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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."

Monday, November 30, 2009

Gobble Gobble

(author warning: kelvin)

Hey folks, we just got back into town from deer hunting. We were there since Thanksgiving. I'm just throwing out a quickie-post and then Christy can put up a real one tomorrow. She is enjoying some time with her girlfriends tonight.

I can offer these updates on Emma. She had a decent weekend and mostly slept (good). Every morning around 0200 she would be in a lot of pain (bad). I got to hold her several hours each night while we slept or when she was crying. I love holding her when we sleep. I curl her up in between my arm and chest and place my lips on her cheek and hum to her. We did that from 2-4 this morning. I loved it. I am privelidged to hold her; she is so awesome.

Christy said yesterday that she can't imagine Emma loosing any more weight. She will be 4 years old in March and is down to about 20 pounds (hint: don't try to picture it). We've learned enough about Batten Disease that we can wish against something, but we won't bet against it.

Oh yea, Happy Thanksgiving, gobble gobble and all that stuff. But really, we appreciate all you blog readers and friends who support us in so many ways.

Tuesday, November 24, 2009

Thankful (updated Wednesday evening)

Mom got to come home from the hospital this morning. The doctor said the questionable stuff on the MRI was nothing more than results from aging. (whew) Not exactly something every woman wants to hear, but hey, we'll take it. I talked to Dad this afternoon and she was resting after having made the dressing. They were making the pecan pie later today. Kelvin will be happy to hear that! Sounds like it's going to be a great Thanksgiving after all. The only thing that would make it better, of course, would be seeing Emma chomping down on a turkey leg and digging in to the pecan pie Grammy made...

This Thanksgiving I'm thankful that my mom can still walk after this...

She was in a terrible car wreck yesterday. I think she's going to be okay. They are still awaiting results from an MRI. I hope she gets to join us for Thanksgiving dinner.

Sunday, November 22, 2009

Dear God...

(author warning: kelvin)

"Dear God..."

Wow, all the things we put after those words... thanks... praise... forgiveness... healing... friends names... blessings...

It is hard to imagine a word or phrase that hasn't gone behind "Dear God..." I suppose every once in awhile a new one comes along though, at least in our individual lives. Example:

"Dear God, please let this be my childs last Christmas".

Yep, I didn't see it coming either.

And then there's the stocking. Christy asked what we will do with Emma's Christmas stocking. Hey, I'm good on everything else...funeral arrangements, old clothes, pictures, you name it, but her stocking? I haven't a clue.

Friday, November 20, 2009

I read a book!

(author warning: kelvin)

We were excited to read the following quote about Batten's on a children's hospital website:

The condition is not a painful one and
the child will not be aware of what
is happening.

Uh, maybe Emma was misdiagnosed.

Tuesday, November 17, 2009

Baby's firsts and Emma

Did I mention Cora cut her first tooth last Friday? I. can. not. believe it!! She is also crawling, well, kind of crawling, all over the place, laughing, riding the little scooter car around the house with the big kids and eating more and more.

I just wish she would get the hang of sleeping through the night. Wouldn't that be nice?

On the flip side of that coin, Emma is sleeping more and more during the day, and most of the night. When she is awake she has been crying more, and I'm not sure why. Her seizures have increased and her medicine isn't coming close to cutting it. She still seems to react well to the Morphine, but I have had to start giving it to her more when she's awake. What drives me crazy is reading articles where doctors say there is no pain associated with Batten Disease. WHATEVER! Why wouldn't there be? I mean, if the muscles in your entire body were atrophied, it would hurt, don't you think? If your brain was wasting away, it seems to me like that might hurt too. If your stomach muscles were too weak to keep your bowels moving, don't you think you might have a pretty substantial stomach ache? If your body was in a constant state of stiffness much like having a charley horse and shook all the time, seems reasonable to me to think that would be uncomfortable. I just wish I could do something to make it all better. Unfortunately, Mommy's kisses are not doing the trick this time.

Sunday, November 15, 2009

"Fish On!"

