Frazzled and beginning to show it...

Do you ever have a day you feel frazzled? This week has brought me to that point. Just seems as though there is something going on in every area of life and on all sides of me! We have just gone non stop here this week. I will be glad for tomorrow to come. One last appointment and we are DONE!!!!!!!!!!!! Hope you all have a great Friday tomorrow! I know I'm going to enjoy it!

Lazy day...

Very exciting day!!!!!!!!! We took a snow day. Mommy is under the weather, Joey and Abby both seemed tired today which could mean one of two things, they are either just tired... or they are coming down with something themselves... I'm hoping for just tired! So, Miss Abby and I played candy land three times while bubby was sleeping... do you know... she beat me two out of three! Whooped by a three year old! Whatever will I do!?!!?!?

Fat doens't just fall off...

I mentioned in another post that I have been really being pulled by God to work on areas in my life. Our bodies have a lot to do with what we can do for God. If we make the poor choices to make ourselves sick... we can't serve God. I was reading my Bible tonight and a portion of a scripture absolutely slapped me... Romans 14:20a "Do not destroy the work of God for the sake of food..." This brought much conviction to me. Right now, I don't always feel like I'm doing the work of God. I often get bogged down with the medical side of life. My day starts with meds, then is filled with physical upkeep and doctoring and rehabing... and then ends with meds... I often forget that God is at work in me and through me even in my daily tasks because HE has given me these tasks. I am a stress eater. I found out today that dad was being admitted for sickness and congestive heart failure... where did I turn... hmm... salty potato chips. One, not only are my children watching and learning... I am the trainer of their mind set right now... but two, I'm destroying my body, a vessel that God is ever working through for the sake of an addiction and an apparent stress releaver. That so breaks God's heart! Every task set before you God calls you to do well. Your neighbors are watching, your friends, your family, your CHILDREN... every opportunity set before you is an opportunity to serve. I don't need a plane to take me clear across the seas to some far off land... I am called and SET APART right here... bought with a price and precious vessel for God's use RIGHT HERE IN MY HOME!!!!! So, I was convicted today. My choices do affect and can destroy the work of God. I read on tonight in 1 Corinthians 3:16, 17 to read "Don't you know that you yourselves are God's temple and that God's spirit lives in you? If any one destroys God's temple, God will destroy him; for God's temple is sacred, and you are that temple." WOW!!!!! Do I not destroy my body, God's temple with the choices of what goes through my mouth. and then again in 1 Cor. 6:19 "Do you not know that your body is a temple of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your body." So, if food can destroy the work of God (Now granted, if you read on in Romans, it is talking about different faiths and not allowing what you eat to cause some one to stumble, however, in the context I am referring it seems to also apply when you add it to these verses...) My body is something that needs to be healthy and kept for God's glory. If I am destroying it with food, I am also destroying the work of God by abruptly choosing to shorten my time (health break down) and then, I'm destroying God's temple! HIS dwelling place... God help me to make the choices I need to so that I can be a clean and pure temple for your glory! Set me apart and be with me to have the strength to say no to food and to flee to you so that your work may go forward! Amen!

WIPED OUT...........

this my friend is exactly how I feel WIPED COMPLTELY OUT!!!!!!!!!! I got home tonight and collapsed on the couch. Life has been FRANTICALLY busy. No kidding! I'm so tired I don't know which end is up. I would love for life to SLOWWWWWW down... It's been a good week, but my goodness... just a little busy. Thank you for praying for us. For life's happenings.. visit the kids caring bridges. The links are to the right. Under our journey of mito and under all my list of friends who blog. So, click their names and happy reading! Night all!

This ever crossed your mind???

