of question about who the kids were, where did I find them, where the costumes came from, etc.  I thought I'd concentrate this post on them.

First off...they were AMAZING!!!!  I couldn't have asked for a better group of young people.  They were all so good.  They not only did there tasks, but they posed for picture, after picture, after picture...with a smile and a happy heart. These kids were the BIGGEST blessing to Dave and I.

Where did we find them?  They are all good friends of Blake and Allison's.  All but one attend the same high school as our kids.  All 5 of the girls are actually cheerleaders.  Great personalities, great attitudes, and natural gifts of leading and serving.  Cheerleaders make good people!! Believe me, I've got one:)

Blake and Chris have actually played baseball together for years and years.  They are dedicated athletes and great guys.  I've always believed that baseball played a HUGE role in the raising of Blake and making him into the young man he is.  I think Chris' parents would say the same thing about him.  For those of you who have followed our blog since the beginning, Blake and Chris are two of the original Tarheels.  Our beloved Tarheels.  Great memories, great times.

Glenda the Good Witch

Glenda was played by Caraline.  She's beautiful and sweet and fun. She's been a huge blessing to our family and great friend to Blake and Allison.  She has a great personality for this character.  Her dress was ordered from the original Wizard of Oz series of costumes, but her crown was drawn, glittered, and stoned this summer by me and my mom.  Her wand was also created this summer as we made them for all the little girls who would be attending.

Dorothy

Dorothy Gale was played by Hayley.  Dave and I love Hayley!  She has a spunky personality and she is so much fun.  We have laughed and laughed the last two years as we have gotten to know her.  When I mentioned our party theme this year she immediately volunteered to help us.  Anything to help us with Ash.  I knew Hayley would be stunning as Dorothy.  I never envisioned her as anything else.  As you can see in the pictures...she was a natural Dorothy.  Again, the dress and shoes were ordered from the original Wizard of Oz costume series.

The Cowardly Lion

Emily was the Lion for our party.  Emily is gorgeous!  I had more people commenting about how beautiful she was that night and I couldn't help but notice she was THAT beautiful while wearing a brown jumpsuit!  If anyone could pull this costume off it was Emily.  Her smile is enough to make it work!  I LOVED the wig.  It totally made the entire costume.  The kids at the party loved the Lion and I know that was because Emily was doing such a great job as the character.

The Scarecrow

Allison Brooke was our Scarecrow.  She has the best personality to pull this off.  I am totally drawn to each and every image of her as the scarecrow.  She was AWESOME!  Of all the characters in the cast I knew instantly that Allie B. would be our Scarecrow.  Allie held her arms in that position for hours.  She was great.  Her fun, spirited personality really came through.  She was such a blessing to us at Ash's party.  Her excitement and willingness to do anything she could for Ashley Kate really blessed our hearts.  I loved the raffia she added to her hair and the fact that she went barefoot.  I couldn't imagine it being any other way than the way she made it all look.  I love you sweet girl.  

The Wicked Witch

Beautiful Brook was our Wicked Witch.  I assure you she is the total opposite of the character!  Her true character is so, so beautiful.  One of the things that draws me to Brook( other than the fact that I have known her since before she was born) is her countenance.  She is one of the few people I've ever known to have a true countenance that is a reflection of Christ in her life.  She exudes happiness.  I love that about her! So when I called to ask her to be the witch she said of course she would do it for Ash. Brook is the only one of our crew that does not live in Longview and go to school with our kids.  She came over from Arlington.  Let me tell you she was so INCREDIBLE.  The party would not have been the same without her character.  I went back and forth trying to decide if I wanted to include it in the party, and I am so glad that I did.

The Tin Man

Of course I could write a novel about Blake, but I know you guys read enough about this guy in the everyday posts of this journal.  He did such a great job.  His frame was perfect for the Tin Man.  Tall and athletic.  Strong.  I'm not so sure he was a fan of the silver make up, but he looked SO good!  I really appreciate his help for Ashley's party.  Blake was the muscle behind it all.  He spent every single day the week of her party loading trailers with props and building sets. He loves his baby sister with his whole heart!  How fitting for him to be the Tin man who only wanted a heart.  The symbolism was not lost on me.  I love this kid.

Mayor of Munchkin Land

Chris was our Mayor.  When I asked Blake to think of some kids that might be willing to play the role of a character for us he instantly thought of Chris.  I'm so glad he did!  I'm even MORE glad that Chris was willing.  He was so awesome.  His frame was perfect for the character.  We ordered his costume just like all the rest except for his mustache and shoes.  We made those the day of the party and they turned out so good. I was really, really pleased with our "mayor" and the way he managed Munchkin Land.  It wouldn't have been the same without him there.  

