We found out that Chandlers spells were because of his Chiari. He had a decompression brain surgery in November of 2009. We will go back in November of this year to decide if he needs another surgery. We are awaiting a muscle biopsy along with other tests to decide if he has a mitohondrial disease. We went to Cincinnati in November of 09 and found out that Chandler has a bone marrow failure disease. Which one, we still do not know. We appreciate your prayers throughout this long and difficult proces. Please keep our little boy in your prayers.
Faith is powerful
Feb 28, 2014 11:08pmI'm laying here in bed after reading my nightly devotional and really started thinking about my journey with Christ. This is more about me than chandler, but I am hoping that maybe someone will keep from making the mistakes I did. I became a devoted Christian back in high school. I had my flaws, and many of them, but kept my faith pretty strong. I kept my faith going strong for a long while. Never doubting Gods word. But, when chandler got sick, I started doubting. I didn't understand why God would do that to such an amazing child and more so, who didn't deserve that. Even with doubting, my faith was still there. It needed a lot of work however. I started to pull closer to God a little and then we found out about Chandlers chiari and he had his brain surgery. I remember the exact moment I turned my back on God. I was laying in the bed next to chandler while he slept after his surgery. His dad was asleep on the couch in his room and I laid there staring at him watching his every breath terrified something would happen. I started to pray over him. I started to anyways. Then I got to questioning God why again. Then, it hit me like a ton of bricks. I remembering whispering "God you are not real are you? What others have said is true. Church is nothing but hypocrites and people just trying to one up the other." And I vowed right then that I wouldn't buy into it anymore. After that, I cried myself to sleep most nights. I pushed everyone close to me away. I did things I never would have thought of doing and hurting so many. I lost some of the best friends a person could ask for. I went through the most difficult times in my life. That lasted almost 2 years. I was lost. I didn't know which way to turn. And all those closest to me that were devoted Christians, id hurt. So I didn't stand a chance. I didn't have anyone to help bring me back to where I needed to be. For myself and my kids. So I sank deeper. Into a hole that I couldn't get myself out of. When I say I made mistakes, I mean mistakes. Things you can't undo. But I remember the day i was brought back to reality like yesterday also. It's been a hard hard couple years. I was done. I couldn't take it anymore. I was continuing to hurt anyone i got close to. Anyone who even started to get close to me, I'd sabotage. I went to lay down in bed that night. I got a message. Out of the blue from a person who I barely knew. Their child was being tested for SDS. They went on about how amazing of a mother they thought I was and how much I was a God send for directing them to our drs. I didn't do anything special, I shared chandlers story and told them the best SDS drs and emailed our dr in Cincinnati. They got in to see him and things were improving. But in that message, I read so much more. I saw the emotions. The fact that someone admired me for what id done for chandler. My questions were how, how can you admire this person who isn't worthy of anything. But they did. I chose to re download my devotional app and just read something, still skeptical. I opened it up and it was a devotion of how god loves you no matter what and he is with you even when you turn your back. I cried through the whole thing. And for the first time in a long time, I prayed. And I prayed for a very long time. I felt relief. And these days to follow, things seemed to get so much better. I was happy again, good things kept happening and things just got better. There were still days I had a hard time coping, but I had a way to get through it. I started rebuilding relationships. Some, unfortunately I could not repair no matter how much effort I put forth to fix it. When I went downhill, I was not at all a friend, so it was only my fault that that couldn't be repaired. I've grown stronger in my faith. It grows more and more daily. Yes, there are days that I still struggle. Especially when I look back to those horrible couple of years and miss the people i had. But I'm blessed with the people I was able to patch up with and the new friendships I have built. I'm very lucky. I have 3 beautiful children, an amazing husband who supported me through times I didn't deserve support, and an amazing family. I do have days where I feel like I should be the one sick, not chandler. He doesn't deserve it and i wonder if this is my punishment. I know that isn't true, but that struggle is real. And I think every parent with a chronically ill child feels that way. But, I get through those feelings because of my faith. And one thing I know, I will not turn my back on God again. It didn't help anything, just made it worse. I've learned to forgive myself so I can move forward and be the mom my kids deserve, wife my husband deserves, and friend my friends deserve. It was hard forgiving myself when I didn't deserve it esp knowing others couldn't. But I had to. My faith has been a long road with lots of curves, but I came around. I still have a ways to go. I think it will be a work in progress forever. But I'm willing to put the effort in everyday. Anger does powerful things. But it doesn't get you what you want. My anger didn't heal chandler, it only made things harder for him. So now, we stand strong in our faith. I know god is real. He is there through the hardest of times. And he will continue to be there through the best and worst of times. I am blessed. Truly blessed.
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