just what I needed

I got up this morning and was really feeling "down". Things just were getting to me this morning and then... a friend Inboxed me on facebook with this...

The Silver Smith

A Group of women were studying the book of Malachi. As they were studying chapter three, they came across verse three, which says: "He will sit as a refiner and purifier of silver." This verse puzzled the women and they wondered what this statement meant about the character and nature of God. One of the women offered to find out about the process of refining silver and get back to the group at their next Bible study.

That week the woman called up a silver smith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest in silver beyond her curiosity about the process of refining silver. As she watched the silver smith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.

The woman thought about God holding us in such a hot spot - then she thought again about the verse, that he sits as a refiner and purifier of silver. She asked the silver smith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver were left even a moment too long in the flames, it would be destroyed.

The woman was silent for a moment. Then she asked the silver smith, "How do you know when the silver is fully refined?" He smiled at her and answered, "Oh, that's easy - when I see my image in it."



After reading the last sentence "Oh, that's easy - when I see my image in it" the thought really sunk in and hit me! The reality is, in hard times, God never leaves. He is our papa! He has a perfect plan and that perfect plan is SEEING HIMSELF IN US! He's making us like him every day and no matter how hot the fire feels... He is right there feeling the heat with us, holding us and never taking his eyes off excitedly waiting for the perfect refinement when He sees His very image in us! Thanks papa for loving me enough to love me and never look away!

oh the fun!

Last night, I went to my Sister-N-Laws house for a pampered chef party. I used to be a consultant for pampered chef and for some reason, when I get an invitation to a party, I get a momentary lapse of "Oh, I miss doing pampered chef." However, each time I go... that moment becomes more and more fleeting!

It was a lot of fun to get out last night and be with some other adults even if it was just for a couple of hours. However, I think my "fever" for pampered chef has ended. I didn't feel the need to buy the whole catalog. As a matter a fact, I was very well behaved!

It's funny what fazes, even as adults, we go through in life. Things you think you just can't live with out one day get put in perspective and you just realize that they are not as significant as you once thought.

I have to say, I'll probably hold a party again... they are fun and it is a great chance to get together with friends... but I think my "faithfulness" to the product has bid me farewell! :) Shhh!!! It's our secret! :)

~mindy~

Preparations

We have started getting every thing ready for little Jeremiah! Today, I pulled clothes out of the dryer and was taken back by the size difference in outfits. Even just Joey's clothes laying next to the clothes I washed that belong to Jeremiah. I couldn't help but take a moment and pray that God keeps him right where he needs to be until he's ready. Some times, I get overwhelmed at the thought of how tiny he could be if he comes as early as they are thinking. Regardless, we press on and we are doing every thing we can to have home ready so that when God chooses for him to arrive, it's all here and ready for him! I must say, I am excited to be going through his little piles of clothes and working towards setting things up for him. Baby's are just so exciting! :)

~Mindy~

Taking it all in...

Friday, we got some really hard news about my body. Mr. Jeremiah is doing well! He was active as can be and heart rate and growth just perfect on the ultrasound, however, my news was not so good on behalf of Jeremiah! If you haven't heard whats going on, you can read the story at our family Caringbridge site.

It's been very hard on me this weekend to process all that the doctor is thinking will likely happen. Jeremiah will likely have to be born very early and I have been a basket case thinking about how tiny and frail he will be. But in my heart, I know there is hope. I was talking to my mom with many tears just saying I was scared but I am holding onto the promises that God has given us and just recently gave us with the scripture of Jeremiah 29:11. So, that set my mom's mind to working! She got an email from a friend with a brazillion saying that says "It's enough to trust" and then with hearing what I had to say about the scripture of Jeremiah 29:11 (written at the top of my blog), she created this....

This is a little purple heart that has the scripture on it on a little safety pin. She made these for us to wear to remember that God has tiny little Jeremiah and his mommy safe in his hand! God is faithful and no matter what comes with all of this, his hand is on our lives and like mom's friend said... It is enough to trust!

I love grilling!!!

Jeff went and got propaine for the grill today!!! I'm so excited! We are having sliced taters & onions on the grill with chicken! Yay! I have to say, my favorite time of the year is pulling the grill out! Nothing tastes better than GRILLED food! :)

Ok... that's all I had to say! Ha!

