Several folks have mentioned that I havent posted much lately. They were concerned that I was still having a terrible time since the HUGE let down regarding Daltons inability to get Eteplirsen.... The life saving drug. Just wanted to let everyone know we are all doing great. I had my few days of excruciating sadness and uncontrollable anger....... All the while discussing with God, What in the world are you doing here? How can any of this be good? He never answered me audibly but I woke up one day totally at peace. The peace only HE can give.... The same peace I have been blessed with through the majority of our DMD journey. As I have mentioned countless times, I always try to look for the silver lining I KNOW is in every situation we could possibly find ourselves in! This time was no different. Within a couple hours of getting the email from hell..... David insisted on getting me out of the house to run a few errands with him. I had swollen eyes from crying so hard! Sure I looked like a hot mess!! As we passed TOPS Barbecue, the fat girl that now stress eats decided she wanted a JUMBO sandwich .... So David stopped! As we were sitting at a booth he asked me what I was thinking about. Tears were slowly rolling down my face and I told him I was soooooo ANGRY! Angry at God. How in the world could HE let me get a random message on one day stating things look fairly certain that Dalton would get in the Eteplirsen study and that travel was NOT going to be an issue. Then just about TEN days later it is ripped out from underneath me! I truly believed in my realistic heart that it was going to happen and Dalton would be healed!! It was the cruelest joke anyone could ever play and guess what ..... It felt like GOD was playing it!!! How could He?!? So back to the JUMBO BBQ sandwich.... I then began to speak of the many things He might want from this. Maybe the initial reaction of David.... Which was far from positive... Was actually God speaking through him. Maybe the complete and total healing without medication is exactly what HE has planned. Then people.... Doubters.... Will not be able to explain it away and all those watching our journey will KNOW that HE is the God of miracles!!! HE is alive! HE is the ONE TRUE GOD! And HE alone can heal my baby!! No matter what..... I know for certain that regardless of the What if?s and the Maybe...s and the Why?s..... That I will continue to glorify God with all that I have! Many things in this life are not meant for me to understand...... Many of them are to, simply, bring me closer to HIM. Without suffering.... Without pain.... Without trials.... The human in each of us would feel we have it all figured out. We truly seek HIM in the toughest of times. And for THAT.... I am so thankful for every single trial HE has allowed me!!! And this one, the most horrific one most could ever imagine, is far from over. I am in the early stages. It will very likely get far worse than I would like to believe..but HE will be with me.... US... Every single step of the way. We pray for a cure every minute of the day. We pray for a miraculous healing! We pray for a drug to paralyze the disease! We pray for anything that can stop this disease from eating our son alive. We pray it is on this side of heaven and HE gives us that HOPE....that PEACE.... That TRUST....that JOY....that FAITH that it can be!!! We will love Him, honor Him and praise Him no matter the outcome!! A friend sent me some information last week about a 38 year old man with Duchenne that has a ministry. She hoped it would encourage me. This courageous man is married, went to college, helped run his family trucking business, and now has a ministry. He is incredible and it is amazing! I have to be completely honest here.....as inspiring as it is, his wife writes of how tough life is for him. How much suffering he endures daily.....hourly. It takes her and several aides three hours to get him ready every single day. He cant breathe on his own. He cant move at all. He cant feed himself. He even has difficulty speaking. That is hard for me to read. To wrap my head around. As a mother, I can not imagine that type of life for my baby boy. I DONT want that type of life for my son!!!! I understand that it isnt my choice.... But I pray for quality of life rather than quantity of years. I pray that I continue to feel that way if/when the time comes. I pray that if healing him in heaven is what God has in store...that HE will give me the strength to let him go. Writing those words brought tears to my eyes. I just cant even imagine. I dont want to imagine. I just wish it could be me....not my baby boy!! This 38 year old man has an incredible perspective on suffering. You can visit his website at justbecausehelives.org So....in summary.... We are good!! God is great! BLESSED! LIVE ON PURPOSE!!!
Posted on: Tue, 09 Dec 2014 01:05:12 +0000