(Author warning: Kelvin)

So, the fall fishing pattern is in full swing in Trinity Bay. A good friend and I went Friday and caught numerous speckled trout. I took Carleigh and Luke on Saturday, and while we didn't find the specks, they did catch a lot of sand trout. Luke even caught a 21" redfish! I was extremely proud of both kiddos. We weren't using bait, instead they were casting lures to the schools of fish under working gulls. For you non-fishermen, they weren't just casting a piece of bait and watching a bobber. They were casting Norton Sand Eels and working them most proficiently. They probably caught 10 fish apiece.

When Luke caught his big redfish it was exciting. His little Zebco 33 was whistling as the fish stripped line out. Luke had to work the fish around the boat motor as he ran around back and he fought it 100% by himself. All I did was coach him on keeping his rod tip up and to keep reeling and took the honor of netting the fish. There was another boat fishing this same group of birds, so I initially was reserved in my celebration so as to not interrupt their fishing, but once I heard them hollering congratulations we all fell into a full blown screaming and high-five session! I'm sure that a five year-old casting lures under birds had already caught their attention, and to witness his several minute solo fight against such a solid fish was inspiring for them as well. They offered more congratulations before they left.

And actually, this was not Luke's biggest catch of the day. Shortly after catching his redfish he landed one that weighed 195 pounds! Yep, on his back cast he sunk his lure into my ear. The presence of two small children saved the bay from hearing a barrage of curse words. For a couple of minutes I looked like one of those 20-somethings with a big earring in the top of my ear, only it was a pearl colored Bass Assassin and a 2-0 hook! A little work with the pliers and it came right out (sure could have used a mirror). Have a good one..and tight lines to you...

Wednesday, November 11, 2009

The Wall

If you've ever run/walked in a marathon you know what "the wall" is. Mile 20 of 26.2. You're warned not to try to compute the distance you have remaining because your body is so tired at this point, it is too hard to do simple math. Kelvin and I walked the Rock n Roll marathon in San Diego in 2001. I had trained to walk and he had trained to run but injured himself before marathon time, so he walked with me. We were warned about "the wall." Our coaches told us we would be spent by the time we got to that point and we would want to stop, but to just keep in mind the goal and keep going. They reminded us we wouldn't be able to do simple calculations or carry on a decent conversation because our mind would be so fuzzy.

It's not a marathon we're running or walking now, but I have hit the wall nonetheless. I am at my max. My body is totally worn out and my mind is beyond fuzzy. I can't do simple math or remember from minute to minute what I was talking about. My head knows I need to keep going...keep in mind the goal. But what is my goal? I wish there was something wonderful to look forward to after this fuzzy headedness, but unfortunately, there is not. I guess that is not entirely true, because for Emma there will be something wonderful. For us, it is not wonderful now, and it won't be wonderful when her battle with this devestating disease has finished ravishing her little body. I wish I could just scream until there was no voice left in me. I want her to be well. My heart is in a constant state of ache. I yearn for her laugh, her hearty appetite, her spunk. I pray and beg for a miracle healing. I know God can just think the word and she would be well. She wouldn't even have to go through physical therapy to recover the massive muscle loss her body has endured, her head wouldn't hurt from all the brain waste going away and the new cells taking their place making her head its normal size, her tummy and intestines wouldn't have any trouble adjusting from lack of functioning, she wouldn't have to squint when her eyes opened and light hit them with sights and beautiful colors she hasn't seen in over a year, and she would have no trouble getting in on the chasing games Carleigh and Luke play. She would love making Cora laugh and holding her baby sister. She would be so cute in her sweet little pilgrim or Indian outfit for Thanksgiving. At Christmas it would be so much fun to watch her crawl up in Santa's lap and hear her give him her Christmas wishes. Every once in a while she gives us an audible sound other than a cry. Her voice is so precious. Cora is starting to babble now, and I look forward to the day she is saying "mama." I yearned to hear that word from Emma.

Here are some pictures of happier days...

Tuesday, November 10, 2009

We miss you Lori

Lori, or Aunt Lori as the big kids call her (even though they never got to meet her), is Kelvin's sister, my sister-in-law. Today marked 10 years since she was taken from us. Sadly, she was murdered by her ex-husband. Today Kelvin and his mom and I had lunch with the DA who prosecuted the good-for-nothing s@b who killed her. The stories he could tell! I am just glad he has one to tell about putting our loved one's killer behind bars. I wish he could've gotten more than just prison for him, but our country's wonderful relationship with Mexico through the NAFTA agreement put a stop to that.

