Friday, November 6, 2015

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

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


  1. Yes. I remember him and the entire family. I appreciate your honesty through this difficult journey. Hugs to you all.

  2. Continuing to pray for you, my friend. It is not fair that Epilepsy can trick us and go away for so long and then come back like it might think we will welcome it. We do NOT accept solicitation from Epilepsy- the sign is on the door! I am praying that Epilepsy will stay away from your new home, new life, new chance for Renn. Lots of love!

  3. We are very happy and proud to be a part of your family. You have been through so much and so has Renn. He is such an amazing boy and his parents are amazing people. He has touched our lives more than you know. There is not a day that goes by we aren't thinking or talking about him. Wishing for many, many more years
    seizure free. Please know you won't go through anything alone ever. Your family, friends and the Lord are always here with you. Hug those two boys for us and have a GREAT celebration today!

  4. Thank you for such an honest post. It resonated with my heart on so many levels. I am amazed that our hearts can feel both gratitude and anger, joy and pain, and so many other feelings all at once. I will always be the mom of special needs twins and the wife of a medically disabled husband. Those things have forever changed me, just as your journey with Renn has forever changed you. We will always be something different than we were. The work of grieving what we dreamed of will never be done. I watch my girls navigate their senior year and as much as I try not to I can't help but realize how different their senior year is from Jessica's. How many dreams will never be. And yet how many they have accomplished that we didn't know they could. So thank you for sharing your heart. I pray God will supply just what you need. I'm not gonna pray specifically because my word would imply that I understand the world you walk in. I don't but God does. I know He does, even when we don't see it or feel it. So I simply pray that God will surround you with grace and love.

  5. You and your family are always in my heart. Call whenever you need to talk, vent, cry, laugh, I don't care what. A whole country can be crossed with a phone. Love you all!

  6. You and your family are always in my heart. Call whenever you need to talk, vent, cry, laugh, I don't care what. A whole country can be crossed with a phone. Love you all!

  7. You inspired me then. You inspire me now. All of you. Here's what I know for sure - whatever happens you will rise in faith and be OK. And we will be here to be inspired and changed by you. Hang in there.

  8. You guys are so inspiring! If I go through anything at all like what you guys did (or any hardship, really), I will be happy and proud to be able to handle it half as well as you guys. GO RENN!!! :D