~Mindy~

Please join me...

Please join me in praying for the Agnew family today. Their sweet Maggie lost her fight last night at 8:40 to mitochondrial disease. My heart aches for them as I can only imagine what they are feeling...


Many do not understand why we are doing this walk in April or this benefit dinner in March. Sadly, many dont even understand what mitochondrial disease is. So many kiddos look so good but deep inside this "Invisible" disease is robbing them of their life... so, THIS is why. It isn't just about us or raising money for something WE are passionate about... it's about fighting a disease that takes away too many lives to early! I want to do something. I want to stand in the gap and fight with and FOR these families who have already lost some one they love so dearly! Then, I want to fight for something to stop it... something to find a way to save some lives and stop this awful disease.


I know God has ultimate purpose and all of our days are numbered! I know that in my heart. But I also know that he has given us the ability to do things as well. To pray, to help, to support, to love these families. It isn't about what we can do on our own strength, it's about learning, understanding and standing together to work towards finding answers! So, join me, if you would! Walk with us April 30th and donate to help raise money for research! Or join our dinner on March 19th and donate there.not a dime of this is going to us... every single penny is going to research. We aren't even taking money out to cover our expensese... So, you can come and know that every penny is for the cause! We are going to talk about what mito really is and we are going to share our story. So today, for sweet Maggie, I wanna fight!


Jesus, hold this sweet baby girl close! Love on her and hold her family so close right now! May they feel your comfort and your peace! Amen!

memory lane..

Today, I have been spending a lot of time looking through old pictures, old caring bridge posts and it has brought many emotions... tears... joys... questions... hurt... good memories.. hard memories... One thing it has reminded me of are the people who have stuck by us. Some times, the road of life feels too much... then there is that one person who gives you a hug and suddenly you have strength for a few more days. Or there is that one email that says "Hey, praying for you today." and makes you realize you aren't alone. The one text asking "How can I help" and you realize there are people there ready to catch ya when you just can't put the next foot forward.

The road of life isn't always easy... but the memories we hold... the smiles our kids bring... the laughter we have with family... the moments that we have gotten to minister to people together... the times we have seen lives changed because of the place God had us that day... makes every memory worth it... every day we live worth it... every moment me walk with God... PRECIOUS! One thing unfailing in every thing I looked at today... God's hand was and is there always and forever! Thanks Papa! You are the amazing strength in our life!

Benefit dinner...

I am so excited to say that on March 19th, we are having a benefit dinner not for our family or to personally help us in anyway, but to raise money for a great cause! The reason we are doing this is to raise money for the "Energy for Life Walkathon" that we are doing in support of mitochondrial disease research! During this dinner, we'll share about the walk, but also, we are going to share about what mitochondrial disease is and how it affects are kids and so many others. I'm very excited about the opportunity to have friends come together in support of raising awareness and funds towards research. We have grieved with too many families for the loss of their little ones and even today, we are praying hard that God would make away for some who are fighting the end of their journey with mito. We know so many who are affected, adults and children as well! So, please join us! We are using our church as a facility to make this dinner happen, however, it's being done and provided by our family and donations of some friends and those in our community! At this point, we have already had Ham, Green beans and desserts donated! If you are interested in helping, please let me know! mommypfohl@gmail.com The dinner is Saturday March 19th at 6:o0 p.m. Please RSVP if you attending! It will be a great evening of fellowship and supporting a great cause to help make a difference in the lives of so many!!

A time for every thing....

In Ecclesiastes 3 it says "There is a time for every thing, and a season for every activity under heaven: (vs 4) A time to weep, and a time to laugh, a time to mourn and a time to dance,"

The last six months have brought on so much for us that this particular scripture has never been so real. When Abby fell sick in October and her little body couldn't fight, we were mourning... We knew the devastation this could bring yet we had hope for what God could do. It hurt to watch her go through this. Abby has always been healthier, stronger, and bounces back quicker... but this time she didn't. She was weaker, sicker and fighting harder than we have ever watched her fight.

She bounced back slowly but still isn't herself 100%. They began treating her for mitochondrial disease adding in the supplements that would help her fight at a cellular level... it's working. We rejoice that it's working but our hearts were crushed at the same time! Why mito and why our babies?

