Tuesday, June 30, 2009

Tuesday

It's another hot one around these parts! But hey, I'm not complaining, because at 95 degrees, it was almost 10 degrees cooler than the past few days have been. Small blessings are good.



Not long ago I gave you some of my favorite things. Here are a few more (totally random, of course) of the things I love...

  • the new Organic Wear Natural Origin Super Fruit Lip Gloss in Super Berry by Physicians Formula
  • thunderstorms at the end of a hot day
  • Emma's slight smile
  • Cora's voice
  • quiet house after a long & loud day
  • okra
  • good book
  • good friend

A few of the things I hate...

  • Batten Disease
  • long lines when I'm in a hurry
  • being frustrated with my kids
  • unorganized house
  • disrespect

We had some great pictures made last week by my good friend, Janey. I got them back today. Can't wait to show you tomorrow.

Sunday, June 28, 2009

Happy Birthday

Today was the birthday to some very special people in our lives. Happy birthday Marvin and Lori! We miss you like crazy and wish you could've been here for us to have a party and share strawberry pie, cake and rocky road ice cream.



We were at my mother-in-law's house yesterday, and the whole day I kept thinking Marv would come around the corner or out of the bedroom door any second. He was such a great father-in-law. It's been a little over a year since he passed away, and I still can't believe he's gone. He was so full of life...the Energizer Bunny. I miss his energy, the way he loved to eat, the good food he cooked, and the way he loved people...especially his family. I could go on all night about what a wonderful man he was.



I think about my sister-in-law, Lori often too. I wish she could've met our kids. I think Emma looks just like her. She was so beautiful...blonde, cute little build, pretty lips. She was always teasing us about having children, and I hate it she's not here to enjoy them now. She loved her own kids so much, I just know she would've been a fantastic aunt.



I know our dynamic duo is having a ball today. I'm sure they've had their fair share of strawberry pie (probably the best ever), cake, and rocky road ice cream!

Saturday, June 27, 2009

Three Months Old

Cora is three months old today! Somebody needs to let me know how to slow this train down !


Cora is a delightful little baby. She has started smiling all the time, unless she is sleeping in her swing, of course, which she does for several hours a day! She was in my sling facing forward the other day when I was feeding Emma, and Cora just smiled and smiled at her big sister as she ate! It was so sweet. She has started laughing too. My sweet friend Dee came by to visit the other day and Cora laughed out loud for the first time! Precious! There's nothing sweeter than baby noises. She loves getting her diaper changed. She just smiles the entire time...melts your heart. Here are some pictures of her playing on the playmat. She's starting to reach out for things now too. She has mastered the art of hitting or taking her pacifier out of her mouth...looking forward to the day she learns how to put it back in. She probably would like to be a thumb sucker, and as cute as that is, I believe it's easier to break a pacifier than a thumb, so we keep putting the paci back in after she knocks it out!



Put 'em up!


Cute little piggy toes!




Happy 3 month Birthday, Cora!

The big kids had a great time yesterday, for a few minutes anyway, at the spray park with my MOPS group. I think we stayed a whopping 30 or so minutes. I was so proud, as was Luke, that he got his head and face wet! Small steps, people, slow steps...

My little mermaid...notice the new bangs? She loves her new "do".


Our friend Noah
What a champ! Water in the face and still goin' strong!
Hope you have a great weekend!

Thursday, June 25, 2009

Splishin & Splashin

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We had a great time in the pool! I think Carleigh might turn into a mermaid! She's loving swimming this year! Luke still isn't real keen on putting his head in the water, but he's coming around.

Here are the cute shirts we made today. I don't know where Luke put his...

How long has it been since you played in the rain? I don't guess I could say I played in it today, but I did get soaking wet. We got a good little thunderstorm today and I ran out to put some buckets out to catch the water so I can water my plants or the cracked ground from all this 100 degree heat we're having. It's nice to have a good rain after such a hot day.

Tomorrow is a day at the splash park with my MOPS group. I'm looking forward to seeing all my MOPS friends again. Tomorrow night is my neighborhood Bunco night! Whoo Hoo! I hope I win! Last time I got a prize for losing the most!