Let me add, just to answer a specific question, that the OZ back drop was a gift from Dave for my birthday.  We ordered it from Shindigz.  I like to build and paint all of our own props for Ash's parties, but I knew we would be pressed for time this summer with Blake's schedule.  Once the balloon columns were added I LOVED the way it turned out.  

So much of these posts are being written not only to share with those who are interested, but also to have it all recorded for our family.  Its nice for us to be able to look back and see how we did everything through the years.  Lots of memories are being made for our family as we plan, build, assemble, and host Ash's birthday parties.  I wouldn't trade the time we've invested together during this process for anything.  

Love you guys.

Because She's Awake...Theres NO place like home...details 3

After sleeping for 22 of the last 24 hours Ashley Kate is awake this morning (at 4am!) and she's shopping.  I'm laughing at her as she navigates from commercial to commercial(she LOVES commercials) on youtube.  She's made it abundantly clear this morning that she needs some glow pets to add to her pillow pet collection!  I guess I'll be figuring out where to order some today:)

Anyway, since we are up I thought I would work on another party detail blog and try to make some progress there.  It may be a long one because she's rested and now we are up for a little while.

I'll start with a few close ups of the decor and room layout.  Remember you can always click on these collages to get a larger, close up view of the pictures.

We created large clouds out of foam core and painted quotes from the movie on them.  We hung 12 of these large clouds randomly around the space.  We also created 6 "rainbows" by making chandeliers from crepe paper and embroidery hoops.  The streamers were left long to hang from the ceiling down toward the floor.  You can see one of the rainbows in the middle picture on the top row and again a few are seen in the large picture on the bottom that gives a view of the layout of the room.  I was SO please with the final look of the clouds and rainbows.  I think it added a depth to the space.  

If you look at the back of the bottom picture you can see the gingham covered tables where we served up Auntie Em's down home cookin.  Dinner was so yummy.  Comfort foods of fried chicken, potato salad, beans, yeast rolls, and deliciously warm apple and peach cobblers with a scoop of vanilla ice cream.  We offered tea, lemonade, and water to our guests all served from a mason jar complete with a striped paper straw in colors that represented aspects of the movie.  Red for the ruby slipper, yellow for the yellow brick road, green for the Emerald City, etc.

The two bottom pictures along with the top center show a fairly good representation of how the forest was put up.  It sat in the enter of the space and the Lion and the Tin Man could be found inside the forest.

I added a few pictures of signs that were painted to add just a little something extra to help tie in the theme. We had directional arrows that said things like, "Watch out for flying monkeys"," The Emerald city," "follow the yellow brick road", "there's no place like home", and "the wicked witch of the West".

We also painted signs for the outside leading our guests into the venue.  You could find large yellow arrows that said follow along the drive.  Another sign that said "watch out for tornadoes".  It was painted just like the one you see here in the picture that says, "I have a feeling were not in kansas anymore."

When added all together I think these elements just made the whole thing work.  I was so nervous about the whole thing not knowing if what I had dreamed up would actually work in the space.  I kept thinking it may be too much to try and work in the different areas of the movie all in the same room, but in the end I LOVED it all.   

We designed a little game for the party.  It was a scavenger hunt of sorts made out of riddles that led each of the guests to a different character of the movie.  

Blake and I worked on writing these this summer while we were on the road.  A few of the phrases I found on line, but most of it is original and the fun we had while trying to figure out what to do next is such a great memory.  We laughed a lot with some good friends late into the night while on the road playing ball.  

If your interested in seeing the whole thing just email me and I'll write them out for you.

This next picture shows a few of the little details we created for the party and our guests to enjoy.

For the boys we made axes out of foam core and tin man funnel hats.  I bought the funnels in the automotive department at Walmart for. 88 cents each.  My mom attached a stretchy cord to them and we had instant party hats.  Too cute.  For the little girls we hand glittered and stoned crowns and wands just like Glenda the good witch had.  We used very long dowel rods to make them more like the one she carried in the movie.  They were really beautiful with long ribbons and jewels attached to them.  Each of the guests were given either a picnic basket or tin man pail to play along during the party.  They followed the riddles in the scavenger hunt and approached each character to collect a piece of their favors.  I'm searching for pictures of each individual piece they were given and I'll show those in a later post.  They received a heart from the Tin Man, a basket or pail from Dorothy, the badge of courage from the Lion, a diploma of thinkology and a smarty from the Scarecrow, a lollipop from the Mayor of Munchkin land, a crystal ball from the Witch, a certificate of completion and an Emerald City rock candy.  In each basket was a gingham liner embroidered with the words "thank you very sweetly".

