I started this blog back in December of last year. I looked back at my FIRST POST, and noted all the misinformed facts I relayed: I said Epilepsy was a disease, I said that an MEG was scary, I said we weren't sure we could do this.
Now I am sitting here in a not-AT-ALL-private "room" on the regular floor , desperately missing our PICU family (I'm refusing to complain about being moved out of the PICU, however... it means my kiddo is well!), looking at my son who is sporting this giant battle scar. This surgery was exactly eleven months to the date from when we learned this it was even a possibility. I'm shaking my head at all the things that have happened: all the tears that have been shed, arguments started, arguments ended, family lost (both literally and due to stubbornness), victories made, friendships blossomed, and lessons learned. And you know what? We're finally ready for the life that is ahead of us.
I watched people as they looked at my son. There was fear. There was pity. And I realized that soon, we would be out in the world... the real world. Not in some hospital where for the most part, people are used to seeing major injuries. I felt like I was falling backwards... in slow motion. And yet, here was Renn, blissfully unaware. I know I need to take that approach. But I'd be lying if I said that was going to be simple.
Just before our dinner arrived, Renn spaced out. I didn't recognize this face. He was stone still. He wasn't blinking, or talking. He was seizing.
I asked him what his favorite movie was. "I don't remember." Crap.
I asked him what school he went to. "I don't know."
Eventually, he was answering questions correctly. But he kept saying, "Mom, I'm fine, I'm fine! I was just cold, Mommy. I promise."
After a long talk, he broke down. He was embarrassed and ashamed... He actually recognized that he had had a seizure. I told him how it wasn't his fault, that we were to expect these little guys for a couple days or even a couple weeks post-op. BUT that they WOULD go away! He kept saying how sorry he was... No, son. I'M sorry.
I can say one thing... We're 99.99999% sure we will be heading home tomorrow. Starting then, we will know how life will resume.
Based upon how unsure I was about facing the year ahead, one year ago, and seeing God completely take over and bring us here? I have a great feeling about what's to come. We are blessed. We have two, incredible, strong, BRAVE children who can handle each curve ball thrown at them. They will be men who can provide for their families and think under pressure. We went through this year for a reason... I can see some of those reasons slowly unfolding already, but the rest is unseen. And that is where faith comes in. And faith is the number one lesson we've made a commitment to learn.
Thank you ALL, for reading, and praying, and sharing, and calling, and texting, and mailing letters, and going to the extra mile to make our son smile. Our faith in God's plan and your love is what got us through. We are ever so grateful!
Sometime next week I will be posting two VERY important posts about two GIANT pieces of our weeks here at UCSF. Number one: Eli Nathanael... The brother that stood by Renn each day, who held his own and rarely complained, who acted like a ten year-old at the age of four- all because he could read the tension. HE deserves so much... And I'm going to tell you why!
Number two: The wonderful, incredible staff in 6 PICU South. I will be sharing stories in more detail, and will give you insight as to why a great medical staff makes all the difference in the world.
Once again, thank you for taking this journey with us. We are a long way off from being in the clear, but now a new understanding begins.
From us, and our sweet Jedi,
God bless you all...
Then they cried to the LORD in their trouble, And He brought them out of their distresses. He caused the storm to be still, So that the waves of the sea were hushed.
Psalm 107: 28 & 29