Have a great day!

coming and going and more

Am I the only one who feels like she can't get anything accomplished? There are just not enough hours in a day! I am catching myself coming and going. I'm keeping the big kids pretty busy so as not to hear fussing and fighting. Yesterday we went swimming at friend's house. It was fun playing in the pool with them. We then ate lunch while waiting our turn for the kids' haircuts, came home to change clothes, went to Toys R Us for a prize for Carleigh for making straight A's on her report card for the WHOLE year, and for Luke accepting his bribe and getting a trim without complaint or whine. (Sometimes you just gotta do what you gotta do!) Came home, left again to go to the grocery store, came home, threw some dinner together, shoved it in everyone's mouths, changed and got ready for family pictures...say cheese! Whew!

Today we are painting our very own 4th of July t-shirts! Stay tuned for pics of our creations.

Hope you liked the slide shows from days gone by yesterday. Every time I look at pics from the past I'm reminded how quickly time flies. I hope we're building memories with our kids, but more importantly, instilling the things that are most important in this life to prepare for the next one.

Do you realize it's hotter than blue blazes out there, people!?! My thermometer was reading 102 degrees. That's just insane! It's only June for crying out loud. I thought my legs were going to catch on fire in the parking lot yesterday at the grocery store. I'm gonna start praying for some rain. My poor little plants are starting to wilt.

Do you ever feel like someone is avoiding the subject sometimes...like all of this fluff is really nice, Christy, but how is Emma? Or you and Kelvin? Or the kids? Well, Emma is not all that great. I hate that she is not getting to enjoy the summer fun with the rest of us. She can't be outside in the heat because of the medication she's taking. Her body won't cool, and she will overheat. So, no swimming, no spray parks, no zoo for my precious baby girl who is fading before my very eyes. No sweet smiles and silly laughs, no bouncy three year old running around chasing her brother and sister or holding her new sister, no tiny little voice discovering new words and asking endless questions. There are only cries and silence. She seems to be uncomfortable a lot of the time. Her lack of movement contributes to constant battles with stomach issues. We had to increase her seizure med because she started having them again the other day. She stays up late and wakes up early, but lately has been sleeping for several hours at a time.

As for me I just want to scream or cry or both. I know there is no use in asking why. My finite brain is too small to understand. I started writing an email to a blog friend the other day...

I agree that my relationship with our Lord tends to grow when I face a storm. Is this really a good thing? I mean, why can't I grow closer and seek out a deeper relationship with our precious Father and Savior without the storm? Do I? Maybe I do, and that time is just preparation for the storm, and the storm is where I cling to the Savior I have grown to love before the storm. I don't know for sure. All I know is that I need Him to hold me and take away this pain...her pain, my pain, our pain...and I'm glad He is carrying the load. Our precious Emma, for whom you have prayed before, is suffering so badly right now. This horrific thing called Batten Disease, is taking over her body, stripping her from our arms on, what seems like, a daily basis. I want her to live again whether it be here, where I pray for a miracle healing, or in Heaven in the arms of Jesus where she will have a new body free from Batten Disease. I want that for her, but I also want the torture I'm facing as a parent losing her child to stop. I feel like I'm on the verge of tears every second of the day. Some days they flow freely, others I'm too tired to even cry. My heart is ripped out when I hear her cry out in what I can only assume is discomfort or pain. I HATE this! Does my child, His child on loan to me, really have to struggle with this awful disease for me to draw closer to Him? I hope not. I understand we live in a fallen world and horrible things will result from this fall, I'm just struggling with the fact that our baby girl is the one who is having to go through the horrible thing. So I don't know if I can praise Him for this storm. I will just try to remain faithful to praise Him in this storm.


The other children are struggling too. We have found a counselor whom I feel sure will help them sort through this confusing time. Of course their struggles manifest differently, but they have begun asking more and more questions, so we are getting some help answering them the best we can.

So, there you go. Probably more than you bargained for on this hot summer day. We covet your prayers. Thank you for standing in the gap for our family right now.

More sweet memories...


Tuesday, June 23, 2009

This Day Yesterday I Thee Wed...