The riddles led the kids on an adventure to meet each character and receive their prize.  I loved the interaction between the guests and the characters.  Some characters asked them to complete a task or play a game before being awarded the item.  Others, like Glenda, they just had to figure out who she was and then introduce themselves to her to receive their crown and wand or axe and funnel hat.  It was sooooo much fun and a great way to get everyone involved in the party.

You can see a few images of the games being played in the collage above.  We put the heart back in the Tin man by playing the Tin Man Heart Toss. We took a garden shepherds hook and made a base for it so it would stand freely.  Spray painted it with silver and then we hung two pails high on the hooks.  The kids took wooden hearts and tossed them as high as they could trying to land them into the buckets.   When you successfully landed a heart into the pail you were awarded with a "heart".  A necklace for the girls and a heart sucker for the boys.  The Tin Man may also have given you a little "kiss".  Blake had a pail of Tin Man kisses to hand out(hershey kisses)  to those who came to meet him.  You can see the Lion loading a bucket of water in the top photo and then see my niece throwing it on the wicked witch to melt her in the center picture.  It was sooo much fun to watch the kids be "brave" enough to melt the witch.  They then had to grab a crystal ball from her basket and run it back to the lion to show that they found enough courage to earn their badge.  Emily aka the Lion would then pin the badge on their chest.  You can see our bucket of water was actually paper party shreds.  Allie the Scarecrow is shown handing out diplomas and congratulating the guests for being such a smarty and figuring out the riddle. I've also shown an image of the lollipops handed out along the yellow brick road from the Mayor.

These next images were captured by Katie our photographer.  I LOVE,LOVE, LOVE every one of them.  My sweet Ash wanted to play the Tin Man game and her daddy's hands can be seen holding the pail down close enough to her so she could place the "heart back in his chest".  Precious girl.  I cried buckets of tears over these images.  My favorite moment in the entire night.  She was so brave that night.  Trying so hard to enjoy what she could even though her body was struggling.  We were grateful for this moment and I'll never forget watching her play at her party.  

I'm going to finish this post with a few of my favorite pictures.  I love nothing more than to see those who attend Ashley's birthdays having a good time.  The smiles on their faces bless me so very much.  I hope you enjoy seeing them too.

These are just a few of our 99 guests who came to celebrate Ashley Kate's 8th birthday.  Each one is loved so very much.  They are precious to our family and we were honored to have them all with us that night.  

Things are different at our house

Nothing is the same anymore.

There is silence.  Hard, suffocating, silence.

There is no laughter.  No giggling.  No joy.

Dave and I can sit in a room for hours and not say anything to each other.  Neither of us knowing what to say or how to say it.

Most days I'm sad, but every once in a while we have a day where I am afraid.  Today was one of those days.  I've spent the better part of today in fear.  Its was a bad, bad day.

Nurses and physicians now come and go every few days.  Its so different here now.

I stepped across the street to watch Allie B. play volleyball tonight.  Neither of us wanting to be there.  I watched my 15 year old try to hold herself together.  Again.  She's been trying for weeks, and I'm so, so PROUD of her for all she is trying to do.  Tonight it all came tumbling out and the tears fell again and despite her best efforts to keep on doing all she does...she admits that she can't.  The stress, the pressure, the sadness, the fear, the pain are all too much.  She can't keep going.  She cries every single day.  She feels so alone in a group of people.  She is crumbling.  At what point do you say...its ok...none of this even matters...you don't have to keep doing this...I'm at that point today.  NO matter what anyone thinks, or says, or does...I'm going to do whats best for her and pull her.  Its not life or death...Ashley Kate's reality is.  She realizes that hitting a ball over a net means nothing to her anymore...her baby sister whom she left at home all day does.  My job is to parent her in the best way I can and protecting her, slowing her down, and re assuring her that its going to be ok if she doesn't continue to play is what I know to do.  Anyone who matters will understand and those who don't never mattered.  Its that simple.  Its going to be a difficult start to the school year for her being on the outside, but she feels shes there already.  She can't find the desire or the focus anymore.  Its ok.  It is.  Whatever she needs.  Its going to be ok.

I saw the pain on his face and the fear in his eyes today.  Blake sat on the edge of Ash's bed, holding her tiny hands as I changed all 18 bandages on her body.  His heart is breaking and at some point his strength will to.  He can't keep it all in.  I've seen tears slip from his eyes and roll down his cheeks, but there are no words spoken.  She asked him for lotion tonight.  So my amazing kid sat in front of his baby sister and rubbed her swollen feet with lotion.  The look on his face, pain in his eyes, brought me to tears.  I can't protect him from this.  There is nothing I can do.  He's been to hit at the cages 3 times today.  Its what he does when he hurts, or when he's angry, or when he is stressed.  He hits a baseball. I know hes struggling today because of the number of times he has left with his bat in hand.

