2 Years and 100% Honesty Later

I've heard it said that often times when you go through a hard, gut-wrenching moment, you go into shock. As typical as that is, what I wasn't aware of is how long it might take for that shock to wear off.

For me, it's taken two years.

Since October 28th, I have cried every day. Every. Single. Day. I have experienced the emotions I wouldn't dare allow myself to feel, two years ago. I have caught myself staring off into the distance, sick to my stomach with the memories that are clearly haunting me. It's been downright painful to endure Facebook's usually oh-so-awesome "On This Day" posts that it shares with you (you know, the posts you've made in years past). But why? Why now, of all times?

I've watched our Jedi do things that I couldn't have fathomed him doing at this point in his life. He's active. He's making new friends in his new school. He's excelling in Language Arts at such a fast speed, he seriously wants to compete in Spelling Bee events. But best of all, he's HAPPY.

So, why can't I be?

~ November 6, 2013 ~

Two years ago today, Renn had his resection. That evening, I wrote this post after one of the most difficult days/weeks/months of my life. Remember that my mother had unexpectedly passed away just a few months prior to these surgeries. I look back, and I have no idea how I functioned. 2013 was hard.







Now we sit in our beautiful, mountain fixer-upper home. Our Jedi is a third grader at an incredible school. Easy E is a first grader, at the top of his class (wow... E is the exact same age as Renn was when all of this went down. That makes no sense to me). But they have adjusted well. and I can't thank God more for allowing that to be the case.

Renn hasn't had a seizure in nearly 20 months. However, over the course of the last week, we've noticed some very familiar behaviors starting to resurface. Is that a sort of PTSD that I have that's causing me to see things? Maybe. But the Hubs is seeing them too. So, we are making a plan of attack, to see if we can't prevent something from occurring. Folks, it can't come back. He's worked too hard. He has too many insecurities that he battles now, because of his age and knowing what he knows. If the seizures come back... I just... I can't.

Renn hummed a little Happy Birthday to his "new" brain as he was putting on his backpack this morning, and once again, tears fell from my eyes. I have so much to be thankful for. I have so much to celebrate today (and believe me, when I pick those boys up from school, we are sooooo going to party-- and better than Ross and Chandler ever did with Gandalf on FRIENDS. ;) ). But if I'm going to be truthful, I'm not sure I'm able to feel the same sense of gratitude that most would assume I'd feel. Maybe I'm jetting through the stages of grief at a bizarre, fast pace, because these days I'm pretty angry at the moments that Epilepsy has taken from our family. I'm angry when I see another one of my Epilepsy Mommas (the FB group I run) announce that their kiddo couldn't attend another school function because a seizure has caused them to sleep through it. I'm angry that I'm making typical 6 year-old memories with my youngest son that I still can't have with my oldest. E can color, write, comprehend. Renn still struggles. E makes friends everywhere he goes, Renn tries with all his might, but it's SUCH a chore. It's getting more and more difficult to ignore that Epilepsy robbed us. And I'm furious and broken about it.

The fact is, two years after I celebrated that my son remembered me after 50% of his right temporal lobe was removed, I'm angry that we ever had to do it in the first place. Yes, there were lessons to be learned, new families to bond with, and faith to be tested. But I hate that it had to happen the way it did. You, our dear friends and family, stepped up and carried us when we had no more strength. You showed us time and time again how God shows up in the most desperate of times. And in these moments, I remember all of that. I firmly grasp onto how God lead us where we are now, and how He kept us strong...and kept Renn with us. I am grateful... but it hurts now more than ever.



I hope that in the last two years you have thought of Renn; That you still hold on to specific things he has taught you. I hope that one day I will really be able to see Renn's story the way you all might see it. For now, I am going to make cupcakes and put on a happy face for that Jedi and his amazing brother. Because no matter how angry I am that our family battled what we did, I can clearly see through those boys' faces that it was worth it. And if we don't make it to 20 months seizure free, 19.5 was far better than nothing.

...and now

Then...

I believe in this verse, even through times of struggle (like what I am currently going through). And two years ago today, I posted it as our sheer beacon of HOPE. God is with us, even through our anger and confusion. As always, I am thankful for that.

"For I know the plans I have for you,' declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future."

Jeremiah 29:11

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

Epilepsy Awareness Month 2014: The New Normal

It's hard to imagine that one year ago today, the grid was on... and this Jedi was offering his Halloween candy (that was so awesomely smuggled in by Daddy and E) to the technicians who were watching over him.

We started off November, aka Epilepsy Awareness Month, knee-deep in the destructive path that Epilepsy carves. I remember so distinctly that we were recovering from the absolute terror that was Renn's near-death experience. His adverse reaction to Cefazolin almost took him from us. But, like the true Jedi that he is, he pulled through, and lived to fight another day.

Today, we started off Epilepsy Awareness month exhausted... from an epic night of Trick-or-Treating. Then, we jetted off to soccer in the rain, and we're now following that up with movies and cuddles on the couch. It's unreal. God has transformed the world we knew into this vast land of wonder, joy, and excitement. Granted, not everyday is easy. There is still an immense amount of fear (especially with me) that the evil seizures will return. But for now, they are at bay. And we never hesitate to thank our Heavenly Father for each moment that is seizure free.