Ok, I came across this picture on google images tonight... So, has this ever crossed your mind? I think it has mine this week! I'm so ready to down size clutter so that we don't have constant messes... I have all but thrown out the kitchen sink this week! =) I tell you, I think I'm most excited about moving because it will be a fresh start on "order". It is so hard to keep order when you have the schedule we do. Monday, two appointments at Riley... Tuesday, three rehabs... wednesday... rehab again... Thurs. two more appointments at riley... see where I'm headed??? I'm never home and if I am... I want to crash on the couch! Guess I better not throw that to the curb too! Whew... I'd be in SERIOUS trouble. Anyways, it is a good feeling of accomplishment to make the head way that I made today! Hope you all have a wonderful nights sleep! I know I will... my body hurts from all this cleaning! Can't help but sleep! Night!

Todays 2nd post...

Hey all! Just wanted to make you all aware that I have added a new link list. My friends who face mito. There are several names, but surprisingly, NONE that are local. These children are spread all over. So, please take time to peak at their pages and say hi as well. I am thankful for caring bridge as it builds a gap for us all to walk this together and support each other!

Words of praise...

I guess you could say that God is really doing a work in my heart right now. I have struggled for so long with truth. Struggled to let go, struggled to trust the GREAT hands of MY maker, struggled to rest peacefully knowing that HE holds the plan and only HE can change that, struggled to know that each day was made for a purpose... as you know, some times a work in your heart is painful. Some times there are raw spots, some times dry and calloused... well for me, God is working on the most painful area... my most raw spot... the spot that I hold my children most dearly. I clutch that spot tightly. yeah, I have to let go because ONLY GOD can be the one to bring them through this... only HIS healing is their hope... there is nothing else... So, me holding on does not bring them closer to that... I have been thinking a lot... the Scripture I read tonight came from Jeremiah 15:19... part of this really stood out "...if you utter worthy, not worthless, words, you will be my spokesmen..." Our words do have power. For God to say that we need to utter worthy not worthless words to be His spokesmen, that is pretty powerful. The same goes with our daily lives. Not just our spiritual walk. The words that come out of our mouth mean every thing. It may simply be they affect the moods of those around us or it may be it affects things within the heavenly realms. My goal this week is the words of my mouth and the thoughts in my heart. I don't know how much this affects my kids as far as healing, etc... but I do know one thing, it affects my attitude and my spiritual walk. So, here's to uttering words of worth... words that uplift, cheer and bring us closer to papa! God, thank you that you love me inspite of myself. Thank you that you are forgiving and thank you that your grace is sufficient for my every need!

The week comes to a close...

I tell you, this week certainly has not been the easiest I have ever faced. We didn't loose any one, no one got hurt... it isn't even just the fire. Daily comes the reminder my children aren't what every one else's are. I never would expect them to be, but some times I wrestle within myself as to how I should feel about life and about what has been delt us... then I realize just how big God's incredible love is. Tonight, I'm restless, as I often am. So, I am listening to my favorite song, "I will praise you in the storm" by Casting Crowns. The song starts

I was sure by now that you would have reached down and wiped our tears away

stepped in and saved the day, but once again, I say amen and it's still raining

but as the thunder rolls, I barely here you whisper through the rain, I am with you

as your mercy falls, I lift my hands and praise the God who gives and takes away.

I will praise you in this storm....

It's the end of the day... it's coming to a close... things remain the same. My children are still sick. Their lives rest only in the hands of God. Many don't realize the severity of the disease. They say my kids look good, but that is the blessing and the curse of mito. They look good, but that is what often gets the medical condition over looked by many. We try every day not to focus on the reality... the fact they say to make it to teen years is a blessing and to make it to 20 is an absolute miracle. That can destroy a mommy's mind. Every day, I look to God and I listen to that faint whisper that HE is here. There are days it is hard to hear that or even believe that, but I praise Him regardless in faith knowing He is there. Some days, my praise is faint. Tonight, I stand in awe of God. My children are sick with this awful disease, but they continue to beat the odds. Still they face much that is scary, but each time... they over come with a story that brings glory to God... A few short days ago, we shared that we need a one story home... in two months, we move in... The rain may be falling, but God is THERE. I pray for those who walk through trials, whether it be mito or any thing that you face as a trial in your own journey of life... I pray you can over come the bitterness and dis-trust that can come in those trials and you can find the one true loving Father who is waiting to hold you up. With out Him, I am nothing... with out His hand of strength, I can do nothing... a part from Him, life is meaningless! So, Father, tonight, I praise you in this storm and I thank you that each day is meant for you and alone for your glory!