Since this is my blog, I think I'll take the liberty to preach a little bit. If you know someone whom you think may be in an abusive situation, don't sit by and do nothing. It may be hard, but step up to the plate and do something. If you ever hear of someone receiving adjudicated sentencing, speak out against it. Lori's killer was supposed to have started serving jail time the weekend after he killed her. Instead he killed her, dumped her body, and fled to Mexico to live the good life! There is something wrong, way wrong, with that!

Lori was a beautiful young lady. She loved her family and friends, and always begged Kelvin and me to make her an aunt. I wish so badly our kiddos could have known their Aunt Lori. She would have made such a great aunt, and she would have been totally thrilled to have been an aunt so many times over! She would have been so proud of her kids. They have grown to be such beautiful young people. I wish we had more memories with her...more hiking trips, camp outs, vacations together, water skiing, and the like. I wish I could go take her water aerobics class at thr Y again or visit one of the stores for which she was a vendor. We can only hold tight to the memories we do have, and dream of a day we will meet again.

Though small of frame
And so light on her feet
She left deep prints in the hearts
Of all she would ever meet.

Lori Leigh Dunnam
6-28-75 - 11-10-99

by Uncle Gene

Thursday, November 5, 2009

Fall Fun

Lovin this weather we've been having. It's been cool at night and beautiful during the day. We had a wonderful time last weekend. Here are some shots for your viewing pleasure...

Sunday, November 1, 2009


The other day we had a visitor. Emma's nurse called to ask if she could bring one of her friends, Cuddles the Clown with her. How precious! Cuddles has the most wonderful ministry of trying to bring smiles to the faces of those who might not have very many smiles readily available. She has all kind of cool tricks in her bag, really great animal balloons, and a fantastic "panjo..."

We all had such a good time with Cuddles. Luke was a little bit shy. I know it's hard to believe, but he takes a while to warm up to new folks. He really started liking having Cuddles around about the time it was time for her to go. We hope she can come back again.

Thursday, October 29, 2009

Pumpkin Patch

We had a good time visiting the pumpkin patch this year. I think Luke found the biggest mambo jambo pumpkin they had. It would take a month of Sundays to carve, so we had a smaller one he carved this morning...

Carleigh found the perfect one for her. I thought the green one was a pretty pick for Em, and Cora's is the smallest one of the bunch. The kids always have a ball on the barrel train. Cora is beginning to sit up and looked adorable amongst all the pretty pumpkins. Emma enjoyed being outside feeling the wind against her beautiful skin.

Tuesday, October 27, 2009

7 months old

Today Cora is seven months old! YIKES! It's flying by faster than I thought it was. So, what is the little bundle doing you ask? She is beginning to do the army crawl, rolls all over the floor, jumps like a crazy girl in the Johnny Jumper, blabs all day long, makes a spitting noise with her tongue and lip, nurses like crazy, eats pretty well, grabs for everything and puts it in her mouth, smiles at most everyone who looks at her, sucks on her little big sister's toes, holds the same sister's hand, feels at home in her big sister's arms, laughs at her brother, throws some pretty substantial fits, fights sleep with the best of 'em, likes to ride in the car most of the time, enjoys stroller rides usually, and has the cutest belly laugh you ever heard! I know I'm missing much, but that's a good summarization.

Monday, October 26, 2009

Your Hands

"Rejoice always; pray without ceasing; in everything give thanks; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18 (NASB)

If you've never checked out our sidebar, you should. There are all kinds of wonderful things and a plethora of information there just waiting to be read. At the end of the sidebar is a little thing called the verse of the day. It's really quite amazing to me that every single time I read that verse it speaks the exact thing I need at that moment. I'm having a hard time with this one. The one that says, "Rejoice always..." I can almost get the rest of it, but the "rejoice" part is throwing me for a loop. I guess I'll just keep trying. (I started this post the other day when this was the verse of the day.)

