Tuesday, August 27, 2013

Burr Hole Galaxy: Day 1

 Hi friends...

Yesterday was a difficult day. And I apologize for having to sum up everything into one post. I am sitting, typing, and fighting the inevitable sandman who is so frantically knocking at my eyelids. However, I know that I would sit and stoop (instead of truly sleep) about all the things I wanted to say in this post. It's the curse of a writer, I'm afraid, so here I am.

We arrived at UCSF right when we were supposed to, at 8am. Surgery was scheduled for 9am, but we quickly learned that it had been pushed back to 10am. And then, of course, we didn't get called back until 11:15am. But you know what was fascinating about him, yesterday?

His sense of calm. In this picture here to the right, he was walking down the hall to Admitting. He was looking at strangers, smiling, waving, saying hello, all while humming the Star Wars theme song. I walked behind him in awe. My husband was at a loss for words.Where did this precious boy come from??

We waited for what felt like 2.6 centuries, doing all we could to distract our brave Jedi Warrior (knowing all the while that we were trying to distract ourselves). Obi Wan Puppy was given a hospital bracelet because he was going to be by Renn's side for the whole stay. Our Jedi played games on the Wii system Child Life brought out for him and never once asked when it was our turn to go.
But when we finally went back, I saw fear in Renn's eyes for the very first time. It was ever so slight, ever so brief, but I still saw it... and it broke me. I honestly only knew to lie and tell my son that it was going to be okay... I knew it was a lie, because my own fear was getting in the way of being able to believe that statement myself. I could not guarantee, without a doubt, that everything was going to be "alright", why was I trying to convince him?

I prayed that the nerves would calm down in all three of us. I looked at my sweet husband, read his face, and knew he was praying for peace as well.

We got to the room where we were to have all the final discussions with all the people we were literally putting our son's life into the hands of. They gave Renn some "happy juice" and boy oh boy... Those were moments that I will never forget. It's not every day that you see your six year old act like a drunk, frat boy, but let me tell you- it was the laughter we needed to pass the time. He kept saying he felt like he was flying an airplane. And the smiles were contagious.

Then, it got hard. It became real. And this "little procedure" didn't feel so little. They were taking our first born son, putting him to sleep, and drilling four holes into his skull. They were going to put something foreign into these holes and lay it across and possibly INTO his brain. What, God, were we thinking?

It was time to let him go... It was time to trust him in the hands of people we'd only just met... It was time for this final four-part phase to get started. There was so much confusion, emotionally speaking; so much hope, fear, anger, resentment, love, and not to mention every memory of our little boy from birth till that moment came flooding in. But, we knew one thing... God, our true and most perfect Father, was taking care of him.
The hubs and I waited. And waited. And waited. And waited. We carried around Obi Wan Puppy and Renn's precious Blankie as though they were our infants. We met an incredible family, with a life changing story of their own. We all talked together for hours... 5 1/2, to be exact. It was bittersweet, and the last two hours felt like pure torture.

Finally, Dr. Incredi-Surgeon called... Renn was done. He came and found us quickly, and let us know all the details about the surgery. No hiccups, no roadblocks, nothing. But then, there was some seriously good news... The kind of good news that we've been praying to hear... Dr. Incredi-Surgeon let us know that the last MRI we had, they actually found something that they had never seen before. Something lit up bright as day, in an area of the brain that is most commonly an "issue area" when dealing with Epilepsy patients. Which means Renn truly has a shot of beating this thing.
Unnerved, relieved, and desperate to see our son, we paced the floor for thirty-five grueling minutes. And when we got to his door, an almost angelic-like halo covered him. Sure, it could have been the tears in my eyes, but there he was: Our baby boy who was born four weeks too early, so tiny, so frail... Who is now this brave boy, constantly blowing us away with his strength, generosity, kindness, and laughter. Our Jedi.

It took him some time to wake up. But when he did, in the groggiest, 80-year-old-chain-smoking-man voice, he said, "Where's Daddy? Can I play Angry Birds Star Wars?" He was safe. He was still him.

Last night proved to be stressful. A lot of frustration, pain, fear -on his part and mine-, swelling, blood pressure issues, heart rate scares, and nurses. (Holy on-the-hour-pestering, Batman!) But, we endured. He persevered.
In the next post, I will combine what went on all day today with whatever comes up during the day tomorrow. If you made it this far, thank you for loving us that much to read my obvious form of therapy. Thank you for praying for Renn. For spreading his story around, for loving him, for taking him in your hearts.
More tomorrow.
(photo: Tracey M. Cox- a sweet friend, a sister in Christ, author, and Renn supporter)
2 Corinthians 4:18
... as we look not to the things that are seen, but to the things unseen. For the things that are seen are transient, but the things that are unseen are eternal.


  1. Thank you, Bethany, for sharing with us this amazing little Jedi Renn and the journey you've all been taken on. You are all truly amazing!!!

    You are all in our thoughts that stream with continual light, love, and hugs ;)

  2. Wow, thanks for sharing all of that, Bethany. Strength and peace to you today!

  3. Now you have me in tears.
    Love to you all!

  4. Now you have me in tears.
    Love to you all!

  5. Now you have me in tears.
    Love to you all!

  6. Sending prayers for all of you and especially for Jedi Renn.

  7. Thanks for the update. There can be nothing but good news for that magical little boy. Hang in there. xo

  8. YAY (I think)! ANOTHER miracle! May He still look over you in days to come!