I don't know how to do any of this.  None of us do.  Somehow I have to figure out how to be what each one of us needs.  I can't allow my family to fall apart.  The pain is real.  It is palpable.  You can feel it when you step inside our home.  Its so very real.

My family is hurting, and when my family hurts I go into protection mode.

Things are very, very different at our house.

Today I'm Thankful for...

...no rinse shampoo.

Washing Ashley Kate's hair has always been an emotional task for me.

 I've poured my heart to the Father while rinsing, brushing, and braiding her hair.  I've cried my eyes out more times than I can count during the process.  I've laughed so hard I couldn't contain my joy at the silly things she's done during some of those times too.

There is something so personal and intimate about washing her hair.  Its always been my job.  Something no one else has ever done for her.  Just me.  Just her mom.

Some days its a smooth and easy process.  Other days its been rough going as I do my best to tenderly and as easily as I possibly can remove those stubborn tangles.  Her hair is so long it easily gets twisted into knots depending on how she feels.  If she's been sick and spending most hours of the day in her bed then the shampoo process is hard...difficult...and painful.  We've cried together on several occasions.  Her not understanding why I'm hurting her.  Me not wanting to hurt her and longing for her to have the ability to understand that.

More than once I've been ridiculed on this blog for braiding her hair.  I've been told I was vain, and selfish, and called some pretty ugly names.  I've never understood people's harsh response to something I've only ever done out of love and protection for her well being.  I've often thought "if they only knew how horrible it will be the day she does wake up if its not cared for and its not tied back".  They just didn't know.  What they thought I did out of vanity, I was truly doing out of love for my sweet girl.

The last few months have been difficult.  Daily tasks and cares have become almost impossible.  Ashley's body is heavy.  Swollen and mis shapen from struggling organs and a venous system that no longer can do its job properly.  Bathing and shampooing Ash is a job.  A job that takes a lot of physical strength as well as emotional strength.  I cry my hardest tears on bath day.  Its so very difficult for everyone in the house.  As she cries and complains from the physical discomfort of being moved, shifted, and lifted the house quickly clears usually leaving just her daddy and I.

There are so many parallels I can draw from her physical battle to my spiritual life.  From the smooth and easy to the hard and difficult.  From the outside ridicule from people who just don't understand to the days that I cry out and complain because I just don't understand what God is doing in me either. I see how the "house has emptied" and yet there are those who lovingly, steadfastly, have remained to aid us in the task of raising Ashley Kate.  I try so very hard not to be hurt by those who had to step out, back up, and leave.  I focus on the ones who jumped in, shampoo dripping, tangles twisting, and have never stepped out of the room.   Ultimately, the end result is beauty.  Either way.  The hard washes or the easy.  They have all resulted in beauty.  On her head and in my life.

God never promised me it would work as well as no rinse shampoo, but today I am thanking Him for the bottle on my counter that made her struggle just a little bit easier today.  Now I'm going to reap the benefit and breathe in her sweet fragrance all day long.  God is good.  He really is.

No rinse shampoo...its a gift.  It really is.

There's No Place Like HOME...Details...Part 2

I'm slowly working my way through trying to puy these posts into some sense of order.  I thought I'd try and explain the layout of the room and the ideas behind it all in this next post.

I broke the room into 3 main parts.  Kansas, the corn field and Gale Homestead, Munchkin Land, and the Emerald City.  Here we go:)


Outside the door our guests were greeted by this larger than life mural of the hot air balloon.

On the front door hung this sign...

It was really quite perfect because the door bell was broken!

This is my niece McKenzie.  She greeted our guests at the door.  This picture shows the scale of the mural a little better than the previous one.  I used painters cloths to paint all the murals on.  This one was a 9ft.x12ft.

When you walked into the room the first set you entered was Kansas.  We built a split rail fence and fashioned a corn field, complete with scarecrows behind it.  The Scarecrow table was here in this corner.  Allie aka our Scarecrow also hung out in this section of the room.  At the other end of this wall was Dorothy's farm house.  You could find Dorothy Gale behind the fence, under the porch of the house.  Auntie Em's fried chicken, tater salad, baked beans, yeast rolls, and home made cobbler with vanilla ice cream was on the menu.  My favorite scene of the whole room was here in Kansas at Dorothy's house.  I loved so many things about this area.  I loved the bicycle.  It was a rusted treasure we rescued one afternoon in Canton and I brought it home and painted it a bright, shiny, red.  I also loved that Ashley's Greypa included her name in the wood grain he drew on the side of the house.  Just a little detail not many noticed, but those of us who knew it was there smiled every time we saw it.  The mail box was another little detail I loved.

