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Friday, December 25, 2009

Major Downer

One of my favorite parts of Christmas morning is having the camera ready to capture the kids' expressions of surprise and excitement when they are told it's "time" to come down stairs and into the den where all the presents are. This morning around 5, after going to bed around 2, I hear Luke calling me asking if it's "time." I think I was nursing (seems that's all I do at night lately), so Kelvin got up to explain to the big kids that it was still night time and they needed to go back to bed. He then informed them we would let them know when it was time to come down. A little before 7, I got up. The big kids heard me and started coming down the stairs. I told them it would be a few more minutes because I had to change diapers, but they could wait at the top of the stairs. After everyone was changed, Kelvin was making coffee, and I was turning on the tree lights and getting the camera ready when I overheard him talking with the kids about presents. They were all giddy asking if there were any presents, and Kelvin peeked around the corner then looked back up the stairs at them and explained that yes indeed there were toys. Then I thought it was odd that Luke asked if he had a bike, because Luke didn't ask for a bike for Christmas and had never mentioned it before. My curiosity was peeked and suspicion that they had already spied their gifts started to set in. My suspicions were confirmed when I noticed Carleigh's Raggedy Ann doll next to her "Santa" gifts. At our house, "Santa" gifts are left unwrapped. Needless to say, the doll was not there at 2 this morning when we went to bed. I showed Kelvin, and he began to question the kids. Sidenote…Just before he told them there were toys for them, he had asked them if they had already been down to look, and both of them said they had not. So, now he questions them again. Carleigh never bats an eye, looks him straight in the face, and says, "no." Luke hangs his head and admits they had been down earlier, but confesses that it was Carleigh's idea. My heart sunk. Not only had they been down and ruined the surprise, they had lied about it too. Kelvin told them to stay upstairs and we talked about what we should do. We decided to take all the "Santa" gifts out of the den and only leave the gifts from us. We got the camera ready and told them they could come down. They came barreling down the stairs and when Kelvin gave them the okay to turn around and dig in, their faces said it all.

(sorry the sound is so bad.)

Luke questioned where his bike was, but after her initial face of confusion, Carleigh hardly let on that she was missing anything at all. So, Christmas morning was not as cheery for me as I would have hoped. The bright eyes of excitement and surprise I craved from my big kids to cover over (if ever so briefly) the dark whole in my heart were missing. Emma was awake, which was nice, and Cora was adorable with her gifts. We haven’t quite decided exactly when we will give them their gifts. Of course, they got so much from us and other family that they really don’t need anymore, but that is beside the point. This will be a Christmas morning I won’t soon forget.

Last night we decided to set everything out for them this morning (Saturday) with a note from Santa that told them telling the truth is always the best idea and not to ruin surprises. They were so excited when they came down and saw all their Santa gifts.

Thursday, December 24, 2009

Our God is an Awesome God

(author warning: kelvin)

Wow, what an awesome God we serve!
The God of Abraham; The God of Jacob; The God of Isaac!
Our God!
The One who heals; The One who saves; The One who protects!
Our God!
I have but only one sick child; He has them all.
My heart is heavy with sadness; His carries the weight of the world.
I hurt for Emma; He hurt for the first ill child after sin entered the world.

Emma has touched thousands of lives, more than most do in an eighty year span. But that doesn't begin to justify her illness in my mind.
I will stand before God one day and he will reveal to me how he tried so hard to bring her situation back towards his original perfect plan; the pre-sin plan.
It will be incredible; I will be speechless as I fall on my face in praise to his mightyness.

He will reveal the trail of influence that Emma had; how it went from mother -to child -to teacher -to brother -to co-worker -to pastor -to blog friends -to father -to uncle -to stranger at the store -to cancer patient -to doctor -to nurse -to grandmother -to unknown e-mail recipient -to another state -to another continent -to another generation and started over a thousand times again -and again -and again...

And while seeing this revelation a beautiful blonde hair girl will run and jump in my arms. We will look back at the flash of time we spent on earth and it will seem like a foggy dream from long ago. Then we will look forward to an enternity of perfect health and laughter and we will sing praises to God as loud as we can...together...and run...and laugh...and dance...

As I recall that I can not remember what gifts were given or received last year, let us all remember the reason for the season...for unto us a babe was born...God is good.

Merry Christmas!

Tuesday, December 22, 2009

Merry Christmas!

