Prayers and TSC Awareness Day

So as most of you tomorrow is tuberous sclerosis awareness day. We are so excited to see everyone in their blue! Last year it was so touching to see everyone support our daughter and the others who fight TSC daily. Make sure to get your blue on tomorrow and tell someone you know about TSC. If you have any questions about the disease, please feel free to ask me.

So tomorrow it seems fitting that we would be doing TSC related appointments. We have done the MRI, so now it's time for the EEG. We will head to her neuro and have a 20 minute EEG done and then discuss how we are going to wean her from her Sabril. This is something that weighs heavy on my heart and mind. On one hand I am very excited to hopefully have her off all seizures meds! That would be an answered prayer! But on the other hand I'm scared that she may start to have seizures again. I'm also scared of how she is going to react coming off of a medicine she has been on for over a year. I know she needs to come off of it because she doesn't have the hyps. pattern anymore and she has been seizure free for over a year! PRAISE GOD! I just can't bare the thought of seeing her seize again.

We do know that due to her having TSC and the tumors on her brain, that she is high risk for seizures. Sometimes thinking of the stats of TSC just make me angry. I hate waiting around to see what part of the statists she will fall into. It can become maddening to think of the odds. I know that the statists are very real. But I also know that our God can overcome all things. I am constantly praying for healing, protection over her precious organs, and of course praying that God would completely remove the tumors. I do know there is mighty power in prayer. I have seen Him work miracles in Maddie's life.

Our preacher recently asked us a question that I don't think I have ever asked myself. He asked us, what we expect when we pray. I know several times I have prayed for something, but didn't have any expectations. Not that I didn't expect anything from God, but I didn't place any action on what God could do with that prayer. It completely opened my eyes to the limits I have put on Him. His miracles are limitless! And oh how thankful I am for that!

Let's pray with such conviction that we KNOW and EXPECT God to hear us, and to answer our prayers, even if it's not the answer we want.

Tomorrow, will you please pray that God will show us his presence throughout our day. Will you specifically pray for her EEG to be completely normal and that there will be no spikes. Will you also pray for wisdom for us and her neuro. And last but not least, will you please pray for peace. I don't want to be scared tomorrow. I don't want to be anxious. I want to feel peace with this new step. I will certainly being praying for all of these things. But how nice it would be to have you all do this for us as well. I have no doubt that our prayers will be heard.

I am so thankful I can come to you all with our prayer requests. And what a relief to know that you all will be praying for us tomorrow.

We love you all and are so thankful that God has placed you in our lives.

Love always,
Heather

Psalms 4:1

Answer me when I call to you, O my righteous God. Give me relief from my distress; be merciful to me and hear my prayer.