Last night, as Kelvin wrote this morning, was a rough one. Really none of the past serveral days have been very lovely. I don't know how I get through the days sometimes. It is ripping out my heart to watch Emma cry out in pain with her face twisted and anguished. I really do know how I am getting through...only God is big enough to carry us right now. These are the darkest days of my life. I guess God knew what He was doing by giving us our little surprise bundle, Cora. She seems to be the comic relief we need in this continual tragic story of Emma's life. (Well she and Luke. He never seems short on hilarity.) We are doing a study with our small group learning about the God of the patriarchs and His different names. I haven't taken the time to find the Hebrew name, but we were encouraged to give a name to what God is for us right now. He is the "God who carries me" for my life right now. There is a new song out by JJ Heller that is my new favorite. Funny how music ministers to me, huh? Click here to hear the song is you wish. My favorite line is I know You hate to see me cry/One day You will set all things right.

One day...

Your Hands by JJ Heller

I have unanswered prayers/I have trouble I wish wasn't there/And I have asked a thousand ways/That You would take my pain away/That You would take my pain away

I am trying to understand/How to walk this weary land/Make straight the paths that crookedly lie/Oh Lord, before these feet of mine/Oh Lord, before these feet of mine

When my world is shaking/Heaven stands/When my heart is breaking/I never leave Your hands

When You walked upon the Earth/You healed the broken, lost, and hurt/I know You hate to see me cry/One day You will set all things right/Yea, one day You will set all things right/

When my world is shaking/Heaven stands/When my heart is breaking/I never leave Your hands/

Your hands/Your hands that shape the world/Are holding me, they hold me still/Your hands that shape the world/Are holding me, they hold me still/

When my world is shaking/Heaven stands/When my heart is breaking/I never leave You when...When my world is shaking/Heaven stands/When my heart is breaking/I never leave...I never leave Your hands

Emma's Hurting

Emma did good for a few days(relatively speaking), but yesterday evening and last night she was in constant pain. There was a particular moan and facial expression that Christy had in the last 2 or 3 contractions during the delivery of all four children. It meant she was at her pain threshold. I recognized the sound and sight with Emma last night. Morphine isn't cutting it.

Please pray for her complete relief of pain.


Wednesday, October 21, 2009

Faith Tested?

(Author warning: Kelvin)

Has your faith ever been tested?Don't answer too quick...that's a big question.

First, let's look at what we are asking. Are we saying "faith" as in total belief in God, or "faith" in his abilities? For "tested" are we looking for an opportunity to pass or fail, or simply "tested" in a manner that makes one stronger? Who do we think is doing the testing: God or Satan? Do we really believe in having our faith tested, or did we just grow up hearing the adults say it in church?

I often hear comments about our faith being tested when people mention Emma. It seems so odd to me when people say this, but I usually just nod my head in agreement. I suppose I see it a little, here are my answers to the questions posed above.

All of us are tested in every sense of the word: does God exist, can he do what is written in the Bible, etc. Tests can be meant to prove us as failures or to make us believe God is one. So, who does the testing? I'll say Satan with access granted by God.

Have we been tested by raising a beautiful baby girl named Emma whose mind and body are poisoned by the cruelest of diseases? Are we tested in that we can mourn a child we still hold? Are we tested because we have made initial funeral arrangements for our little girl? Friends, let me be as clear now as in anything I have or ever will post on this blog. For the ever present question...

"Has your faith in God been tested by what you have been through with Emma?"

...I offer a resounding...

"NO!" Our faith has not been tested, it has been FORTIFIED!!!

Emma was not sent to test. She was sent to prove. We all despise war and the losses which come out of it. But without war, we have no heroes. We love our heroes. In her fight against Batten Disease, Emma has given our community dozens, if not hundreds of heroes to celebrate. Her work is not done yet and it won't stop for generations (feel free to take that as a challenge to outdo a child whose skill set only included saying "a", "uh-oh" and "daddy"). She introduced us to the wise words...

"We do not have a soul, but instead are a soul that has a body"

Emma is a wise soul who has taught many.

Tested? I don't get it.

