Guilt Stricken......Not Anymore!!

Jace had 4 episodes today - that we "saw" ( that will be explained below). He woke up in such a great mood - was ALL smiles and so much fun. The neurologist didn't come around after the EEG but will be seeing us tomorrow morning bright and EARLY! I am curious to see what it is that they suggest from here.

It has been another rough day with emotions....I am holding together pretty well though. I almost lost it when Jace was getting his EEG done. I was REALLY expecting good results since he woke up with nothing but smiles this morning. The EEG tech was asking me when he was hooked up what he was doing (she was sitting at the computer for the EEG) and I said he was not doing anything because he wasn't - just lying there. She said he was showing a lot of seizure activity. It break my heart to know that our sweet baby boy is sitting there seizing at times and we don't even know at all!! I wonder what he thinks about it - does he have any feeling about it and the fact that we can't fix it? Its stuff like this that crosses my mind and I can't help but break down. I pray he is not wondering "why isn't mommy or daddy making me feel better?" 

I am so guilt stricken.....I try not to be but it is so hard to know that I am the one that carried this gene on to Jace. It is all my fault that he is struggling with this. It wasn't some random mutation and we hit the bad side of the reproduction lottery. No this was a 50/50 chance of him getting it. I didn't know it was THAT prominent when we planned for a family. I also didn't know how terrible TSC could be. The only thing I knew of the disorder what what we had in my family and that it was a rare disorder. Why I never thought to do medical research on it before starting a family....I don't know?

In my faith I know I should not feel guilty, anxious or depressed about any of this. However, I am only human so it is to be expected. I just need to keep trying to cling to God. I honestly have really been struggling with this lately. I don't know why, now, when our son is being affected by something terrible  that I can't seem to cling to the only TRUE GOOD in life? I know God is here just waiting for me to finally quit flailing around trying not to drown. I know there is purpose behind this but I don't know what and that is where I get in trouble. Is it really normal to feel this way in times like this? Shouldn't I be like the other faithful Christians and KNOW God has a purpose and a hand in all of this? Shouldn't my faith be getting stronger with each passing day of bad news and continued seizures?

I apologize, I am taking this moment to vent out my current and pretty personal feelings. I almost feel silly exposing all these feelings out there but to be honest I have always been one to keep my feelings to myself - it feels good to let them out for the whole world to read if they wanted. It make my feelings feel real.....and well I feel less alone with my feelings.

Scratch all that - I left what I wrote above only because I wanted to prove that God IS in all of this. I was feeling all the guilt stricken shame and was getting VERY down about it when I received a call from JB's Aunt Pam in the middle of typing this post! Her call was not from her at all - it was all God's work there! She called to pray for Jace and to pray for JB and me. Most of all it was a reminder from God that He is here and of how evil satan can be. It is satan causing all my guilt and all my grief. It is satan's evil work that is no longer allowed here! From this point forward I have to constantly claim that God is healing Jace and has healed me. I have failed witnessing my miracle that I know God will do a miracle with Jace in order to have all the glory for His kingdom!

I am in awe! God knew I needed to here what He had to say through Pam.

Pam - thank you so much for calling and giving my faith a swift kick in the rear. We love you!

I am no longer going to try to be strong for everyone - I need to realize that I am allowed to feel through this too. So, I end with saying that I am clinging to God through this. He will hold me when I cry, He will be there healing Jace and He will be glorified all through this journey. This is a lifelong journey and God is the only one invited!

I am headed to bed - I have an early morning tomorrow to talk with the neurologist.

Good night and God Bless!