Monday, October 28, 2013

Grid Placement: Day 1

I didn't sleep last night. Come to think of it, I haven't slept much since my mom passed away, in June. Last night was especially hard because I laid awake staring at my first born. I watched his face twitch in his sleep, the same way it did when he was laying in my arms, super tiny and new, nearly seven years ago. I couldn't help but think what on earth are you doing to your baby?! Before I knew it, it was 4:30am. Time to get the road on the show (as Mom would always say :) ).

Renn woke up in such a great mood. Almost immediately, he shouted, "I'm ready! Let's get rid of these seizures!"

Tears, people. And just when I thought we had none left.

As we got in the car, it was absolutely freezing. I should have figured, because the wind was immensely powerful as it howled so hauntingly, last night. We happen to be a family that revels in the cold, so I whispered a quick "Thank you" to God, as I sat in my seat.
My mind was filled with so many things. The memories of yesterday, where we just had FUN in San Francisco for the first time ever. Seeing my kiddos marvel at the sharks above their heads in the Aquarium of the Bay, play with all the crazy do-dads in the Exploratorium and have a seagull swoop down, steal E's corndog stick, and swallow it whole, made for a thrilling Sunday. But my mind was also stabbing my heart with the many "what-ifs". And those, ladies and gentlemen, are NOT what you need running through your thoughts.

We got to UCSF right on time (6am) and things went fast. Before we knew it, he was on a bed, in a gown, and we were being interviewed by anesthesia and all the attending staff. 7:30am was drawing near and Eli, God bless him, was doing the best he could... but let's be honest. He's four. Up before dawn. In a hospital. Unsure of what in the world is happening.
It was a might bit stressful.

Then, it was time for Renn to go. Dressed in my white "bunny suit" and blue hair cap, I walked our brave Jedi into his operating room. He turned around to say goodbye to Daddy and Eli (who were
both having a difficult time obeying the DO NOT ENTER UNLESS AUTHORIZED signs), and we heard their voices fade behind the thick, metal door slamming shut.

At that moment, Renn's little hand tensed in mine. He
hesitated when he saw all the stark, sterile white. Once I got him onto his bed, the nurses talked about the "giggle gas" and how it smelled like the grape flavor he chose, earlier in the morning. His eyes widened. He didn't like the mask on his face, but after a few breaths, he began to hold still. His eyes met mine and he cried, "Momma...".

I was broken, he was fast asleep.

God, please. Please let this be the answer you have been trying to give our son...

For the next NINE hours, we heard from the
nurses in the OR off and on. It was painful. We just wanted to see him. Sure, we kept hearing great things, but it didn't matter.

Finally, Dr. Incredi-Surgeon walked in the door. He looked so tired... He said (with a giant smile), "All is good!" We talked about what to expect- the swelling, weakness on the left side, the recovery, He let me know about the loose bone flap, and how it's basically free floating. It has a hinge on it for swelling of his brain (so that the expansion will not cause Renn any issue), instead of being screwed or stapled together. However, Renn "should be back to normal ASAP".

Makes no sense to me, either.

We got to walk into Renn's beautiful room, an hour later. Our angel JEDI was laying so peacefully, and sound asleep. When he did finally open his eyes, he smirked, and went back to sleep. Of course he would. It was a see?-told-ya-I'd-be-OK kind of smirk. I wanted to smother his face with kisses.

Daddy and E left, with great hesitation, and I spoke with all the same staff who have become more like family to us, than JUST nurses and doctors. Renn experienced some nausea after eating two ice chips over the course of fifteen minutes, so we opted to let him sleep lots more. His determination to be "normal" right away was not lost on me, however. I am married to a VERY determined man, and I myself have issues with patience and relying on others for help. Wait, that's not news to you?  ;)

He is sleeping peacefully, and is showing signs of major swelling already. I'm unsure how to handle it, but I believe with all my heart that this is it. Why? Because a cute Jedi told me so.

Please pray for seizures, now. We need as many as we can get, so we can get the process started. If we get a lot of them, we will face the 2nd surgery on Friday.

Thanks, friends. Having you there to "listen" and pray sure is a giant blessing for us. God bless you all.

Be still, and know that I am God...
Psalm 46:10


  1. It's so hard to pray for seizures, but will do. I hope your week goes well before the next surgery.

  2. You are in our thoughts. I hope the doctors get the answers they need soon. Hugs to all of you.

  3. Praying for lots of seizures, and comfort, and strength. Lots and lots of love to your family, Bethany! Thank you for sharing from your heart. You write beautifully, with so much emotion. Big hugs to you!

  4. I'm praying that this passes as swiftly and smoothly as possible for you!

  5. Praying for sleep, and for seizures.

  6. Praying for sleep, and for seizures.

  7. Praying it will all be over soon. Thinking of you!

  8. Praying for your family, esp for Renn! God can heal!

  9. Keeping you all in our hearts and hoping for seizures. You guys have a great love in your family and you can get through this together.

  10. Thinking of you, and that you get what you need. So much love for you.

  11. Hi Bethanny,

    I just found your blog through Pinterest yesterday. Our daughter Ava will be having grid placement surgery next Monday at Children's Hospital in Milwaukee. Ava is 8. We adopted her 2.5 years ago from China. Soon after bringing her home, we found out she had had a massive stroke either in utero or at birth. Now She has uncontrolled seizures stemming from the occipital lobe on the left side that are spreading to her temporal and parietal lobes too. Her docs have recommended removing nearly the entire left side of her brain. I think our family is going through many of the same feelings your's is experiencing. Please know we are thinking of and praying for Renn and your family.

    1. Hi Nancy! PLEASE email me!! I would also like to add you to my FB support group page

      Please get in touch with me so I can walk with you through this!

  12. WOW- you are living a mom's nightmare and offering help to others at the same time. Amazing, Renn's strength doesn't fall far from the tree.

  13. God is with you and your family at every moment. We are all thinking of you constantly.

  14. I can't wait till this is so far behind you that you need to look back at your post to even remember the details. Prayers will continue. Perfect seizures for Renn and comfort, and healing for all of you.

  15. I am glad that Renn is doing okay. :) Thank you for posting about it. I am worried about him.

  16. Praying with tears in my eyes and an aching heart: Dear God, please grant Renn a season of seizures so that with Your help, Your doctors can identify and resolve Renn's condition beyond everyone's expectations. Thank You for this special family and the way You have and are providing for them. Please grant Renn, Bethany, Rick and Eli unsurpassed and incomprehensible peace, rest, strength and yes, even joy as You dwell with them in the midst of their storm. We are in the boat holding on with them and looking to You to calm the winds and seas and bring us to land. We look forward to celebrating together in Your name. You are our one and only Incredi-God and we are praying in the name of our Incredi-Savior Jesus Christ and through the power of his Incredi-Holy-Spirit. Amen.

  17. Oh my goodness, Bethany! What an ordeal for you. You are so brave and strong, and such a good mom to your little jedi. And you wrote so movingly about all this. There's a book in here for other parents who have to go through this and you are the one to write it. Praying for you and Renn and all your family. (((Hugs)))