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~
2 comments:
Mindy, I had no idea Joey had a seizure this week! Do they know what kind he had? Is this his first one? Hope your heart rate has settled after all that drama...thinking of you and praying...hugs!!!
Michelle
Michelle, he is having 3 kinds Abscence (we are actually seeing this frequently this week), miochlonic & then one that causes stiffening (What he had that lead us to really realizing he was having seizures). I can't remember the name of these.
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