Tuesday, October 20, 2009

Flashback Friday

I know it's Tuesday, but I wanted to do a Flashback Friday last week and didn't get around to it. So, here it is. I like remembering Emma when she was the spunky little thing she was born to be...

I wish I would have taken more pictures.

Sunday, October 18, 2009

Country Mouse or City Mouse?

(Author warning: Kelvin)

So, which one are you, a country mouse or a city mouse? I bet you immediately know the answer, without hesitation.

Do you favor condos or cabins? City parks or hay fields? Sushi or a pig roast? Lexus or F350? Food Network or Outdoor Channel? Tour de France or NASCAR? A walk in the park or "going muddin"? Do you have a butcher, or are you a butcher? Fine museums or a "fine" tractor? Starbucks or the old percolator? Christmas at the Galleria or the day after Thanksgiving in a deer blind? Neon lights or twinkling stars? A water fountain or a trickling Hill Country stream? Picasso or a sunrise?

Me? I am a little of both, a country mouse with a city house, if you will.

On the subject of mice, have you ever observed a mouse that recently ingested rat poison? Do you remember how they initially stumble around due to lack of senses and blindness? Next they lay down with epileptic shaking and stare into space. And you saw how they just continue to writhe in pain to the point that you actually feel sorry for the mouse. They squeak and gurgle as their intestines turn against them. Remember all of that? Welcome to Battens Disease.

A Good Thing

Morphine is a good thing. That's all I have to say about that.

Thursday, October 15, 2009

Three Magical Words

(Author warning: Kelvin)

To clarify, this is not my original saying, but I have borrowed it from a wise friend. My friend has endured the mental and physical struggles of suffering a brain injury while in his 30’s. Mentally, he is 110%, but physically he is in a constant state of rehab and takes meds to help with fine motor skills. A while back he went deer hunting with me. One evening after a couple of beers and too little sleep his meds were not very effective. He had bad tremors and needed help getting to bed. While I was helping him walk across the travel trailer, he poured out the Three Magical Words of wisdom and insight to me. They were simple words. When taken in the context of what all he has been through and goes through daily, I found them profound. He had managed to sum up volumes of doctors ledgers, numerous pharmaceutical journals, dozens of surgeries and thousands of hours of rehab in three words; Genius!

Sometimes we tend to over-analyze our situation and get buried in the details. We all do it. We look at Emma’s situation and wonder: what is the root cause of the genetic misalignment? Where did it start? Why did it develop? Why Emma? Our frustration builds. We find faith and strength. We lose it. We find it again. We wonder about the future. We feel guilty for wondering about the future. We celebrate the great friends who care of us. We hate that they need to help us. It’s a vicious cycle. So, we have found solace in sometimes just saying the Three Magic Words. It is a multi-vitamin for your emotions. It purges just as well as tears. It answers all those questions that you can’t find answers for. I think it is healthy.

So, friends, I offer to you the Three Magical Words, a phrase which transcends generation, race, gender and socio-economic status, the one that answers everything short of E=mc2, the saying which was no doubt developed by those who really knew what they were saying…




...This is bullsh!t.

Tuesday, October 13, 2009

The world keeps turning

How is it that even though I feel like our world has come to a standstill, it keeps humming along at its normal pace as if nothing is wrong? How can we still be driving places, buying things, going to soccer and gymnastics, planning the next WOW(Worship on Wednesday for kids) activity, cooking dinner or ordering pizza because both babies are crying or one is balled up in pain, grocery shopping, doing homework, taking tests online, getting donations for the school festival, working, doing charity work, worshipping the God who knows our pain intimately and sees each tear but seems silent, watching another baby flourish, and continue to do all the other things everyone does every day while our sweet angel is suffering so? I feel like I am standing on a busy sidewalk and the world around me is going by so fast it's just a blur.

Please Pray for Emma

Emma is in a lot of pain. Please pray for her.

Even though she is in the late innings of the game our faith is strong in God's ability to heal. We have not stopped praising His Almighty Power and we recognize His ability to heal anyone. We also lift a prayer of relief for Emma. Please join us in prayer that she be free of pain, totally free.