Love, Kelvin, Christy, Carleigh, Luke, Emma and Cora

What do you think of my photo editing? :)

We hope you all y'all (we're from Texas, for cryin out loud!) have a very Merry Christmas and a happy and blessed New Year. We're hoping 2010 is a bit kinder than 2008 and 2009 were. Thank you again for all the love and support you have shown our family through the past year. It would have been much more difficult getting through the days without the kind words you sent our way. We covet your prayers, especially for Emma, as Batten Disease continues to steal life from her daily.

Below is a YouTube creation of a song off the new Chris Tomlin Christmas album, Glory in the Highest. It's called "Winter Snow." I really like it. Hope you enjoy it too. Merry Christmas. (Don't forget to pause the music at the bottom of the blog)

Sunday, December 20, 2009

Thank You

I just want to say I have the best blog friends in the world. You all are so sweet to read the blog and leave such precious comments. Thank you! You are such an encouragement.

Last night Cora climbed her first stair! She is not even 9 months yet! She doesn't have a true blue crawl down yet, but she can get around the house super quick. The other day she scooted all the way across the den and was at the stairs before I realized where she was! It's baby gate time again. Maybe they have one now that fits my staircase. It's extra wide, so we had to rig a gate when Emma was climbing stairs to keep her from going up and tumbling down.

(I didn't realize I had the wrong date on our camera!)

I can. not. be. lieve we only have 5 days until Christmas! I always seem to rush around the last few days before the big day getting gifts. UHG! One year maybe I'll get it together and be finished before the last few days are upon us. Oh well.

I hope this week finds you well and able to enjoy the reason we celebrate. "But the angel said to them, 'Do not be afraid; for behold, I bring you good news of great joy which will be for all the people; for today in the city of David there has been born for you a Savior, who is Christ the Lord. This will be a sign for you: you will find a baby wrapped in cloths and lying in a manger.' And suddenly there appeared with the angel a multitude of the heavenly host praising God and saying, 'Glory to God in the highest and on earth peace among men with whom He is pleased.'" Luke 2. He is Messiah, God with us. Even though my faith has been shaken, I believe. I know the Lord Jesus is carrying me (us) through this valley. I know he understands our pain and cares about the things that are hurting us. I am so very greatful He came to earth as a baby, so common and touchable. He is our King. The one who saves. Glory to God in Highest!

Friday, December 18, 2009

Angel Under the Tree

Here is our precious little angel girl sleeping peacefully under the Christmas tree.

She looks so peaceful, almost as if nothing is wrong. Oh, how I wish. Wouldn't it be nice if we really got to make a Christmas wish or tell Santa what we wanted for Christmas and it came true? Oh, how I wish there were no such thing as Batten Disease, that no child had to suffer. How I wish for a miracle healing for Emma. How I ache for her to talk and laugh and drink hot chocolate and enjoy this Christmas season. How I yearn to see her face light up when she sees the Abby Cadabby doll I found today to replace hers that was lost in the hurricane last year. How I wish I could go shopping for her and buy things a 3 1/2 year old little girl would love. I wish shopping this Christmas was fun and not heartbreaking. I wish I didn't tear up driving down the street thinking about Emma and wanting so badly for her to be well. How I wish things were just our normal crazy, bustling house with four kiddos running wild, chasing each other, wrestling around, going up and down the stairs. For now, I will wish and pray.

Here is a picture of our den this year at Christmas. What does yours look like?

Here are some sweet pictures of Carleigh and Luke with Santa. We were at a family Christmas party of some friends of ours, and they invite Santa to come in his sleigh every year. He gives all the kids a gift (moms and dads help out a little with this)and takes them for a ride in his sleigh. Luke was so mesmerized with this man. He didn't want to let him out of his sight. It was very sweet...

The other night we loaded everyone up and went to visit Santa at the mall. He was so sweet and patient with the kids and showed such concern about Emma. I like the picture we had made...

Saturday, December 12, 2009

Loss for Words

Have you ever been at a loss for words? Has anything in your life been so overwhelming, so hard to wrap your mind around, so totally and utterly devestating that you couldn't find words to describe it? I would have to say I'm there. I don't know what to say. The blog world is one of my favorite places to go. There are so many wonderful, encouraging people out there, so many interesting and funny blogs, so much to read and enjoy, but lately, I haven't had the energy, or the brain power to get on my laptop and read much, and I certainly haven't been able to write anything in quite a while.