My babies...

SPECIAL CHILD
You weren't like other children
And God was well aware
You'd need a caring family
With love enough to share
And so He sent you to us
And much to our surprise
You haven't been a challenge
But a blessing in disquise
Your winning smiles and laughter
The pleasures you impart
Far outweigh your special needs
And will melt the coldest heart
We're proud that we've been chosen
To help you learn and grow
The joy that you have brought us
Is more than you can know
A precious gift from Heaven
A treasure from above
A child whos taught us many things
But most of all "REAL LOVE"
-Sharon Harris-

Happy valentines day to my sweet babies! You guys light my world and for every thing we walk through, I'm so glad daddy and I are the ones that get to be with you if you have to face it! We love you both so very much!

Never Ending....

WEll, tonight was another scrubbing night. I scowered the kitchen floor and got all the caked on yuck off and finished up wiping and washing every thing else. I think the house is ALMOST normal! Yeah!!!! So, tonight, one of our friends from church... Jill... came over to help out. Jeff had meetings at the church, so it was kind of nice to have some one here tonight. Jill in the kids tackled the kids room, while I hit the kitchen/laundry. I was getting so cracked up listening to conversation. Let me tell ya! Abby told Jill that bubby came from Jesus. That was adorable! So, big thanks to Jill! Donna brought back all of our plates/dishes tonight. She had them washing them at her house. We are ever grateful! The ladies up at the church sent home a wonderful supper of meatloaf, mashed taters, and greeny beanies... MMM.... So, thank you to all of you who have thrown help out there! We are ever so grateful! Hope you all have a wonderful nights sleep and get great rest. Night!!!

To beat it all...

On top of no stove, we also had no water... our pipes froze because of the furnace getting shut off after the fire. We came home last night and made it through 24 hours. Finally, jeff and my brother were able to get it thawled out. You don't realize how much you need running water, especially hot running water until you don't have any. Thank God for water. Now we just need a stove. If you know of any one wanting to sell a stove, let us know.

The after math...

Well, reality has set in. Here is my sweet Abby displaying our fire after math. Aunt Christi and daddy came over today to scrub the kitchen down. Donna was gracious to take some dishes to her house and put them through the dish washer! And well, this is what is left. I wish I had gotten a picture before they cleaned, but I think I was a bit in shock last night. God really really looked out for us. THe cabinets have a few places that they are literally singed, but the wall and the ceiling are the only real damage to speak of. So, after lots of elbow grease and a tired family, we are all done. My emotions of it all finally hit when I walked into the kitchen. Seeing the stove gone and the burn marks from the flames, it set in that it had really happened. Oh well... tomorrow is another day! I just thank God me and my babies got out and we are all safe and no one had to go to the hospital. Still praying for continued protection on our health. Abby is snotty and sneezy tonight, but papaw and Aunt Christi were both under the weather.... so here is trusting God to make it all ok! Night all.

Nothing short of crazy...