Joey has had issues off and on over the last six months... the treatment for mito is helping. This week, the bomb drops. Joey had a seizure followed by an EEG that told us he was truly a mess. Ever heard the saying "The straw that broke the camels back?"

Yep. That was us this week. I have been overwhelmed by the dark reality of what our kids face. Looking into mito again and realizing, there is no cure that takes it away, nothing that ever truly stops it and here we are... facing a disease that only ends in taking your life....

I let this take me by force this week. I've been scared, angry, depressed, hurting, fearful... this morning, I was awake AGAIN with all these things running through my mind. The thought of "What will I do when I lose one of them" running through my mind. I was watching videos on YouTube hoping to find some solace of comfort and hoping to find something that I could use in our benefit dinner that would help people understand this invisible disease... and one video began with "My son has mito, mito doesn't have him".

I sat there with it paused looking at that phrase... and then I remembered there are seasons... there are times for every thing. This week was my season to mourn, my season to weep because it hurts. But when that season stays... whatever we are facing has a choke hold on our lives! My babies may never ever face losing their life from this disease... it could be a car accident, it could be a natural disaster... it could be anything! They could live to be 100 because that's what God decided for them... The reality is... God knows our days... He knows what our lives were intended for and we can not let the things that hurt us control us. We have to live and live for him. So, I dried my eyes this morning and I have hope in knowing, our family has mito but mito doesn't have us and we will live for HIS glory and we will laugh and dance knowing that every thing we are and every thing we do are for Him and Him alone!

With this in mind... we are also wanting to do all we can to help and to fight. We will be walking in the "Energy for Life" walkathon April 30th to raise awareness of mito and to raise funds for research of how to slow and even stop this ugly disease! We would like you on our team! please go to www.energyforlifewalk.org/indiana and donate to or join team Pfohl of Hope. Also, March 19Th, we are having a benefit dinner at Farmland Friends Church to raise money to support our team, Pfohl of Hope. All proceeds from this dinner will go towards that walk as research money. If you are interested in coming or you are interested in helping in some way with this dinner, please email me mommypfohl@gmail.com God is our hope, yesterday, today and FOREVER!

~Mindy~

Coconuts!!!

OK... blogger wont let me move these pictures around... so you will be enjoying them in random order... ha!

The kids have been curious about coconuts ever since daddy went to Jamaica. We were at Meijers yesterday and found some in the fresh produce, so we picked one up to bring home for the kids to taste and explore. Joey wanted to use Jeff's big Machete he got in Jamaica to open the coconuts but daddy opted for a hammer! :)

Joey touching the coconut
Sis was absolutely fascinated by the inside!

We are in!!! (not with out challenge!)

Tapping for the milk....

Both kids had a look of "Seriously??" as daddy emptied to coconut! Maybe one day, we can all go to Jamaica as a family and watch the pro's do it! :)

Some get away time...

We had to be in Indy so early on Friday, that we stayed at the Marten house by St. V. They have patient rates so help with folks out of town. So, we decided to stay and enjoy some family time and SLEEP so we didn't have to get up at 4 a.m. to be there!

The kids were ecstatic! they have a pool at the marten house so, they are suited up and ready! :)
Little stinkers sharing a bed. totally cracked me up. Joey was constantly touching his sister his his sleep. At one point, he got so close to her that she literally climbed over him to take his side of the bed. She was so irritated with him!

Even thought it was brief, it sure felt nice to have some fun at the close of this week together! We enjoyed our evening. :)

~Mindy~

Farewell week!

I'm So so very thrilled to say goodbye to this week! Wow! It's just been so long! It's amazing to me how you can fit so many things in one week that are so happy and yet so sad! But, we sure did it this week! I will hang onto the happy and give God the sad! That's for sure!!!

The kids had appointments today to meet their GI doctor. She is just a fabulous lady and got us on a good game plan for the kiddos! She is going to do a scope on Joey in March because on exam and looking at his health history, she just wants to check into things. So, other than that, today went off wth out too big of a change in plans!

This weekend, we plan to relax and enjoy some family time! Thank you God for that! :) Hope every one has a great weekend with their families!

~Mindy~

Hard times...

Joey's EEG

Ready for sleepies....
All hooked up! He said "Hey, I'm plugged into a remote!" cracked himself up!