In between the corn field and Dorothy's house the movie played on a 10ft screen that came down from the ceiling.  It made me smile.

Munchkin land was on the opposite side of the room.  It was a fun, bright,and cheery spot.  The yellow brick road was designed by my in laws.  They did a fantastic job on it.  The mural in the back I painted over the summer.  We had larger than life flower boxes with hand painted mesh flowers that wobbled back and forth on springs.  Loved the whimsy of them!  One of my favorite parts of munchkin land were the large, bouncy, flowers that "grew" along the road. They had large polka dots, stripes, and chevrons on them.   Dave welded and painted the extra large leaves they grew out of.  By the end of the night all the flowers had been picked and the kids were bouncing them along the yellow brick road.  So fun!  Munchkin land was a wonderful place to play.  The Mayor greeted all our guests and awarded them a lollipop then they were invited to "shop" back in the lollipop stand.

I used an old hutch given to me by a friend and then turned it upside down to sit at the end of the yellow brick road.  We painted it with bright colors and filled glass jars with lots and lots of lollipops.

Definitely a favorite spot for most of our guests.

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The third section of the room housed our Emerald City.  It was the only part of our entire party that we bought already designed and didn't make ourselves.  Dave bought it for me for my birthday.  I was so excited!  My time this summer was limited since I spent most of it on the road with Blake as he played ball, and I didn't think I could get it built and painted before her party.   The set was beautiful.  We added the balloon columns to give it a three dimensional effect.  They were 6 1/2 feet tall.  So easy to build.  I loved the way they added that little bit extra to the room.  In the middle of the room we set up our forest.  It turned out sooooo good.  The pictures just don't show how amazing it looked.  The trees were so cool.  We made them by taking limbs off an old tree that had been recently cut down and building a base for each limb.  The limbs then became trunks and my brother and Blake drilled holes in them and placed branches in each hole.  The final product looked amazing and so real.  We covered the bases in Spanish moss and then tossed red apples in the mounds of moss at the base of the trunks.  The Tin Man and the Lion both hung out in the middle of the forest.  It couldn't have turned out any better.  I was thrilled with the final product.

My next post will show a little more of the room decor and then I'll start sharing what we did during the party.  Game details, favors, etc.  Its going to take a while to get through all this party stuff :) I'm not sure if I'll get to it tomorrow or not.  One of our patients blessed us today with a hospital bed for Ash and tomorrow it is my project to paint, monogram, and "Ashley" it up a little bit.  I also have to fit in a visit from the nurse and one of her doctors and then attend Allie's volleyball game.  I'll get back to sharing as soon as I can.

There's No Place Like HOME...Details

This is my very favorite image of the entire party.  I knew it would be worth the wait to view Ashley's party through Katie's lens.  She did a beautiful job capturing Ashley and the details that night.  Thank you Katie for sharing your gift so unselfishly with us.  I love you sweet girl.  

I am going to attempt to show you all the details of Ashley Kate's 8th birthday party.  There are literally hundreds of photographs and hundreds of details.  I'm going to do my very best to show you the highlights, with enough of an explanation for those of you who like details, without boring everyone else to the point that they wish I'd just stop writing about her party! 

In trying to decide where to begin I quickly figured out that table themes and centerpieces would be the easiest.  So...here we go...

We had a total of 9 themed tables.  Each table featured a character or location from the movie.  My goal was for the guest to be able to identify who or what each table represented.  I was very pleased with the final product.  My mom is a floral designer and probably one of the most talented people ever in this area.  Her work is stunning and she was able to bring my ideas to life.  I could not have pulled off this party without her help.  We began designing in April and it took all 5 months to complete everything.

The themes in order from the picture above where:  The Scarecrow, Dorothy, The Wicked Witch of the East, The Lion, Munchkin land, The Tin Man, The Emerald City, Glenda the Good Witch, and The Wicked Witch of the West.

This was one of my very favorite tables.  We set up the table in the Kansas set, back inside the fence and rows of corn.  The centerpiece featured, sunflowers, wheat, and apples branches(to represent the Haunted Apples that the Scarecrow managed to get the trees to throw at him and Dorothy), burlap ribbon and table runner, rafia, and a bushel basket. The linens for this table were a beautiful gold with a burlap overlay.  Each centerpiece included a phrase from the character or theme,  This card read, "If I only had a brain".  Allie B. was my scarecrow and she was just as beautiful wearing straw as she is when all dressed up.  She took my breath away that night!

