If you follow me on instagram, twitter or facebeook, then you know last night was a real doozy with Miss Courtney. There were several grand-mal seizures including two where she stopped breathing for 32 and 47 seconds perspectively.
They were hard to watch her go through. Watching her turn blue??? Really,really hard. The excitement lasted for three to four hours before her rescue meds kicked in and she stopped seizing and fell asleep. In the midst of it I reached out for prayer coverage on social media. As always you came to our rescue.
Jerry and I were able to remain fairly calm throughout and focused on making sure Miss Courtney's airway was clear and she was as comfortable as she could be. It's hard for me to pray in the midst of these seizures. I am so focused on Court's physical needs that the spiritual ones flee my mind which is why I always reach out for support.
Today has been pretty quiet. She was seizure free until around 6 p.m. this evening when she had a short but strong breakthrough. I suspect that there may be more activity tonight. The rescue meds are not as effective as they were four months ago. It's just so frustrating to know that we cannot ease her fear or pain. The more we medicated the worse it became so the Neuro team decided that it's best for her to ride the seizures out as best she can with the current med dosages.
There was a moment last night, when Miss Courtney was in the throws of her seizures, in my arms, her body arching and shaking, making choking noises, holding her breath and turning blue that I placed my hand on her chest and looked up at the Crucifix on the wall. In that moment, I just begged God to take her. No more seizures, no more fear, no more pain or discomfort for my Courtney. I begged Him to just let this all stop and to bring her straight to Him. Jerry was holding her hands so she wouldn't hit herself in the flailing and arching as she went through the seizure.
I looked at him and tears were slipping down his face. "It's not supposed to be this hard." He said quietly. In that moment, my heart broke for my sweet husband who can drive me batty with his glass half empty world view, but whose love for his little girl goes deep and is all encompassing.
No, it's not supposed to be this hard, but for whatever reason God is allowing this hard season for our family and we both have to constantly remind each other that there will be a day when God will call Courtney home and our arms will be empty. So we press on, begging and pleading for a different outcome then accepting and releasing our own plans into His hands. Not easy to do.
Not easy at all.
These last 36 hours have brought life in our home to a complete standstill. Tomorrow is St. Nicholas Day, a day I have celebrated my whole life and is an important Feast Day for our family. For the first time there will be no cookies baked and no chocolate coins or oranges in the shoes. I have not gotten any ornaments for the kids to represent their year to put in said shoes. In 26 years this will be a first. It makes me sad, very sad.
I know that in the end, it's not important in the big picture but it's just another sign that things around here will never be the same. Miss Courtney passed three months of the six months the Docs gave her this week. I don't know how much longer I can hold it all together watching and waiting for her time here to end, all while loving her as best as we can. I feel...I feel...oh who knows what the hell I feel these days.
I do know that God knows, and in the end, that's all that matters. Thank you for walking with us and lifting us up in prayer. Just, thank you so very much...
Labels: Courtney's World