I know I've been quiet.

I haven't written...because I don't really know what to write. Or where to start. Several things have happened lately that have made me realize that when I hurt, when things get tough, I get quiet. Me- the one that is rarely at a loss for words...quiet? Sure I still talk, I can spew facts at you, or tell you all about what we have learned about tsc...but when it comes to my heart and where it is, need time to sort it out. I need quiet.The last week has been extremely hard. And while it has had its blessings and positive moments a lot of the moments have been scary as hell and I have felt broken and helpless in a way that I have never experienced.Emmaus started having seizures last Wednesday. When I saw the first one I knew. Something in my gutt told me it was a seizure. And honestly my thought then (and several times since then) was "wow, we are really going to do this TSC thing".When we found out about the rhabdomyomas we prayed that it wouldn't be TSC. When she was born and we saw the skin marking on her arm we still prayed it wouldn't be TSC. When the hypo-pigmentation spots on her legs showed up I prayed it wouldn't be TSC. We knew it was, but we also know that our God is bigger than our daughters genetic code. We have prayed over her every day of her life. My prayer has always included. "Protect her brain, make her mind sharp". I knew that her having brain tubers was likely, but I was hoping that her case would be mild and that seizures wouldn't be a part of her case. And Wednesday I realized that "we are doing this thing", we are "walking down this road".The first day of her seizing and our trip to CMH that followed wasn't all that bad. Yes watching your kid have a seizure is about the most helpless feeling you can have, but we handled it. Thursday she was knocked out and man did I miss her! She seriously was asleep for 24 hours. And when she finally opened her eyes and started to wake up I was so thankful to see her little eyeballs. I missed my smiling, cooing, crying, baby.
We got to come home Thursday night with a seizure med for her to take and an emergency med incase of prolonged seizure activity.
No seizures Thursday.
No seizures Friday.Saturday they started again. She had about 15 Saturday and every single one was awful. All I could do was sit there. Stroke her little head, tell her "it will be okay" pray for her mind to be protected, pray for them to stop & tell her I love her.
Sunday there were less, but still some. Then sunday night our church community gathered together to pray for her. It was really encouraging. This child is very loved. These people pleaded with the father. Prayed in faith for healing, and strength. They prayed that this little girl grow up to run and jump to laugh and play, and above all to know the God who created her. This little girl is very loved. We have felt that love. We have felt the prayers. We have felt an overwhelming sense of calm and peace in this journey so far.
After our time praying for her she didn't have another seizure for 18hours. It was a wonderful time of rest for us all. And 18 hours is a victory that we are thankful for!
Monday night was rough. She had several seizures in the evening and then multiple episodes overnight. She would often wake up seizing. It made for a very sad and restless night. I was thankful to see dawn come.This morning (Tuesday) I finally lost it. My heart is breaking for my sweet baby girl. I don't feel that it is fair she have such a huge battle to fight at such a young age. This morning she had several longer seizures and even though they were only minutes long-they felt like forever. I cried buckets this morning. The exhaustion of being up all night definitely played into my sadness and emotional instability. Thankfully we both (baby girl and myself) got rest today.
Our small group night was tonight. I almost canceled it. It felt so overwhelming to think about being with people, to try to pull myself together enough to just be with people seemed like a huge task today. I am so glad we didn't we had a great time with our friends. And then we got a chance to pray for her as a group again. It is just really encouraging for us to hear the words people are feeling & praying. It is encouraging to know we are not alone in this and people are walking with us on this road.Tomorrow we have her EEG. Which measures brain activity and will tell us specifically where in the brain the seizures are coming from.

I am thankful for our community that has surrounded us in this time.
I am thankful that God (and those in our community) has/have provided for us financially. We have been so blessed by peoples generosity.
I am thankful that this baby girl is in our lives. She is growing peoples faith. (another blog post soon on my thoughts about this)
I am thankful for my husband. He is a constant support. He loves me well. He is encouraging. He is kind and he is a great father. I wouldn't want to be on this road with anyone else.
And last but not least we are thankful for the prayers that have been pouring in on our behalf. Like I said earlier we have felt them. We have felt covered by the spirit. I have had mulitiple facebook messages from people telling me our daughter is on their church's prayer chain, that "they don't know us, but they are praying for our baby." It has been cool to see God's kingdom band together and pray for this sweet baby.

I think that is enough rambling for now.

Love,
La