I'm just struggling with the fact my third child, my darling little girl Emma, is wasting away before my very eyes. With each decline we've seen over the past year and a half, I've wondered how much worse things could get for her. We've watched her lose the ability to eat, drink, walk, see, clap, play, laugh, roll around and anything else a small child does. The other day I mentioned to Kelvin that I couldn't imagine her getting any thinner or much worse, all the while remembering that I have said or thought the same thing once or twice before. I hope we don't see much more of a decline. I don't know if I can handle it.

Thank you for your continued prayers. This season is bittersweet. I love all things Christmas...the lights, the smells, the flavors, the sounds, the wonder of it all. The incomprehensible fact that God became man and dwelt among us...Emmanuel. I love looking at lights, drinking hot chocolate, singing Christmas songs, giving gifts, watching the delight and twinkle in our children's eyes, but this year one pair of eyes won't have very much twinkle, and there won't be much delight showing on her sweet face, and that makes it hard to enjoy all the wonderment of Christmas like before.

I guess I wasn't at as much for a loss of words as I thought I was...

Monday, December 7, 2009

Vote for Us and BDSRA

Please take a moment to vote for Emma's Hugs

and Batten Disease Support and Research Association

If you don't know about our charity, check it out here. Check out BDSRA here.

Hope you're having a great day. I have been blessed with many phone calls, emails and facebook comments with beautiful birthday wishes. They all make me feel so good. As I blow out my 20 something candles on my birthday cake, I wish with all my heart that Emma would be well.

Tuesday, December 1, 2009

Night before Christmas (Dunnam Version)

(author warning- kelvin)
Have you ever heard a song, poem or story that you liked, but it just didn't quiet fit your circumstance? Have you ever wanted to amend the song or story, sort of like that C&W song "Bar light, bar bright, first bar I see tonight..."? Anyhow, I recently heard a reading of Night Before Christmas and had a little trouble relating to it and decided to pen a Dunnam version...

'Twas the night before Christmas, when all through the house

Not a creature was stirring, except for one shaky mouse;

The stockings were hung by the chimney with care,

In hopes that a healing soon would be there;

Emma was laying there in her bed,

With her shrinking body and ever-small head;

And mamma up worrying, and I in the sack,

Both so longing for a long winter's nap,

When across the room there arose such a clatter,

I sprang from the bed to see what was the matter.

Away to the crib I flew like a flash,

Tore open the sheets and threw up the sash.

The lowly moan from the mouth of the babe

Told of the pain from which she must be saved,

When, what to my wondering eyes should be seen,

But a tiny syringe full of Morphine,

With a steady hand and all sleepiness gone,

I knew in a moment it must be her Mom!

More rapid than eagles her remedies came,

And she whistled, and shouted, and called them by name;

"Now, Morphine! Now, Valium! And Klonopin!

On, Prevacid! On Codeine! And Zonegran!

Reach for the tablet! Grab bottle and all!

Seizures dash away! dash away! dash away all!"

As dry leaves that before the wild hurricane fly,

She dispensed the meds and ceased the cry,

So away with the shakes, and the cries of pain too,

Emma lay quietly as new morning dew.

And then, in a twinkling, I heard in the kitchen

As she prepared the next round of meds she’d be needing.

As I drew in a breath, and was tempted to follow the sound,

In the door came Emma’s Mom with a bound.

She was covered in worry, from her head to her foot,

And her clothes a second-thought as she reached for the Book;

A bundle of tears she tried to hold back,

And she looked like a dam just before it would crack.

Emma’s eyes -- how they once twinkled! her dimples once so merry!

Her cheeks were like roses, her nose a cute cherry!

Her sweet little mouth drew up like a bow,

Now the wings on her back are as white as the snow;

She was once bubbly, but now not her old self,

And I try to be strong, in spite of myself;

A wink of her eye and a jerk of her head,

And again we heard the moan we so dread;

We spoke not a word, but went straight to work,

And filled all the syringes to battle Myoclonic jerks,

And clinching a fist on the side of her face,

And giving a cry, to tell again of the pain;

Emma sprang out full body, stiff as a board,

With muscles that appeared to be no more.

Then I heard her exclaim, through the screams of her fight,

"Merry Christmas to all, and to all a good-night."
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