I tell you, this week has been so hard on us emotionally. The kids have had a lot of medical set backs this winter with all the flu and viral infections. Looking at them, they do look great, but things in their bodies have not been holding up so well.

Monday, we saw one of our doctors and coming home, Joey fell asleep. As he was waking from his nap, he stiffened and was shaking. I stood there trying to call his name and wanting him to answer. My heart sank as I realized that he was having a seizure. It's been 2 years since we have seen a true seizure in him and I felt my heart shatter within me. I thought these were gone and I stood here looking at the reality in front of me and I wanted more than anything to rewind time and have a delete button moment for that 60 seconds that I watched my baby suffer...

I called Neurology and they got us in on an immediate opening to do an EEG. Joey has had normal EEG's in the past. This time, the tech left the room and returned with our neurologist. She asked to speak alone with me. Joey's EEG was a mess. He was having spikes over and over and clearly showing seizure activity. She confirmed that Joey is having 3 forms of seizures. The stiffening (Which is what we saw Monday) Micholonic seizures which is where you jerk (Very short seizures) and absence seizures (This is where you zone out for 20 or 30 seconds and then go right back to what you are doing).

Joey has been weaker lately, more tired and his behaviors have been VERY hard to control. She said that this is ALL being caused by these seizures. So, we are starting the process of putting him on the seizure medications.

I am so grateful for the reminder of Jeremiah 29:11 "For I know the plans I have for you, Plans to prosper you and not to harm you, plans to give you a hope and a future!" Thank you God for these promises! Thank you for faithfulness and thank you that you are here in the midst of scary moments and hard news!

We have hope...

Some times, I look at life around me. The bad things in life seem over whelming some times; health issues, issues we face in our lives where we might live or work, the things you see on the news, the list could go on of "negative" or things that even feel destructive... right now, I have been sitting here pleading with God for hope... some thing to make me realize that life isn't all hard knocks and there is purpose for our struggles...

I was reading in Jeremiah, oddly, this is one of my favorite books in the Bible. I love Jeremiah's story and how he was used by God to speak. The promise God gave him in the beginning of how He knew his life before he began... We often quote Jeremiah 29:11 "For I know the plans I have for you, Declares the Lord, Plans to prosper you and not to harm you, plans to give you a hope and a future."

As I read this, I said in my heart "Lord, I know this... I have read this verse... held onto it. Why this morning? Why do I see this? Read this? It isn't new to me..." He asked me to back up and read again... so I did....

Vs. 10 Says "this is what the Lord says: When seventy years are completed for Babylon, I will come to you and fulfill my gracious promise to bring you back to this place." then it says "For I know the plans I have for you, declares the Lord, Plans to prosper you and not to harm you, plans to give you hope and a future..."

It hit me this morning... God really did NEVER promise not to let us go through the hard times. He never promised us that we would not face hard times. He did promise us however a hope and a future. What is your Babylon? What is it you are in right now? Some times, our struggles are short, but sometimes, like Babylon, they feel like they are a life time (70 years) and we wrestle. Is our response right? Do we get angry? Do we fight and wrestle and try to thwart what is going on around us?

What should our response be? We should trust, we should know that God's plans for us are set in His hand and in the end, when it is all said and done... we will have a hope and a future. he will prosper us and he didn't set this here to harm us...

whether it be sickness, financial hardships, break ups and challenges in life... God didn't intend it to harm you but to prosper you and to give you a hope and a future... it really is about our response in this that we find that to come to truth... trusting He has a plan and trusting that in the end... He IS there to take it and to carry you!

Longing....

I was looking through my pictures this morning, and I came across the pictures from my Nephew's birthday party... they made me LONG for summer! I miss warm days, hot sunshine, and playing in the water! So, I'm looking forward to bidding this winter good bye (For lots and lots of reasons!) and saying hello to the warmth and spring/summer fun! :)

I'm so very blessed!

I think my title of this says it all... I'm so very blessed! Thank you God for my kids!

Energy for life...

We are going to be walking as a family team in the energy for life walkathon. This walk is to help raise funds for research and support of families affected by Mitochondrial disease. Both of our children are affected. We would like you to join us! You can give donations to the link below, you can walk with us that day or you can simply commit to pray. Please take time to check this out and pray about it! We would love to have you join us in some form or another!

