The start of a new day can be one that brings so much sadness and despair, it can bring hoplessness because of the circumstances and pain felt. Today though, isn’t a day like that. I woke up very early, and my whole body just hurt so bad, I felt so beyond tired. And thought, “great, here goes another day like this!”. But as I was sitting on our little couch and the clouds began to fade away and the sun began to shine, I got a restored hope for a good day. It’s good to have a day filled with hope. Today I’m hopeful for a day with energy and joy, a day that i’m able to get stuff done and actually do something with my life. Yay for happy days!
We got home from Arizona on the 28th, which just so happened to be my 25th birthday. It’s so nice to be home and just able to rest, think about everything that happened, talk about the plans for the future and just pray for peace. My birthdays are normally pretty hard for me emotionally, I wish my mind didn’t think this, but it does. Another year of sickness. 13 years..really? 13? Well, this year I will continue praying and believing in healing of my whole body. Brain, blood, and heart.
The trip to Arizona was surprisingly really good. Ok, maybe I shouldn’t say really good. But I was filled with a joy as I was literally locked to the hospital bed. The Drs. all saw it in me and I got to tell them about my hope and faith. I can’t believe how amazing those Drs. were. I saw 5 different doctors and each time they left the room I would cry, not because of sadness, but because of how grateful I am for the true genuine care and concern they had for me. Just the most loving people. I also got to bond with two different nurses. Gosh, they really just know how to make things better. I’m so beyond thankful for good nurses, if you’re a good nurse and you’re reading this, I LOVE YOU!
They were monitoring my brain 24/7 and luckily (?) they sure found what they were looking for. Almost constant activity in my left temporal lobe, which is where my seizures come from. When they took me off my medication, there was constantly abnormal stuff going on there. Even when I wasn’t having one of my seizures things looked wrong in there, which scared them. They all truly believe that removing it is just going to help my seizures so much. 70% chance that they’ll be gone forever! Ugh I can’t even imagine what that’ll be like. I have around 10 seizures every day. If not gone forever maybe 1 a week. Hey that sounds amazing!
Brain surgery for anyone is dangerous, but brain surgery for a girl with no platelets is extra. But they thankfully say it can be done. I will be closely monitored and given my treatment constantly to insure there’s no bleeding. One of the Drs. stayed in our room for about 45 minutes explaining how everything will work. Most of the time I had tears just streaming down my face. I’m so hopeful. But i’m so scared. I’m so scared of the pain i’ll feel, and the complications that could happen. I know, I know, I shouldn’t worry, and don’t one of you tell me that unless you’ve had this done! Thankfully my trust is not in man, but is in God.
We did get to meet the surgeon and of course he was super sweet! He seemed pretty confident in his ability, just a little concerned about the bleeding. He made it sound like a piece of cake to put the laser in there and zap a section of my brain out. Am I concerned i’ll wake up and not know who Rousseaux is? Yes I am. Am I imagining they’ll touch something in my brain that will make me sing like Beyonce? Yes, yes I am. So very many weird and random thoughts happening. I try to just imagine feeling good though.
They called yesterday and said they could schedule it for February 17th, that immediately made me start crying. So soon? I just got home. She understood and said 1st week of March is when it will happen. I’ll be seeing 3 drs before and getting a PET scan done. And then boom i’ll be under for surgery baby!
If I’m up for it I might try and go to Disneyland before, maybe fly up to Seattle to see my Uncle, maybe get a tattoo! I mean I need to do something before I do something this big that’ll put me down for awhile right?! If you have suggestions let me know!
We have absolutely felt so much love and support, and I’m truly just so thankful! The cards, the plants, the food, the clean house (thank you Jenna!). People are always asking what they can do to help and I can never think of anything, but now I have. Things that really help when I’m just unable to do anything are those things. Kind little cards, cute little houseplants,gluten free dinner for Rous and I (trader joes frozen meals are kinda making me sick), and helping with the house! So if you ever want to help when i’m going through a bad phase those are it! Love to you all♥
Oh! One more thing can I just say how amazing it is how many shares and views my Ellen video got? Honestly it’s been keeping me happy thinking that i’ll get to meet her someday. If you want keep sharing my video or even write to her, now that would be just amazing! I wonder if i’ll even know who she is after surgery..a joke! Calm down, my memory will still be there…I hope!
PLEASE SHARE THE VIDEO! 🙂
Wow I’m really craving a donut now, why are there not amazing gluten free donuts?!