I'm always a day late and a dollar short. I meant to sit down all day yesterday and write this post, but I never got around to it.

This day yesterday 18 years ago I married my friend. We got married when we were ten, because, good golly, I am certainly not old enough to be married THAT long! Seriously though, we were 18 and 20. What were we thinking? I'm so glad we have the hand of God on our marriage. I realize the odds were against us...good thing God is with us! We are very happy. I don't know how I would do life without Kelvin. He is my rock. I love him more today than I ever have. He has the best personality...so funny! He also loves me despite myself. He loves God and loves our children. We are a team. We made a committment to each other those many years ago that the "d" word wasn't an option. I'm so glad we did. With that off the table, it makes the struggles and squabbles so much less scary. So many people say their vows, but when the "worse" part comes from "for better or worse" they throw in the towel. It's so sad. But me and Kelvin, we're like peas and carrots (thank you Forrest.) I think we've seen some of the "worse" parts of this life, and I can't imagine going through all of them without Kelvin. I thank God for this precious gift of marriage and the wonderful man He blessed me with. Kelvin shows me love in so many ways...from the sweet words he showers on me to the sweet kisses he gives (to which Luke covers his eyes and says, "GROSS") to doing the dishes or making us fires in the firepit so we can roast marshmallows. He does wonderful things for me like send me roses or give me beautiful and sentimental gifts after the birth of each child. We enjoy our time together. We like to spend time outdoors as well as at places like the museum. We dream together.

Here is one of the most precious things Kelvin did for me...

Our first date was homecoming, October, 1987. The slide show below shows pictures from Saturday night, October 26, 2007, when Kelvin totally surprised me with a date to Ross S. Sterling High School's 2007 Homecoming to celebrate the 20th anniversary of our first date. He provided a driver to tote me around town to get a pedicure, an updo and a new dress at All About You for the occasion. When I got home, our parents showed up to help celebrate and take pictures, just like we did 20 years ago. He went to grap a quick "shower" and came out dressed in a tux, and then we toasted the evening. A few minutes later we left in a white stretch limo!! We got to homecoming (which he had to get special permission for us to attend) and the sponsors told us our tickets were complimentary, and the picture man took us to the front of the line and told us to choose whichever package we wanted on him. We danced a few songs, then left for dinner at Rainbow Lodge where they had spread rose pedals on the table. We ended the evening at the Lancaster Hotel in downtown Houston with chocolate dipped strawberries and roses in our room. Kelvin is a gem! I couldn't have imagined such a wonderful evening. I felt like a princess. I will never forget my special moment in time.



I have found the one whom my soul loves...

Sunday, June 21, 2009

Like my hat?



Isn't she precious?!

Hope all you dads are having a great Father's Day.

Saturday, June 20, 2009

pickin' berries

The big kids went berry picking yesterday. They had a good time for all of five minutes. It was about a million degrees outside in the shade, and another group got there before ours and scored all the blueberries! Oh well, they still had fun, and brought home some yummy blackberries too!





We went to a super cool splashy pool thing the other day too. If you're gonna be out in this heat, it better involve water for this sweet thing to get out in it. I might melt ya know! The kids had a ball! I loved swimming when I was little. I could stay in the water for hours and never be ready to get out and go home. I always wanted a pool. Maybe one day... (of course I forgot the camera!)

Emma wasn't real keen on the whole pool thing last year, but we'll try again this year. I hope she enjoys it. She hasn't had a very good couple of days. We've had some late nights with several interruptions throughout the night. I'm hoping tonight will be better.

Wednesday, June 17, 2009

Wish I May Wish I Might

Make a Wish...

Heard of it? I'm sure you have. It's a precious organization. They grant sick kids their wishes. Kids who are diagnosed with a terminal illness. Kids who would love to go to Disney or have their own swimming pool or be a police officer for a day because that's what they wanted to be when they grew up...and they probably won't grown up. So Make a Wish is contacted and waves their magic wand, and poof! the child's wish is granted! It's really sweet.