The "Pfohl of Hope" team has been established. Here is what you do!

go to www.energyforlifewalk.org/indiana

Scroll down and you will see a box that says "Find a team" you can click on "Pfohl of hope" and you may then go there to register to walk with us or donate to the team.

If you would like to JUST make a donation. Go to the box that says "Find a walker" Jeffrey Pfohl is the team captain. you may click on his name and make a financial donation there!

The walk is April 30th. Walkers begin registration at 10 a.m. and the walk starts at noon. There is a picnic afterwards to hang out together if you desire to stay!

The place:

Outside IUPUI Taylor Hall Lawn

815 W. Michigan St.
Indianapolis, IN 46202

Thanks for standing or walking :) with our family!

~mindy

Sunday morning sing

Singing proud in church! (joey was really REALLY shouting out his song! ha ha!)

Getting ready!
Lining up in the hallway. All were getting anxious!

Waiting on service to be ready for them to enter...

All dressed up... hair done... ready for church!!!

My pictures loaded backwards and the blog editing wasn't cooperating with me rearranging them... so, hope you enjoyed the reverse show. Ha! :)

The ice is coming! The ice is coming!!!

Tonight, I told the kids they could put their boots on and step outside the back door to feel the sleet coming down. They were curious what it felt like.

When I told Joey to get ready, he dug out his boots and his spider man umbrella!
Sis had to help him open the umbrella! He just couldn't figure it out!

This is ALL sleet covering the sand box. Isn't that crazy? You can see the sleet in the picture still coming down.

Buddy isn't a big fan of the sleet! He wanted back in and back in NOW!! Poor guy. He just would rather NOT go potty right now.

It's Insane listening to the wind blow. You can feel the wind through our front door. Jeff had to go out to take down the wind chime. It was crashing against the front window. Man, I sure will be glad when this winter has come to an end and spring is here!

~mindy~

Just too cute!

Tonight, we were doing our bedtime devotions with the kids. We started over in our children's through the Bible book. So, we were in Genesis talking about the first 6 days of creation. As we talked, sister kept noticing in the pictures that Adam and Eve were WITH the animals. Jeff explained to her before the "fall" of man, the world was perfect. It wasn't until after Eve took the first bite and Adam did as well that the imperfections, the sin and the bad things came into the world.

So, Joey is processing this and they are talking about how when we are in Heaven, things will be perfect again. Suddenly, Joey bursts out in laughter. In the midst of his giggling he enlightens us on his humorous thoughts!

He says "well, when I get to heaven, Bubble gum is going to be nice to me!" And again... bursts into laughter almost to where he couldn't breathe from being so cracked up! We all sat laughing more at his own reaction to his joke than we were laughing at his actual thought. He is so silly!


Now we all ponder and wonder... what has bubble gum ever done to Joey?

I love mornings!

Mornings are my favorite time! Not because I LIKE waking up early but because my kids are ALWAYS the most snugly! I love sitting and holding them and the hugs and kisses I get! :) Those moments make me so happy!

I then stop and think about Papa (God). As our papa, how much does he desire for us to curl up on his lap? So, take some time today and love and snuggle your papa before you start your morning! I bet it will change your day!!!

Getting so big!

Well, we are happy to say, sister is an official reader! She has been reading some here and there but the last two days, she has really been busting out those words and trying hard! I'm so proud! I have to say, it's bitter sweet! I don't want them to ever grow up but watching mile stones hit are amazingly proud mommy moments!

Healthy zone!

I have been really talking to the kids about nutrition, the important things to eat, not over indulging in junk food and I was so cracked up tonight!

We went to Wal-Mart for groceries. I told them they could each pick a snack. So, Abby picks her favorite of the Cheddar & sour cream Pringles. Joey picks the yellow chips (lays, original).

So, they both want their snack in the van. As I am opening them, I realize I don't have snack bowls. So, I remind them that eating things within reason isn't always bad. So, they can have the package but need to NOT sit there and eat the whole bag/can on the way home.