Well, just when you think nothing else could possibly go wrong... IT DOES! Jeff took off tonight to Connersville to be with their growth group. I was home with the two kids. I put some potatoes on to boil and well, Abby had a dirty diaper. I run her in to change her only to hear the fire alarm going off. I look up and there is black smoke billowing out of my kitchen. I told the kids to stand by the door, mommy would be right there. I was intending to run and see if it was managble or not, but also grab emergency stock in meds. Well, it was too late... the smoke was too bad and there was no time but to get the kids out. So, I left it all, picked up the phone and called 911 while putting the kids emergency ponchos (Gift of Riley safety store for special needs kids... these are thick and warm for such an emergency) I tucked one under each arm pit. as I hung up from 911, I called my friend mandy to come help with the kids (Thinking if the neighbors weren't home, she'd be the next closest person to come get us). She seen the front door still standing open by this time the smoke billowing out the front door. Crazy girl went in! She thought we were still in there needing help getting out. She realized we were gone, however got nervous because she heard my voice. We have specialized fire alarms. Noise aggitates Joey, so Riley gave us fire alarms that have my voice recorded on them giving calm direction instead of the loud beeping. Ha! However, she gets a huge pat on the back because she got the fire out before the fire department arrived. So, there is a LOT of smoke damage and clean up, but the only actual loss was the fan/vent over the stove. The rest is easily fixed. So, God's hand was in it. After calming down and realizing what tonight could have been... the scripture about how we are refined by the fire came to my mind. I sit and wonder why, but God is only making us to purest that we can be. There is probably a crazy reason this is all happening. I can't just accept there is a black cloud that follows us... God is molding us and making us and if we hang on, we'll come out on the other side more beautiful than any thing we can imagine. So, as you go to bed tonight... please pray for us as we clean up. There was too much smoke damage, they said the kids would not be safe there tonight. So, we are staying at my parents house. Hopefully, Jeff and I can get it cleaned up tomorrow enough we can move back home tomorrow night. The kids health is fragile right now and stress intensifies that... so please pray. Joey was having major problems this a.m. that almost required a trip, but tonight was better. However, he is having his intestinal issues now... so that is always a quick admit. I'm very warn down and was running across the alley in bare feet and short sleeves, so pray I don't get sick either. Thanks so much. God is bigger than any crisis! Night all.

300th blog...

Well, I was at a loss what to blog about tonight... so I'll congrats myself on my 300th blog. This is it... you are reading it... I have officially blogged 300 times! Hope all of you have enjoyed my blogging. Now I'm going to sleep and might have a bit more of an exciting blog to share with you tomorrow. Night all!

I lift my eyes up...

There is a song that I used to play on the piano when I really felt down or just needed some much needed time in the presence of God. It's called "I lift my eyes up." Today, I have really learned some thing as I put this song into practice. Every day, as I walk out what "mito" means for our family and the fact that it is a terminal disease... we have to turn our eyes to heaven and trust that the very God who created the breath of life within our bodies is the God who sustains us. I walked into Riley today completely anxious and well... GOD SHOWED HIMSELF. My daughter is having symptoms of what they thought was problems in her heart... the last thing you want to hear with a mito patient. We went for the Echo and praise be to God, it returned normal! There was not a problem in the heart. We still are not sure where the symptoms are coming from, but we are thankful that God's hand was there and Abby's heart is whole! So, it is true, I lift my eys up to the heavens and where does my help come from! He is the keeper and sustainer and I walk in placing my trust in Him. Papa, thank you for loving me in the midst of nerves, in the midst of struggling to trust and thank you for holding my babies in the palm of your hand every single day!

shameful... or maybe just adorable...

Ok, I have a confession to make... I'VE BEEN GROUCHY TONIGHT!! I'm tired and at least a wee bit stressed out. Well, tonight, we were saying bed time prayers and abby says in her usual manner "Jesus alive" (This is how she starts every prayer... we aren't sure why, but we kind of like that she came up with it... so it's stuck!) So, she continues after some thought "Jesus, please help mommy to not be grouchy and to get some sleep so she can be better to go to the docker with us in the morning." She thinks a moment more and then prays again "Jesus alive, please help daddy so he can buy me more treats!" Ha!!!! So, I guess I was a bit convicted I may be a bit more grouchy than I thought since my three year old had to pray for me to not be so grouchy in the morning! She cracks me up. I tell you, she is a girl of true faith! Night all.