Make a Wish brought Emma a gift this week. It's this really cool bean bag chair that has a big speaker in the back of it. It connects to the stereo and the music plays through the bean bag speakers and is supposed to calm the person who sits in it through the vibration and sound of the music. She was very calm for quite a while when we sat her in it today. She even laid her head back and relaxed for a bit which we hardly ever see her do. We are truly thankful for the gift.


Thankful for the disease which brought Make a Wish to our home, not so much! I wish I could just donate to the organzation and not have a child who is a recipient. I wish our wish could be for them to cure our baby girl and find a way for her to lead a normal life... a life free from seizures, and drool, and baby food and diapers, and constant tummy aches, and mushy muscles and a disease that has taken away all mobility and smiles and laughs and sight. I wish we would never have heard the words Batten Disease and Emma in the same sentence.

Monday, June 15, 2009

Not Me! Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.


Sit back, relax, and get ready to laugh. It's Not Me! Monday time again...

Oh. My. Gosh! Do I have a story for you this week!

(A little background before I begin)
This afternoon Kelvin told Luke to clean his room. While Kelvin was in the study, studying (what else?) I went upstairs to ask him a question. Luke's door was cracked, and I thought I would look in on him. I was taken a little bit by surprise when I saw a little rear end in my face. He was totally naked playing in his room. So, I tiptoed to the study at the other end of the hall and whispered to Kelvin to come take a look...

Okay, so my son is not totally naked, not one stitch of clothing on playing in his room today. I did not sneak to the end of the hallway to get my husband in on the spying action. When peeking through the door of Luke's room we did not watch in utter shock and disbelief when our son (umm, Kelvin's son) playing happily along, picks up a toy and pees in it! My mouth did not fall to the floor in complete and utter horror, and Kelvin and I were not biting our cheeks so we wouldn't laugh. Luke did not gingerly set the container (Carleigh's doll house couch turned upside down, now pee container) on his play workbench, and Kelvin did not peek his head in the door of Luke's room and tell him to very carefully pick up the said couch/pee container and dump it carefully into the toilet, at which point Luke's eyes were not as big as saucers! Kelvin did not ask Luke why he peed in the couch toy, and Luke did not respond with, "I had to go!" (I cannot make this up people! This is one of those stories that makes me wonder about so many things...does Luke relieve himself in toys frequently? What does he do with the container afterward? Hmm, I am troubled.)

We did not buy crawfish and boil it up and eat it on our back porch while sitting on our new patio furniture (anniversary gift to ourselves ;) ) and enjoy every bite! Our oldest daughter did not learn to peel her own crawfish and almost out eat me!

I did not get a really great pedicure and sit by one of my very best friends in the whole world! Nah, not me!

I did not have the sweetest girl helping me organize the kids play room and actually finish the project in one day!! (Hallelujah!)

I did not get up well before the crack of dawn the other day to attend "bring a friend day" at the boot camp for women with my friend and just about die trying to walk the next day! Not me! I am totally in shape after having had my fourth child!

I am not still surprised every time I tell someone I have four children. What's the big deal?!

I was not totally proud of myself for being able to nurse Cora in church this morning undetected! (or so I think)

Well, it is waaaay past my bedtime, so this is all the Not Me! we're going to explore today. Have a good one!

Sunday, June 14, 2009

These are a few of my favorite things...

We played the game recently to name three of your favorite things. I have so many more than three. Here are some of my favs...

...sitting on the back porch, talking, watching the kids play and having a cold drink

(Luke & Emma had so much fun they concked out on the love seat!)

...eating crawfish
...eating shrimp stuffed jalapenos
...seeing Cora smile and hearing her "talk"
...catching a glimpse of a smile from little m
...Aunt Sharon's salsa
...a cool breeze on a hot day
...reading Bible stories to the kids
...listening to the kids tell jokes
...roasting marshmallows
...singing praise songs
...listening to good live music
...hanging out with friends
...sleeping in Daddy's t-shirt (Luke, not me)
...swimming all day and lying around in pjs all night
...telling stories of days gone by

Daddy with his babies


Emma at about 6 months old watching the hot air balloons.




Emma getting ready to head to the beach


How about you? What are some of your favorite things? Leave a comment and let us know.