So, as Jeff is putting the rest of the groceries in the back of the van, I hear both kids counting. Abby counts to JUST two and says "That's all I am eating mommy!" Joey doesn't stop till four and says "Mommy, is four Helpy (healthy) food?" I chuckle to myself thinking "Well haven't we developed some extremists" However, I smiled and said "That is a good amount but I don't think a few more for either of you would hurt too much!"

Cracks me up when kids "Get it!" but take it to the extreme! I have to say, they sure make me smile!

God amazes me...

Some times, I just sit in awe of who God is... I have been really struggling in the last 24 hours. God knows my heart, He knows my struggles and HE knows my needs. Some times, in the midst of a struggle, I want to withdrawal from every thing and every one and just be alone. I even catch myself doing that to God some times, but He reminds me, I can do NOTHING in my own strength. I came to tears today reading Psalm 142. The WHOLE thing is wonderful, however for me today, there were pieces I wanted to share.

"When my spirit grows faint within me, it is you who know my way... I cry to you, o Lord; I say, you are my refuge, my portion in the land of the living... Then the righteous will gather about me because of your goodness to me."

These are, as I said pieces of this passage. This entire passage is about Crying out to God... in loneliness, brokenness, whatever it is, crying out to Him and being heard even WHEN NO ONE ELSE hears... He is our portion, He is all we need and in the end, those will gather around because of seeing God's goodness.

It's a reminder to me, that when living life, the most important thing is drawing near to God! When we draw near to Him, He draws near to us with great love and people are drawn to that love. It doesn't matter what we face, or what we battle with, God is ENOUGH! He is big enough. He is good enough. He is faithful enough. He is strong enough. and His love is MORE than enough!

Jeremiah...

I was reading the word this morning and found myself in Jeremiah. I was reading chapter 25 and had moments where I stopped to really think. These scriptures are talking about judgement and God forewarning the people to change, but in their hearts, they refused to listen. The scripture that sticks out in my mind says,

"Turn now every one from his evil way and from the evil of your deeds, and dwell in the land which the Lord has given to you and your forefathers forever and ever; and do not go after other gods to serve them and to worship them, and do not provoke me to anger with the work of your hands, and I will do you no harm."

The "I will do you no harm..." I think some times we as Christians become too passive. We forget how mighty the God we serve is and we think ONLY of his compassion and grace. One thing that has always kept me growing as a Christian is remembering that GOD means business. Yes, he is a God of grace, of love, of compassion, but He also can be turned toward anger. He asks us to change... do we? He asks us to lay down an addiction, or something we enjoy that we know is even maybe only a little wrong in our minds... do we?

It's an amazing realization when you stop and think about it... anything that God asks of you and you do not do... for whatever reason you may have for NOT doing it... you are putting that above God, therefore making and idol of it or worshipping it higher than your respect for God. I'm humbled at this thought as there are areas in my life I strive daily to lay down for Christ. We ALL have them because we are ALL human... but this morning... I sit quiet and I take note that God can be turned to anger at the work of my hands. Whether it be intentional or whether it be something I passively shrug off... God sees and God knows. The grace is there for me or for you to change... no matter how big or small the area is in life... God cares enough to help us change... What's he asking of you? Are you listening? Are you striving for Him? If not, today can begin that change...

Snow fun...

So excited to be outside!
Daddy made her a snow bed! Yep! She's barried!

Sis "helping" shovel the snow and Joey winging a big snow ball at her head! ha!

Again, "Helping". Her shovel would be full but she would either dump it back on the drive OR she would spill it all trying to teater the weight of the shovel. Cracked me up!

Laughter does us good!

After the last few days, we needed some good chuckles and we sure got them today. We took the kids out to play in the snow this afternoon. Abby made a path to the neighbors house by rolling! Ha! She's a stinker. Joey had fun just diving into snow drifts and laughing as hard as he could about it!

Jeff... well, he shoveled the drive, however I did notice that all the snow that ONCE WAS on his shovel usually ended up being flung at one of the kids! It was good to watch them play and laugh and have a good time! Those moments, I will Cherish forever and ALWAYS!!!

I'll post pictures soon! :)

Some days...

Some days are easier than others... but right now.... God is surrounding me and I have so much peace. we have so many things changing or in transition for us... my chain should be rattled! It's amazing to me how God directs your steps!

