Monday, January 7, 2013

Jedi Master Training Mission: Day 1

We have arrived at UCSF, and Renn is quickly winning over the staff on the ENTIRE 6-Long floor!

As soon as we got here, he surrounded himself with the oodles of Star Wars trinkets that loved ones have both bestowed on AND made for him, and he sat quite comfortably while he playing various games.

But eventually, the hard work had to begin...

He took to it like a true Jedi warrior, I tell ya. He breezed through getting the electrodes put onto his head, and knew the whole process by heart. He only got irritated when he had to close his eyes for part of it (probably because it meant he was going to "mess up" his game!).

After we signed our lives away and began to get comfortable, Renn had a seizure... Hallelujah!! It wasn't huge, but we caught it, baby! And I'm not going to lie... I did a happy dance.

Finally, it was time for Daddy and E to leave... That part wasn't fun.

After a while, we had sooooo many people come in and ask all the same questions (this is a research hospital, after all! I met quite a few medical students, residents, etc. I just pretended I was on an episode of Scrubs!), but when we finally saw Dr. Amazing, she informed me that she has no serious plans for Renn at the moment.

Wait, WHAT?

 I was kind of confused. But what she meant was that she really wanted to capture some serious seizure activity to base her opinions on, before deciding how long we'd stay. I got the feeling that we won't be here longer than a week (yaaay!!). And, while that's a great thing, I think that means that we won't be getting the one-stop-shop testing done as we'd hoped for. Living so far away, we'd prefer to get it all done at once.

Then, as we turned down the lights for bed...

 Renn. Broke. Down.

He began to beg, to plead, and to sob, "I just want these off my head! Why are you doing this to me?? Stop torturing me! I hate this, Mommy! I hate it, I hate it! I want to go home!!!"

Mommy wanted to grab him and run.

I know he's not angry at me, really. I know better than to take it personally. But, put yourself in my shoes, and tell me your heart doesn't ache.

I think I'm now okay with not having a one-stop-shop testing situation on our hands. I can't even hold him, as he lies in that hospital bed. That camera is just as fixated on him as I am, and as he sleeps peacefully, I am praying. Constantly praying. And I am forever grateful for the verse God gave me on Sunday...

"It is not for you to know times or seasons that the Father has fixed by His own authority..."
Acts 1:7
Day one of this mission is now behind us. May day two bring the biggest and best answers imaginable.
Sweet dreams, Jedi...


  1. Thinking of you two. You are not alone, sweet dreams.

  2. I'm wiping tears as I read the last part of this. I had a small taste of that feeling when Jessica, our oldest was about 4. She has scoliosis and had to wear a hard plastic brace. It was sort of like a shell that kept her spine as strait as possible. She hated it, it was uncomfortable, it was hard to move in, and you can't reason with one so little. I hated that thing, I hated having to put it on her, but mom's do what we have to. I pray God will be both your strength and your comfort. A verse that was and continues to be precious to me is Jeremiah 29:11 "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Love and prayers for you, your family and your little Jedi Master.

  3. Gosh Bethany, I'm crying as I read this! You and Renn are so brave. I've had smaller instances of this kind of feeling - what mother hasn't? - but I have been fortunate so far not to have to go through anything as intense as what you are going through. Nighttime is a tough time to maintain perspective. I'm sure your little guy will feel more cheerful in the morning in spite of everything. But I think you are right - it might be a blessing in disguise if you get to break up the hard stuff and go home for a bit before round 2. Thinking of you. Praying for you. Hoping things will be better tomorrow.

  4. One seizure down, one break down over with, one day finished. Thanks for the update. We're praying for you and Renn every day. Hang in there. One foot in front of the other. You're not alone.