The next table was also set up in the Kansas set.  Dinner at Dorothy's house was the idea behind it all.  What fun it would be to eat at Auntie Em's!  With each centerpiece we began by choosing a central flower or item to represent the character.  For Dorothy we chose a white daisy.   This centerpiece featured the picnic basket, the signature blue and white gingham fabric from Dorothy's dress, daisies, along with blue and yellow flowers, a pair of ruby slippers(made from a pair of 2 dollar heels from the thrift store and spray glue with red glitter), toto, and a card that read "There's no place like home".  We used white linens with a blue gingham fabric piece.  Bright red charges with a white daisy marked each place setting.  Beautiful Hayley played the role of Dorothy that night and she couldn't have been more perfect!  I have some amazing photographs of this young lady with the guests that night and in every single one she is simply beautiful!  I loved the way this table and set turned out.

The Wicked Witch of the East.  The pictures don't do this arrangement justice.  It was amazing.  It all began with a red and black feather and some black, curly sticks.  It was designed in three different red and black candle holders.  The arranged flowers and sticks eventually all intertwined when set on the table.  We added the hour glass and a quote from the coroner of Munchkin land who announced, "She's not only merely dead, she's really most sincerely dead".  I loved the black and red linens.  Loved the place settings with the deep red flower and wickedly curled stem on the dark red chargers.  As you can see just as in the movie Dorothy's house landed on this witch and all that remained of her were her legs and the ruby slippers.

The Lion was so fun!  This piece included a burlap flower in a shape that reminded me of a lions mane and so that is why it was chosen.  We added some grasses, jungle leaves, and a tall brown pottery piece.  The badge of courage was attached along with a card that read "Put em up, put em up".  Sweet Emily was our lion and seriously was the cutest character!  Everyone loved and commented on how pretty she was and this girl was dressed in a brown jumpsuit!  Just proof of how naturally beautiful she is.  The linens for this table where a golden brown with a fur piece overlay.  Every table had a place setting that included a charger and a floral piece or item to adorn it.  A jungle leaf and gold flower finished off each place setting for the Lion's table.  It was centered along with the Tin Man's table in the woods surrounded by the Haunted Apple trees.

The Munchkin land table was a favorite with every one!  It all began with a huge orange flower and a butterfly pole.  We added brightly colored gerbers, some fun, unusual flower pieces, lollipops, butterflys, and hot pink shredded paper in a large terrecota pot we painted turquoise.  The card red "We welcome you to Munchkinland" and the linens were bright orange with a hot pink overlay.  Each place setting included a brightly colored charger, a huge jewel, a rainbow in a bag treat, and a flower votive filled with skittles.  So fun.  Our Mayor of Munchkin land was played by Blake's good friend Chris and he did an amazing job.  The kids loved him!  Munchkin land was the favorite spot of all the kids and its where the fun happened.  From playing on the yellow brick road, to picking huge "flowers" and bouncing them along the path, to shopping in the Lollipop bar.  So fun! So bright!  So perfect!

The Tin Man arrangement began with a single red rose.  When I saw it I immediately thought of the heart he was longing to have.  The entire centerpiece was made of metal except for the flower.  It was all silver with the only color being the red that represented his heart.  It looked so amazing.  We included wire flowers, a heart cookie cutter, two different oil cans, and a card that read "I shall take the heart, for brains do not make one happy."  The linens were silver with a bright red overlay.  Silver chargers marked the place settings with a single red rose and a tiny Tin Man's kiss(hershey kiss).  Blake was our Tin Man and his frame was perfect for it.  He was tall, and strong, and oh so silver!  The kids really had fun playing in the woods with this woodsman.  I'll talk more about the games in a later post.

The Emerald City table was beautiful!  Tall glass towers filled with emerald green stones and water made up the focus in this centerpiece.  We added one brightly colored purple flower to represent "the horse of a different color" found only inside the emerald city gates.  There were a set of glittered letters that spelled OZ and a card that read "the great OZ has spoken".  Green jewels scattered around the gold chargers and a beautiful green flower that sparkled set each place.  The linens were a dark emerald green with gold overlay and the table was front and centered by the gates of OZ.  One of my favorites!

Glenda the Good.  Beautiful table!  Beautiful arrangement!  Beautiful girl!  All the little girls LOVED this table.  The centerpiece was built around these pink lillies.  I loved them the minute I saw them.  We placed them in a crystal vase that set inside a huge, sparkly, crown.  The piece included glass bubbles, a wand, the lillies, tiny, hand glittered, pink flowers, and clear glass stones.  The table settings were silver charges with a sparkly pink twist attached to a bubble.  Glass stones and silver glitter scattered across the pink and sheer linens.  Bubbles floated overhead and sweet Caraline visited with each and every guest as they approached.  She was so, so gorgeous in her gown and tall, glittery crown.  She met each child with a smile and handed out crowns, wands, tin man hats and axes to the guests.  All the little girls were crowded around Glenda's table.  So sweet.  The card in the piece read "you had the power all along my dear".