Do you ever have days you feel like you are hanging on by a thread? I'm so thankful that God is my strength and my refuge and that in my weakness HE is made strong. Today has been one of those days where I suddenly realize that I'm exhausted and some what burned out. I spent a lot of time today stopping to say "God I need your help." My fuse is short, my humanity is showing over my spirituality and I just needed some strength. Oddly though, it was the best day we've had in a long time too. I was able to spend some time talking to Abby about her behaviour. She's been really upset about all the medical stuff and every appointment is followed by tantrums or melt downs. so, we got to have good talks today because when mommy's tired... she feels about the same. It is so amazing to me what she comprehends and some times, when I really sit and listen to her... she teaches me. So, it is true that in our weakness God is made strong. I'd say he was very strong in our house today. Mr. Joey is having some asthma problems... so I have spent the day tending to him. He's starting a sterroid asap after seeing the ped today. Hoping this helps! We have yet another full week ahead of us. I pray all of you have a wonderful nights sleep and selfishly... I'M PRAYING I DO TOO!!!

Our Trip to Indy...

Big thanks to every one who helps with the Joseph Fund. Normally, we go to Riley and we have much cheeper, much less exciting lodging. But our sleep studies are twice a year (once for each kiddo) at clarian north and we get the exciting discount from the hospital to stay in a fancy room. Thank you for making this happen for our family. We would be unable to afford to stay when the kids are there for medical issues and the gas money would be too great to drive back and forth. Your gifts are amazing. Thank you also for every one who participated in the benefit at Arby's this last month! We are eternally grateful!

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Just feeling thankful...

As the day draws to an end... Joey and I find ourselves miserable! Stuffy and akey! I think we both caught a chill in the sleep lab last night. Not as warm as we are both accustomed to (any of you who have been in our house would understand!) Miss Abby is her usual happy and Jeff... Norm! =) I just find myself thankful tonight for the family God gave me. If I had to walk through this life with any other man, I couldn't think of any one I'd rather walk beside than my husband... my kids, I couldn't ask for sweeter... so full of love... I so much wish they could be healthier and not face what they do... but since they do have to face it... I'm so thankful they are mine. So... here's saying a great big I LOVE YOU to my little family! You're the best guys! (oh, and if you didn't notice... Abby was a little excited in this picture!)

Poor guy! This is the picture of Joey at his sleep study. This is from this morning after he had already woke up. He was very impatient! They had actually already taken off his arm splints he had to wear to keep him from touching the wires. It was very funny though. Once they took the head wrap off, he wripped off the O2 canula himself (didn't need it but they put it on just in case) and hten when they took the next layer off, he wripped off every wire from his head all in one shot! Oh it looked painful. Glue, tape and all... WRIPPPPPPP!!!!



So, this is Joey on the couch at the motel. He had been watching Jack's big music show and apparently, he decided he hadn't had enough sleep because he was zonked! Poor guy!

A little fun with a little medical!!!!!

Well, today we picked up Joeys SMO's... these are what he will wear inside his shoe in hopes to stop his falling. He isn't very thrilled. They have little dino's on them! Too cute!!! We had to be in Indy at 1 p.m. today to pick them up. We were very excited that the Orthotic place was just down the road from Clarian North where Joey has his sleep study tonight... so we get to also have a little fun!

The benefit and down side of having to go to clarian North is that the hotels that offer hospital discounts are on the more high end... when we stay at Riley, they barely give you a blanket and a bed.... the motels are NOT so great. We got to check in after picking up our SMO's and then take a little swim. Joey was VERY excited. Little does he know what he will face tonight!

Miss Abby was siked to Jump in the pool. She was so excited she was shreaking!!! She is a fish! She did well with the temperatures tonight as well! Yeah abby! She's usually purple after five minutes. We warmed up in the hot tub and she looked like a rosey apple! Ha! She was so hilarious!!

Then came drying off! Abby wanted to be just like mommy! Oh so much fun! We'll check in tomorrow and update after Joey's sleep test is over. We leave in about an hour and 15 minutes to check in by 8 p.m. BLAH!!! Hoping for a restful night and no screaming because we have stuff all over our head! Night all!