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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!
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