Sunday, October 11, 2009

Something funny

So, I'm reading an article the other day about Obama getting the Peace Prize, and said something to that effect out loud. Luke says, "Yay! I voted for Obama. Is he a him or a her?" at which Kelvin and I about fell on the floor laughing. So innocent!

Happy Monday!

Thursday, October 8, 2009

Just Emma

Some of Emma's favorite spots to catch a nap...

About this time last year...

This year

Oh yeah, the boppy pillow is much better

Emma's having a pretty good day today. She got up really early, around 4:30, and had a dirty diaper. After I changed her she was extrememly restless and shaky, so I gave her some of her sedative. She settled a little bit, but got up around 6:45. I was afraid it was going to by a sad day because she began to cry at one point. I think she needed a little Mommy touch, because she settled pretty quickly after I gave her some attention and went right to sleep in one of her favorite spots...the big bean bag chair. After her short morning nap, she ate well, and was pretty sprightly, so I thought I would try her in the cool bouncy activity thing.

I think she liked it. She was lifting her head some and turning it back and forth. She was still content there when her PT came, so the PT session was in the cool bouncy thing. She gave a few little grins, so I think she liked it. Afterward, she crashed out again in her favorite chair. I think it's time for a late afternoon lunch, so off we go to the high chair! The best part of the day so far was the huge toothy smile I got when I was changing her clothes this morning! Talk about make a mommy's day! She knows just the way to do it! Emma ate like a champ at lunch and after her belly was full, the nurse aid showed up to give the little darling a massage. She really enjoys those, but then, who doesn't?

Monday, October 5, 2009

Raindrops keep fallin on my head

We had a most lovely time at the lake this weekend. It rained and rained, but we were able to get in a boat ride and some fishing along with some rope swings off the deck. (Man, do I ever need to brush up on my rope swing skills!) Some very dear friends of ours gave us the keys to their adorable family lake house for the weekend, so we packed up and headed out. Friday night was beautiful sitting on the porch, watching the moon on the water and listening to the wind blow through the crunchy leaves on the huge trees which surrounded us. I felt like we were in a tree house. The next day brought rain, but we got some fun in before it came, and it didn't slow us down much, really. What's a little rain anyway? We're sweet, but we won't melt. Saturday afternoon was relaxing as I again enjoyed sitting on the porch watching the rain and listening to all the sounds it brought with it. Emma liked it too. She enjoys being outside. A screened in porch is just the way to go! The mosquitoes have been a little worse than terrible lately, so screen is good. I think the funniest part of the weekend was yesterday when I was packing up. Emma was lying on the floor on her pallet, and I put Cora down near her. Cora made her way over to the closet thing she could find to suck on, because everything goes in her mouth these days, and you'll never guess what she found...

Emma's big toe! Apparently, not only does Cora like sucking on her own toes, Emma's seem equally tasty!

Monday, September 28, 2009

The Long-Awaited Website is Here

You heard it here first, folks. The long-awaited Emma's Hugs website is now up and running and looks marvelous, I might add. In case you're new to the blog or don't remember what Emma's Hugs is, let me catch you up to speed...

Kelvin, my best friend and fabulous husband, is a thinker. Some of you are probably aware that he spent many days and nights in the Texas Medical Center when his dad was battling cancer. Many dollars were given to the parking machines during this time. It's amazing how quickly $12/day parking adds up and begins to put a strain on one's budget. Kelvin had the thought then of how nice it would be to have an organization that would help people cover the costs associated with spending any significant amount of time in the med center. Well, after Emma was diagnosed, Kelvin begin thinking again. He found a productive way to channel all of the negative energy that comes with grieving the terminal diagnosis of one's child into something wonderful. Additionally, he noticed the incredibly positive impact that Emma was having on everyone who heard her story. That influence needed an environment to thrive, and thus Emma's Hugs was born. Emma's Hugs exists to help pay for parking and food expenses for those who find themselves in the medical center for any length of time. So far during 2009 Emma's Hugs has paid for over 1,000 days of parking in the medical center. Please stop by and visit our new website for information, buy merchandise and to donate if you so choose. You can click here or go to
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