Friday, June 12, 2009

It's the weekend! Flashback Friday

Tonight we're having crawfish! Whoo Hoo! Yum-O! I love me some crawfish!! I got up with the chickens this morning to go to Adventure Boot Camp...a work-out exclusively for women. It kicked my bootie! Fun though. I think a few crawfish will be the remedy my soar muscles are looking for.

Just got back from swimming lessons with the big kids. I made a deal, or so I thought, with Luke on the way to lessons that if he would put his head completely under water and do exactly what the teacher asked of him I would help him buy the toy he has been saving his money for. You should have seen how he was getting his whole head wet without going under the water. It was so funny! He is such the negotiator. Carleigh is learning to dive now! She's doing such a good job.

I remember so well being on the side of the pool at the YMCA learning how to dive. I was so excited when I finally did it. I wish my little "m" could take swimming lessons with them this year. I wish she could learn how to dive too. I can just imagine one day in a place where there are no more tears and no more pain, where everyone's body works perfectly and there are no issues with enzymes or lipopigments or any disease or sickness, Emma and all the other little children in this world who struggle will splish and splash and do huge swan dives. They will run and jump and catch butterflies. Emma will laugh and play again and talk and tell jokes. She will play hand clapping games and jump rope. My little "m" will dance like a ballerina and sing like a bird. I wish that day would come on this side of Heaven...





Thursday, June 11, 2009

Summer Time and the Livin is Crazy Easy

So, the day Carleigh's school lets out early for the last day of school, she's telling me that very afternoon she is bored! Oh. My. Gosh! The child better figure out how to entertain herself, or she's going to have a frightful summer! I do not want to hear the word BORED ever again!! (SCREAM)The older two are already at each other's throats. One minute they are best friends, and the next minute they are bitter enemies. Calgon, take me away! I'm so glad we have many fun activites planned to occupy their time this summer.

They are taking swimming lessons this week and next. Carleigh is learning how to do the freestyle and doing quite well with it too. Luke is learning how to kick like a motor boat. I'm so proud of them! My next door neighbor told Carleigh a few weeks back as he was cleaning his built in pool and talking to Carleigh over the fence that she could have the pool. I know it's impossible to transfer the pool to our yard, which would be totally awesome, but I think I might ask him is it would be okay if we came over like every single day to swim! It really wears out the kids and makes them ready for bed without much complaint. It's already a million degrees outside in our neck of the woods, and just plain miserable if you're not in the water or the shade with a very strong breeze blowing.

Emma finally found relief last night from her stopped up tummy. Funny how our conversation changes after we have kids, isn't it? I'm getting totally amused as I type about my daughter's dirty diaper for the whole world to read. I'm just thankful she's feeling better.

Cora is growing so fast. She was adorable this afternoon lying on one of those playmats with the toys hanging down in her face hitting them and smiling one of those big, wide toothless grins. I wish I could've caught it on camera, but I got caught up in the moment and was moving way too slowly to make that happen before she decided it wasn't fun anymore.

Well, tomorrow is FRIDAY! Hope you get a great start to your weekend.

Tuesday, June 9, 2009

What is Okay Anyway?

Check out this hairdo!