The final table in our party was the Wicked Witch of the West.  As we all know she was on a quest to grab those ruby slippers off the feet of her sister and then off the feet of sweet Dorothy.  This centerpiece didn't include a flower, but rather a broom.  We added a hat, a piece of green cloth(representing the melted state of the witch after her run in with Dorothy) and a card that read "I'll get you my pretty."  The linens were solid black.  The place settings were black charges with wickedly curled sticks on top.  The table was set in front of the crystal ball and was periodically covered in a steamy, smelly fog that came from behind Brook. Brook was our character.  She was SOOOOO good!  In real life Brook is the sweetest, kindest, happiest, and friendliest girl I've ever known.  I love her so, so much.  She did a great job in this role.  Her expressions, her hand positions, and her words were amazing.  She made this entire table!  I had to laugh when I looked across the venue at all the families sitting at the different tables and there at this wicked table sat my family members!  Just a little something that caused me to laugh out loud that night.

These posts are going to be long.  I apologize to all of you who don't want the details.  Its kind of become tradition to share them all here with our readers and many, many of you have used them in your own celebrations.  To those who don't want all this info just please skip past it all.  I'll never know you didn't read it and it won't hurt my feelings!

I've been a little numb since the end of the party.  I struggle each year the week or so after its over until I choose a theme for the next years celebration.  This year is  very, very hard and emotional.  No one believes my sweet Ash will be with us a year from now and that is breaking my heart.  I function day to day by making it to the next milestone in her life.  Celebrating her birthday is the biggest date on my calendar and I lay awake at night dreaming of what I'd like to create.  There have been a lot of tears this past week and the emotions that I'm experiencing as I work my way through the images have been exhausting.  I may be decorating for Christmas in the upcoming days because I need a project.  I need to have a date that we are working toward in her life.  Its hard to explain, but its how I cope with this journey.  At this time I can think of nothing better than laying next to my sweet girl under the glow of the lights from her Christmas tree.  I'm not crazy(yet), I'm just coping.  So if you happen to drive by and see the lights in glowing in the play room before its even September, just smile and whisper a prayer for my baby girl knowing that she's resting underneath a blanket of snowflakes and glimmering lights:)

Thanks guys for even caring about all this nonsense, or for pretending to care.  I love you for it!

Desperate

We are desperate.

Desperate to find her.

Desperate to see her smile...to hear her laughter spill out...her joy reappear...her eyes twinkle. I fear it is lost to us forever.

We are desperate to change our circumstance...to help our beautiful girl.

I am desperate.

Desperate to spare her the suffering...

Desperate to heal her daddy's breaking heart...

Desperate to protect her big brother from watching the pain she endures...

Desperate to restore the light hearted, silly, fun personality that this has stolen from her big sister.

My heart feels such desperation tonight.  Our home is silent.  The joy is absent.  It is so very different than what we all know.

Our hearts are hurting and our spirits are broken and our baby is struggling.  Despite the comfort we try to give, despite the morphine, despite all efforts to ease the struggle of her broken body.

Please tell me how the world continues to spin, and why life goes on, and the sun still rises and sets, when our walls are crumbling?  We don't know how to do this.  We are lost.  We are broken.  We are desperate.

In the quiet moments when she finds rest, I sit near her bed, and search for the pieces of her that remain the same...the smell of her hair...the curl of her lashes...the tiny nails on her fingers...the tip of her nose...these are the things that remind me she's still my baby...she's still her...she's still Ash...and Oh how I love her.

The prayer requests are many.

Her ears.  Her mouth.  There is a horrible ulcer inside her bottom lip that is causing her so much pain. Her swelling.  Her weight is up 12lbs from fluid and moving her is so, so difficult.  Breathing is so hard for her.  The lasix isn't helping.  The left side of her body is swollen, almost tripled the size of her right side.  Her neck, shoulder, breast, abdomen, thigh, knee, ankle, and foot.  Its miserable.  The skin is stretched so tight it is glossy and red.  Her spleen.  It is an enormous source of pain for her.  The size of it is massive.  She is uncomfortable.  Her itching.  She currently has 14 self inflicted wounds on her skin.  Two of them are grossly infected.  She claws at her skin all through the night and when I check her she is covered in blood from scratching so deep.  The meds help a little bit, but not enough.  Its a huge battle trying to keep her safe from herself.  There are many, many more requests, but your prayers for any of these would be so appreciated.