In September, just four days shy of Renn being 6mos seizure free, our Jedi did something... odd. At soccer practice, he began to slowwwww dowwwwwnnn. It was like watching a real-life person pretend to talk/walk in slow motion. It was bizarre. I was quick to panic and lable the event as a seizure. Both Renn and myself left soccer practice that night just weighed down with disappointment. I couldn't even encourage him, because I felt that somehow I had failed him. Luckily, the hubs came in like the lionhearted man that he is, and helped us through it. When I called his Neuro team the next day, one of his doctors said she was incredibly confused by the description of the event and said we shouldn't be so quick to assume it was a seizure. She said he may have been overheated and dehydrated, and that his brain may have wanted to seize, but couldn't. Sure enough, it was 105 degrees outside that day, and I don't think he'd had enough water.

Needless to say, he's not had anything since. So, it's with great pride and thankfulness to God that we can say that Renn is now...

 7.5 months seizure FREE!!

Between soccer 5x a week, Cub Scouts once a week, homeschooling, and church... the new normal in this house is simply trying to keep UP with these two active boys. Thank you, God, that we still have the opportunity to do such a thing. We just came back from his post-surgical Neuro phych evaluation at UCSF, where we finally got to reunite with the Mighty C. It was a tearful reunion for me, as I watched the Jedi jump into the arms of the nurse he still refers to and talks about every single day. We've been back to UCSF about six times since surgery, and the Mighty C hasn't been there! So, this was an incredible gift for Renn... and hopefully the Mighty C as well.

As we embark on Epilepsy Awareness Month on this blog, prepare to hear from a couple more families who are journeying through it all, and prepare to learn a bit more about what it's like to live with Epilepsy.

Here we go! If you have a special way you spread Epilepsy Awareness, let us know! Or, if you have specific questions that can be addressed, contact us and we'll get to answering you right away.

God bless you all... Here's to being seizure FREE yet another day!

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...

In a Galaxy Far, Far away...

Hello, everyone. This is the first post, of a new blog that I hope will generate lots of love. This blog will be all about our adventures dealing with our 5 year-old son's Complex Partial Epilepsy.

I cannot promise you that it will all be laughs, fun, and games. But, I can promise that it will be real.

A quick background:

My husband, Rick, and I have been married just about eight years. Renn came first, in March of 2007, then Eli joined us in February of 2009. We are a highly active family, that rarely slows down. Sure, we take time to smell the roses, but it's usually done in a drive-by fashion! We love to be outdoors, and to be together. We live in the Central Valley, in California. We hope to someday move somewhere a bit more spacious, but for now, we're thankful for where we are.

Rick has a job that we can't talk about, and boy-oh-boy, are we proud of him. He loves the Lord, and that's his best quality. He's strong, funny, has his degree in Biology, played trumpet in the Fresno State marching band, and can handle pretty much any task placed before him. To say that I am a lucky gal, is an understatement.

I am a children's book author, but am also honored to be a stay-at-home mom. My family is my world.

Eli is a vibrant child who has been getting the short end of the stick, lately. But, I don't think he notices. He's a firm believer that he will rule the world one day, and I can see it coming true. He's strong and funny like his daddy, and is so lovable, his hugs will rock you to your core.

And that brings us to Renn...

Renn. Loves. Star Wars. And so, he is our little Jedi. No disrespect to Mr. Lucas, but Renn is a bigger and better Jedi than Yoda, himself. He is brave. He has a strength within him at 5 years old, that I simply do not understand. His journey with Epilepsy began in March, and you can read all about it HERE. But for those who followed back then, now is the time to share what happened yesterday.

As most of you know, yesterday we traveled to UCSF for what we thought was a simple introduction to his new doctor, and a consultation for a better Video EEG. However, when we got there, the story played out quite differently.

Long story short (okay, I'm skipping the introductions, and each time we begged,"Boys, please sit down!"), the doctor told us her plan. First, she was going to look over Renn's MRI and EEGs. If she thought that we needed to re-do them, then that would be the first step. If not, or after we re-did them, we would do one of three things.

1. We would go straight to surgery to remove anything she was able to find on the MRI. The first MRI showed nothing, but in the event that the UCSF MRI was better, and she saw something, then we'd take care of it.

2. (And this is where it gets quite scary) We will to something called a MEG (can't remember what it actually stands for, as I was about to throw up at this point in the visit), which is basically a magnetic view of his brain so we can pin point where the seizures are coming from. Or, we'll admit him to the hospital, take him off his meds, and inject a dye into his body every time he has a seizure. Once we pin point the general area, we move onto the next step...

3. They will take him into a two-part surgery. First, they will remove part of his scull, and attach the electrodes to his ACTUAL brain, to determine the precise location of the seizures. After that (not sure if it's weeks later, months later, or if it's during the same surgery- as I was pretty much a blubbering mess while she explained this), they will have a second surgery to remove whatever it is that is causing all of this.

The kicker? The surgery only has a 50-60% chance of changing anything.

That's. It.

We now have a tough decision to make. How do we choose between allowing our little boy to undergo such a HUGE surgery, or not giving him the chance at a "normal" life?? If he continues without surgery, he will not get a driver's license. He will not be able to grow up and become a Police Officer, like he so desires. And that kills us. We've simply run out of medications, now... So, we're taking on Master Yoda's infamous advice...

 

"Do or do not. There is no try."

So, as we go along, please join us. Please pray for Renn, and all the millions of others who are battling this disease. Ask others to do the same. And share Renn's story! In fact, please share any information that you feel I've given, that could help someone you know.

 

Renn is a Jedi, alright. And he's going to pull through... God has the biggest and best plan set in motion for his favorite Jedi. He says so, in Jeremiah 29:11. And we're grateful for that promise.

 

Thank you for joining us on this journey...

 

 

 

...more to come.