Dear Epilepsy

Dear Epilepsy,

I'm writing to you because you won't answer or return my calls, and you clearly won't open the door when I pound on it at 2am. I think you know why I'm trying to get a hold of you, and I think you're ignoring me on purpose.

Listen, Epilepsy...things have to change.  You have this knack for causing too much pain, fear, and anguish. There are too many men, women, and children all around this planet who deal with your garbage every single day, so it has to stop. Aren't you tired of people fighting you? Doesn't it irk you to know how many thousands of people HATE you? Maybe you enjoy the power you feel you hold over all of us, but I can promise you that reign of power is coming to an end.

For me, personally, I stayed awake all night last night, staring at the ceiling, coming up with new ways on how to defeat you. The grip you had around my son took a heavy blow, nearly 20 months ago. We were never quick to call his sudden success a full-blown victory (we're optimists, not idiots). We've always kept our eye on you. But last night, you decided to cause panic in my son. He did something he's never been able to do, though: he knew you were coming. Normally, I'd say that's a huge win over your devious ways. But, you see, you also caused him to fear... for his mother's sake.

"Renn, are you okay?"

"I'm fine, Mom." he said, looking in the complete opposite direction.

"No, really, what's going on? Why are you hiding from me?"

"Because I don't want you to be sad. And I don't want to go back to the hospital..."

You caused his seizures to officially return, Epilepsy. But what's worse? You caused him to carry the burden of worrying about how I would react. How DARE you.

I think you are deplorable. I think you are evil, you are unfair, you are nothing but the filth that clouds my faith in the darkest of times. My God is bigger than you. And after I'm done with this letter, I will remember that again.

You see, Epilepsy, our kids are stronger than you. You may never release your hold over them, but you will NOT TRIUMPH over them, or the way they've touched our lives. Sure, a few of our loved ones may have succumbed to the torment you riddled their bodies with, but that did not stop them from showing the world what their strength could do. Their bravery, even to the very end, only served as a beacon of hope for the rest of us who will not give up this fight.

We fight for them. We fight for all of them.

So, Epilepsy, I can say with utmost certainty that it's time we all break up with you. And believe me, it's not us, it's you. No, there's no cure against you...yet. Yes, there are thousands of people all over the place who believe the rumors about how surgeries are the total answer to the end of you and what you do, or that CBD oil is a one-size-fits-all solution. But, for every 1 in 26 who battles you every day? They know your game. And it's over.

Leave my son in peace. He's been through enough already. The seizure last night and the one this morning will not deter us from celebrating the days he doesn't have one. You may be trying to trick us by making them look different. We see your evilness attempting to break his beautiful spirit. But I assure you, your attempts will be made in vain. He is a Jedi... and he will not allow you to defeat him.

Leave our children, husbands, wives, fathers, mothers, brothers, sisters, grandfathers, grandmothers, uncles, aunts, cousins, neighbors, teachers, soldiers, EVERYONE alone.

This is it, Epilepsy. We're done. We're ALL done. Go back to wherever it was you came from and live a sad and completely lonely life.

Sincerely,

Jedi Renn's mom, father, and brother

And the Mothers of Natalie, Melanie, Kirsten, Aja, Kate, Collin, Eli, Noah, Kayla, Claire, Brian, Christopher, Amelia, Matt, Aiden, Skylar, and Alexis

***************** UPDATE ***********************

It turns out, that Renn was experiencing extreme dehydration, and did NOT actually have two seizures. It is well known that dehydration can be a big trigger for those who have Epilepsy, but it can also cause those WITHOUT Epilepsy to have a seizure. So, we are grateful, though on high alert, always. Thank you for your loving prayers!

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

May The Fourth Be With You!

It just wouldn't be a blog for our Jedi without mentioning this awesomesauce day!

We started our day off with lots of jumping on the mommy bed, screaming, "MAY THE FOURTH BE WITH YOUUUU!!!!"

Then we followed that up with- getting dressed in ALL of our Star Wars apparel, a short school day, and we're now focused on our Star Wars marathoning. It's serious business in this house!

Jedi Renn is still seizure free! We are nearing 14 months, and we are thanking God every step of the way. On Wednesday, we will be travelling back to UCSF for a follow up and to discuss the probabilities of weaning him off his medication! This momma is freaked out by that a bit, but, we know that keeping him on a medication he doesn't need isn't exactly great for him. So please pray with us as we venture on this new journey. We'll keep you posted!

Happy Star Wars day!!

 Please tell us in the comments: what are YOU doing to celebrate? We hope you're grabbing hold of your inner Jedi, and having a blast with all the possibilities!

As always, May the Fourth Be With You!!

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