We have been in the midst of changing our care to closer to home for the kids. In changing, it comes that breath holding moment of wondering how its going to go, will we like the doctors, will they understand every thing... we sat with our family doctor awhile back and told him the writing on the walls with our wonderful medicaid was warning us this was coming. He gave us advice and well, we are walking it out now and finding wonderful blessings along the way!

The doctors that we are meeting are not only knowledgable but so great with our kids and our family as a whole! We are so thankful for the transition to be going so well.

In doing all this, they have given the kids the "clinical" diagnosis of mitochondrial disease. This is hard for us as parents to accept. But their concern is the drastic ups and downs that come in their health. some times, the changes are daily and some times the changes happen over periods of time. This is a diagnosis that as been on them, off them, on them... off them... But Cinci doctors were coming to the place of "Treating them as mito patients" because that is what they were typical of in their medical behavior. In talking with our nuerologist, she sat us down and we went over symptoms, treatments, reactions with a fine tooth comb. She explained mysteries to us... things we thought were just us being nervous were considered autonomic defficiencies. Things we thought were something were just things that "happen." It felt good to have some one take time and help us know what to worry about and what not to worry about!

She has stated that she is agressive in treating but that she's approachable. If something does NOT work, we trash it, if it works for one kid and not the other... we work with that. It's so GREAT they aren't putting the kids in these boxes and saying "Here's what you do" because our kids have simlarities in their symptoms but are also on total opposite ends of the spectrum in many ways. Which is another typical issue of mito.

So, this is the journey and where we are. we are putting ourselves out there and trusting God. If you are interested in understanding what the kids issues are, you can visit www.mitoaction.org this is a wonderful site to explain really what our kids go through. Some days are great, some not so great and some just in between!

Deeper thoughts...

Some times my thoughts get away from me and I feel like I am swimming in them. This morning has not been far from that. Questions of why are we where God has us? Why are my kids suffering with this muscle disease? Will it go away? Will they find a cure? Will God touch them? Why do they have to be so tired? What will be with this baby.... the thoughts just go on and on...

I struggle some days to remember the hope that Christ has promised us and I sink into the feeling of despair because I want to take this away from them. I want to understand our lives and the path we are on... but the reality is, it isn't for me to understand. It is for me to trust God and to know that He is able to care for us, able to carry us in the storms, able to teach us to smile on bad days... God is enough. I don't need answers because he is my answer.

This morning, I was reading my Bible and I came to Psalms 139. I stopped in a moment of reflection and aw. The first thing I read was this:

Psalms 139:4 "Even before there is a word on my tongue, Behold, O Lord, Thou dost know it all."

Every thought that enters my mind... He knows it before I speak it. All the hurts, the joys, the angers, the celebrations... they don't pass through with out His knowledge! He knows well and He knows them even just as a thought. I was humbled that my God would pay close enough attention to know them before they even form to a word in my mouth! then... I read:

Psalms 139:5 "Thou has enclosed me behind and before, And laid Thy hand upon me."

In these thoughts and moments I struggle... when I'm unable to say what's bothering me... GOD IS THERE and has SURROUNDED me with HIS VERY OWN hand upon me! I sat in tears as I took that in this morning! To think that in my lonely moments, God is really all around me. He knows every thought that passes through this frail mind and HE LOVES ME ENOUGH to be with me.

Papa, thanks for being the God you are. Full of mercy and tenderness! Full of compassion when life feels it is too much! Thanks for loving me enough to surround me and place your hand on me! With out you, I am nothing! With out you, I have nothing! You are my only hope and you hold yesterday, today and tomorrow in the same hand that is holding me! What a great big papa you are to guard me in and keep me as your own! I love you!

Love,
your little girl

Resolutions made for me....

Most make their new years resolutions themselves... Mine was made for me this year. While at the doctor yesterday, I found out I have diabetes and have to start checking my blood sugars and watching what I eat now. I go Wednesday for my diabetes education. So, I started my new years day measuring food and beginning to think about all the nutritional stuff that goes into this. Have to say... I'm a bit stressed! Whew!

I am thankful though that I have to do this for Baby... I struggle to do things for myself out of just trying to take time for every one else... but now I can focus on this and get it under my belt and hopefully, once baby is born, it will be 2nd nature and I can continue on it simply to improve my own health. So... One day at a time... here we go! Lord give me strength!