Friday, August 30, 2013

Burr Hole Galaxy: Day 5

 We woke up in the wee hours of the morning only to discover that Renn's IV had fallen out once again. The poor Jedi... He'd had the hardest time falling asleep last night. I think the weight of yesterday was holding him down, and he was worried about things that he didn't even understand.

Around 11pm, I saw him staring at the wall. I asked if he was okay, and the look of grief took over his young face.

"I'm just... I'm just... I don't know, Mommy."

I held his hand and promised he could tell me anything. Then I asked him if he heard things today that might have upset him (which I was praying was not the case. I was not prepared to have this conversation, because I haven't even wrapped my own brain and emotions around it). Renn's eyes looked straight down. They were distant and full of fear.
"I'm sad, Mommy. I don't like to see you cry."
Lord, thank you for giving me a child with such a tender heart.
So, I cuddled with him. I laid in that stupid hospital bed, breaking all the PICU rules, and I held my wise Jedi. He shouldn't be concerned about ME. I assured him that I was crying because I love him more than anything. I was honest with how angry I am that this is happening to him. But we both agreed that God was running the show. And with that (and a couple sips of milk), he fell asleep.
Two hours later, we were faced with having to give him a new IV. Luckily, we had an incredible nurse who thought it best to let him sleep until he absolutely NEEDED his antibiotic. So, at 3:45am, we just made it happen. Not. Fun. It took only two tries this time, and he handled it with more grace than I wanted to.
At 7am, we were whisked off to pre-op, awaiting his 7:30am surgery to remove the electrode strips. Dr. Incredi-Genius greeted us with some lovely, hilarious jokes, and just like that I was walking him into the OR. I got to be with him when he fell asleep. I looked each one of the nurses and neuro assistants in the eyes, and knew God's angels were looking back at me.
Within a couple hours, Renn was back in his room in the PICU safe and sound. He woke pretty easily, and immediately wanted to take this picture for Daddy. He said, "I want Daddy to see that I'm okay and happy."
We played, we got excited about going home, and then Dr. Genius walked in and he and I discussed more and more about what's to come. And you know what I realized?

We asked for prayer about this whole surgery.

We asked that our family and friends pray that the discharges causing the seizures were coming from ONE side.
And you see, despite what is happening next, God answered that prayer.
Now we need to determine if the discharges are starting in the Frontal lobe or the Temporal lobe. We went over all the options. We discussed all the side effects, possibilities, pros, and cons. I can't say that I feel at total peace with this decision... yet. But, I can clearly see that God gave us what we asked for. So maybe, just maybe there's hope in this. Maybe we aren't making a bad choice. Maybe God is showing us that this was His plan. I'm still not so sure, but I acknowledge that I have a little over a month to enjoy each and every moment with my boy. My Jedi. Then, October will come and change our lives forever...
So now, I pray for peace. Tomorrow is another sunrise, another chance to wake up in a hospital that has running water, sterile equipment, and the most up-to-date technology, and it's another day that I get to see all the gifts God has given us. And best of all, tomorrow...
...we go home.
Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.
John 14:27


  1. So much love to you all.

  2. Wrapping you in love and prayer. "The Lord your God goes with you, he will not fail you nor forsake you."

  3. Have been reading your blog and FB updates... Thank you for sharing so honestly- I am continually amazed by your faith on this journey... Lifting your whole family up in prayer for Renn's recovery from these surgeries and for the decisions that lie ahead...

  4. John 14:27. Absolutely perfect. Now it's just putting one foot in front of the other till it's time for the next big step. Hang in there. You have everything you need. xoxo

  5. I read these accounts and it's all I can do to finish them without needing a box of kleenex. They say that firemen and police are hero's, and that's true; but you, your family, and most especially your little jedi are the true heroes. thank you for your honesty and thank you for sharing your journey with us. I will continue to pray for your family.

  6. We just had our house blessed, and the Father said that "God will be your shelter when you are home, your companion when you are away, and he will always be there to welcome you back." (or something like that). May God be with you!

  7. I found out about you and your family via Danielle's tweets. I'm praying for you and your sweet Jedi big time. John 16:33 - "In this world you will have trouble. But, take heart! I have overcome the world!"