So, what do you tell someone who asks about your daughter who is not doing all that great, and whose health continues to decline, but who is "hanging in there" nonetheless? I don't know what the answer is, so I just say "she's doing 'okay.'" She's not moving much, so a lot of the time her stomach hurts from constipation. She cried out more last night and today than I've seen her do in a long time because of what I'm assuming is stomach pain. Usually I can get her somewhat regulated with meds, but I guess I haven't done a very good job lately. I hope to get her back on track within the next day or two. Everything I feed her is pureed, and I'm having to make sure the spoon stays in her mouth long enough for her to get the food off without it coming right back out. I realize that proabably doesn't make much sense, but I don't know how else to describe her eating. She looks very thin. There's no toddler fat on her...no chubby cheeks or pudgy bellies. Her muscles are mushy and she has no strength to hold herself upright unassisted for more than a couple of seconds. Of course, she is blind, so she doesn't see the beautiful faces, the bright sunshine of summer, the pretty flowers in bloom, and when she looks in my eyes, she doesn't see how much I love her. I only hope she feels it. I didn't realize how down I get when I explain Emma's condition to whomever it is that asks. I guess when I speak aloud what she is and isn't doing I get a clearer picture of how she really is...she's not improving...she is getting worse day by day, and when we're with her day in and day out, we lose sight of her decline, I guess. This thing called Batten Disease is ugly. I could ask "why," but I know I will not receive an answer this side of Heaven. I have learned many lessons though. I wish I could have learned them differently, and not at Emma's expense. I'm learning not to judge. I didn't realize how quick I was to judge people until recently. You can't know what a person is going through or why he is acting the way he is if you haven't been in his shoes. I have learned there are a lot of people in this world who are hurting, and they need the promise of prayer, just as we have been given. I have learned life is short, enjoy the time you have now, and quit putting things off until tomorrow. I have learned I'm not a very patient person. I would like to say I don't get angry or frustrated with my other children, but that would be a big fat lie. I'm learning how to better communicate with them so I don't have to constantly hear bickering back and forth. Maybe I'll get that lesson down before summmer's end. I wish there could be no more pain in this world, at least for babies and children. It's so devestating to watch a child suffer, whether it be from a terminal illness, or hunger, so I'm learning to pray more and do what I can to help. I've learned to smile at people more, and look people in the face, especially those who are ill or a caregiver of someone who is ill. Everyone wants to feel...something. I wish so very deeply that I could have learned all of these things without my baby girl getting sick, but I don't know if I would have. God promises that nothing we go through in this life will be wasted. He will use everything for His good.

I don't want to sound like I don't want people to ask how Emma is, because I do. I want people to talk about her and mention her name. I want people to remember how cute she was and still is. I want people to share memories of her with us. If you have one, feel free to leave it in a comment. I need all the memories, because I'm forgetting more and more each day. I hate that. I wish I had a better memory.

Thanks for hanging in there with us...

Saturday, June 6, 2009

Batten Disease Awareness Day





Yesterday, today and tomorrow are Batten Disease Awareness Days. We would appreciate your help in getting the word out. Post on your blogs and tell your friends on Facebook.

Batten Disease is the culprit behind what has stripped Emma of everything she has ever enjoyed. It is a neurodegenerative disorder that leads to physical and mental impairment, blindness, and currently has no cure. Children afflicted with the infantile form of the disease, which Emma has, usually don't live much past kindergarten. They are missing an important enzyme, one that cleans out the waste in the brain naturally created by cells.


There are a couple of other ways you can help bring awareness about Batten Disease:


1. Tell someone about Emma or her friend Celia , and visit the BDSRA website to learn more and find ideas.


2. Use Goodsearch instead of Google for your search engine and choose BDSRA as your charity.


Thank you all the love and support you have shown our family since Emma's diagnosis almost a year ago. As rough as the year has been, it would have been a lot worse without you. We appreciate you more than you'll ever know.

Friday, June 5, 2009

Happy 7th Birthday




Happy Birthday to You,
Happy Birthday to You,
Happy Birthday Dear Carleigh,
Happy Birthday to You!!



Today is the day seven years ago that I gave birth to a beautiful baby girl. How in the world she is already 7, I cannot understand. She came into the world almost 3 weeks early at 7 pounds! Glad she didn't go full term, I woulda had a whopper! Carleigh is a delightful child. I pray God continues to bless her sweet life.





Thursday, June 4, 2009

Birthday Room and Deer Lease Pictures

**Updated** June 12, 2009 for Kelly's Korner Show Your House party
We moved into this house three years ago, and life has been pretty crazy ever since. Bathroom remodeling hasn't made it to the top of the priority list, so I thought I would show you the pictures of Carleigh's redecorated room if you missed them last time since I posted so late. It's so cute! I loooove it! Thanks for visiting!

Carleigh got a room makeover for her birthday. Here is before...




Here is the big reveal...







CUTE, huh?

And here are the pictures from our fun weekend...











Hope you enjoyed the picture post! Have a great day!
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