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!