I do take comfort in knowing that she is feeling safe here in her home.  I see it in her eyes.  She knows she is home.  We currently have three beds for her.  One in our room next to our bed.  One in her own bedroom.  One in the play room under her apple tree.  She requests when she wants to be moved from place to place.  We spend most nights in our room then move to the play room bed for the daytime.  It is cheery, and happy, and filled with beautiful things.  The sunlight shines through the windows.  She occasionally naps in her own bedroom.  She finds comfort being in there mainly because I think she knows it is her own space.  Dave is searching for a hospital bed for her which would make it easier to move her up and down and change her positions as she sleeps.  The threat of pneumonia is huge and we are working to keep her free of it.

We still spend three to four hours a day driving around town.  Its one of her few requests and I can't deny her the freedom of it.  Moving her in and out of the car has become very, very difficult and I can no longer do it alone.  Most of our drives take place after Dave has come home from the office and of course on the weekends.  


Every day we wake up desperately hoping for improvement.  Even in the smallest amounts to allow us to continue to find hope.  We love on her.  Kiss her a hundred times a day.  Lay next to her.  Sing to her.  Pray over her and search for any way in which we can make her feel more comfortable.

 She is loved so deeply.

 Wanted so desperately.

Thank you for continuing with us.  For your presence in this place.  For your love, concern, and kindness.  Thank you so very much.

Just a Peek into Last Week

I'm going to share just a few images, a little peek into Ashley Kate's "There's NO place like home" birthday party.  I'm hesitating to share too much since I'm waiting for the professional images to be sent.  I know sweet Katie captured some amazing shots and I want to share those with all of you.

There will be a detailed post coming up in the future.  I'm hopeful over the weekend I'll take a few moments and work on it, but this morning I thought I'd show you just a small glimpse into what we prepared for our sweet Ashley Kate and those who joined us in celebrating her birthday.

It was an amazing party.  One of my all time favorites for sure.  My only regret is that Ash was not feeling very well and couldn't really enjoy it.  If only we had celebrated her 8th birthday back in March or even May then I think it would have turned out differently for her.  I'm amazed at how quickly things have changed and how different life is for us all now.

Another incredible cake creation from my very talented sister.  She seriously blesses me each and every year with what she designs for Ashley Kate's birthdays.

The cast and stars of our little party.  We were SO blessed to have this amazing group of young people at Ashley's party.  They made it so fun for all the kids.  It would not have been the same without the characters.  Thank you, thank you, thank you for all doing such a great job!  Every single one of them was absolutely perfect and in character the entire time.  Simply amazing.

 My big kids went above and beyond!  They were so great as they played the rolls of the Tin Man and the Scarecrow.  Allie B. was so adorable and I over heard so many guests commenting on how good she was with the kids.  I love this girl so, so much!  She is a blessing to our family.

Each table was designed around a character in the film.  This was Dorothy's table.  It was sitting in the Kansas set.  I thought it might be fun to have dinner at Dorothy's house and so this idea spread throughout the entire party.  You were welcome to sit in Kansas, the Emerald City, the Scarecrows field, Munchkin land, Glenda the Good Witch's table, the Haunted Apple Tree Forest with the Tin Man or Cowardly Lion, or with either of the two Wicked Witches.  It turned out to be really fun.

Mrs. Gulch's bicycle. Made me smile:)

Every table had a large centerpiece designed to represent a part of the movie.  This was the Munchkin land table.  One of my absolute favorites.  My mom designed and arranged each centerpiece.  Her work was stunning!  

I love this image of Blake as the Tin Man with my niece Katie Bug.  He worked his tail off that night lifting little ones up to put the heart "back in his chest".  I love this big guy and his ability to be and do almost anything.  His heart is as big as his body!  He loves his baby sister and because of his love for that little girl he was an amazing Tin Man for her party.  

This is just a small peek into the party.  I will go over in detail all the many parts.  I don't know if I will share any pictures of Ashley Kate.  She doesn't look like herself anymore and it so very hard for me to put images of her out there.  Just know that she was there, she did as well as she could that night, she grinned two times that we saw, and I know she knew it was all done for her.  I'm so proud of her and how she hung in there.  We celebrated her 8 years with our families, our friends, and our sweet girl.  It was a blessed night.  

So many of you are asking day after day about her party and I want to share it all.  Its just so overwhelming right now, but I promise I'll start working on it.  I love that you are so interested.  Its just another way you've shown us how much you care about our baby gherkin.  Thank you.