ONE. YEAR.

Excuse me... cough, cough... It's so, cough, dusty around here...

Welllllll, hello! Yes, it's been a long time. Trust me, I feel guilty about it. There's been A LOT going on!




In November, Renn decided he wanted to have a birthday party... for his BRAIN. We had one alright, and boy oh boy, was it SPECIAL! We had a grand event that included so many of YOU, it was unbelievable. The love, the hugs, the watching-our-boy-run-around-and-laugh-and-play... Just magical. We even had some special, incredible friends come and join us from a galaxy far, far away...

 

Our special thanks to The Twin Suns (http://www.thetwinsuns.com)  and the 501st Legion,
for coming out and making our Jedi's dreams come true!!

We also got the news in December that Rick's job transfer was granted, so we've been in the throws of trying to move. We're also still homeschooling, and that has turned out to be the BEST decision we could have made for our Jedi and his super smart and oh-so hilarious little brother, E. But, that means that this momma doesn't slow down. EVARRR.

Okay, so now that you're mildly caught up, I'd like to get to the very reason why I am posting. It's hard to do this without sobbing and blubbering all over my keyboard, but I need to give it a shot.

Friends, for those of you who have been going through this journey with us for THREE years (as of 2/26/15) now, I have the best news. Your prayers, your words of love and encouragement, your notes, gifts, pictures, shares, donations, hugs, and your pourings out of pure love, have led us here...

Can you believe it?

Are you sobbing? Blubbering?

Join the club.

I woke up this morning in a rush. The boys and I woke up late, and were running around in a frantic- ARRGGGGG kind of way, trying to get out the door to Community Day (our 2x a week meet-up with teachers and other home schooled students). I will admit, I was feeling too guilty- since I'd forgotten to make St. Patrick's day all special for the kids (I was lucky to have some green shirts clean for the kids!)- to pay attention to much of anything . But Renn, being the amazing Jedi he is, paused, grabbed my hand, and made me look at him. He raised his eyebrows and said, "You know what else today is, right, Mommy?" Instantly, I started to weep.

My boy... Seizure FREE?

I got to make a giant announcement in front of all the other 125 students and their parents, this morning at Community Day. Even though not a single one of them had journeyed with us through his tests, medications, surgeries, they erupted in cheers and celebrated with him. I watched the parents enter in the words "Purple Day" on their phones' calendars when I mentioned March 26th. I saw the support of a boy whom they barely knew, but they loved earnestly.

To sit here and thank each of you who has known and loved our family through all of this... heavens... I'd be here all day. But know that every time we look at our Jedi's face, we see your hearts. When we hug him, we feel your hugs. We are always and forever grateful for your kindness and support.

We are also indebted to the doctors, nurses, and staff at UCSF Benioff Children's Hospital. They became the instant family we needed in those dark days. We are thankful for their guidance, talents, grace, and love.

Now, today our Jedi is ONE YEAR seizure free. Does that mean he is cured? No. No it does not. Could the seizures return? Yes, that monster could awaken at anytime. However, we believe in a mighty God who has far greater plans for Renn than we could ever, EVER envision. So we will hold on to the promises we are given, and those will keep our hearts thankful and jubilant. It might not be a seizure free life that Renn leads, but he got one year, and we'll take it. We'll remember each and every moment that God gave us. Each smile, each soccer game, each laugh, and each milestone that our Jedi reached. We'll remember the encouragement that he gave others, and the joy on his face when he saw his presents on Christmas morning, and the prayers... we'll remember the prayers that his baby brother prayed every. single. night; The ones that begged God to "let Renn's scar heal, and to keep the seizures away..." What a true blessing, indeed.

By the way, this isn't just a celebratory week because of this monumental day, but also, Renn turns 8 on Thursday... EIGHT.

And to think, there was a moment when I didn't know if I'd see him turn seven.

Praise you, Father.

One year down, friends. Let's keep 'em coming!!!

"For the mountains may depart

and the hills be removed,

but my steadfast love shall not depart from you,

and my covenant of peace shall not be removed,"

says the LORD, who has compassion on you.

Isaiah 54:10

Good News Throughout The Galaxy

Freshly back from our 6 month post-op follow up appointment at UCSF!

 ~ Okay, I know his surgery was 8mos ago. We pushed this appointment back a bit. Can ya blame us?~

 The news is fantastic! As we walked out of the elevators from the parking garage on Parnassus, we ran smack-dab into a nurse we had on one of our various stays. She all but squealed with delight as she hugged us and asked for the latest update.

We felt at home all over again, but this time, in a peaceful way.

As we walked into the Pediatric Neurology clinic, I watched our Jedi lead the way. I couldn't help but remember the first time we went through that arch way... But I'll save that for another post.

We saw one of our many favorite Neurologists. We sat and talked for ten minutes about how our summer was going and how nice the weather is in S.F. in comparison to the 110 degrees it was back at home. Eventually, she asked a question that I had honest to God forgotten would be asked of me.

"Any seizures?"

That's right... SHE. DIDN'T. KNOW.

I let Renn tell her. It's his victory, after all.

He said, "No seizures. None. Are you proud of me?"

She looked at me with awe and hope (as I'm sure she couldn't quite believe my sweet boy), and I said, "Not since March 16th."

She cried. Then she jumped up and double-fisted-knuckle-bumped my boy who was BEAMING. She texted Dr. Genius to GET IN HERE, RENN IS HERE, and he came quickly,(later telling me he expected bad news). When she told him, a giant smile spread on his face. "Glorious. That's my boy." is all he said.

All in all, it was the best appointment we've had since we started this journey. I praised God the whole way home, and hoped that Renn's little light shown bright in that office, enough to give someone hope.

We go back in November for his ONE YEAR post-op appointment, and his post-op Neuropsychological Exam. Can't believe it.

However, in the ever-growing saga of our Jedi's life, we have something fun to share!

The Epilepsy Foundation of Northern California is having a remarkable event at Children's Hospital Central California on August 9, called Living With Epilepsy. It's going to be a fun day of great information and resources for families living with Epilepsy in one way or another.

The cool news is that our Jedi (and the rest of us, too) has been asked to share his journey with the audience! We are SO honored, and Renn is incredibly thrilled. We're getting pictures together of his surgery process- that includes the good and the bad, just like you've seen here. We are also trying to think about the most important details to discuss with others. 

Renn wants kids to know they don't have to be afraid.

Of course he does.

We are eager to meet other families like ours! So please pass this around (especially if you live in/near the central valley of California, or know someone who does!) and join us, because we'd love to see you! Everyone is welcome. Please just click HERE to register ahead of time so we know how many to expect!!

And starting in August, this blog is going to host different stories of families living with Epilepsy. Many ladies from a support group I started called "Moms of Epilepsy", have decided to bravely face the challenge of sharing their struggles, pain, success, and fears. The goal is to ED-U-CATE this world, and truly help spread the word that Epilepsy is a condition that needs more attention! I hope you'll join us...

Thank you for your constant love, prayers, and support, friends. God is so good...