Wednesday, January 22, 2014

Destroying the Second Death Star

Epilepsy... We hate you.

The ins and outs, the rejoicing and severe pain, the excitement and confusion. You, Epilepsy, are one evil stab to the spirit.

For those who do not live with, experience daily, or work with Epilepsy, you have no clue how on earth the rest of us do it. Let me be clear- neither do we. And I am writing today, as a mother who is at her wits end. Her heart can't take much more. Is this a post to gain sympathy, empathy, or pity? Please... Absolutely not. It is a post to share how NO MATTER WHAT, if the Dark Side is determined to win, it's not going to go away meekly. And we are determined to keep fighting.

Jedi Renn can no longer be declared "seizure free". We do not believe for one minute that his brain is
still healing, and that is the cause for his occasional seizures. In fact, we can no longer call them "occasional" seizures. For the last week, he has had one every other day, almost on cue. He had one at school that caused involuntary issues. When I arrived to pick him up, his teacher said "It didn't even occur to me that it could have been a seizure." The next day, I pulled Renn from his school. He is now homeschooled. Best choice ever.

On Friday, our Jedi had a seizure that lasted 30 seconds shy of 30 minutes. His longest to date. My ever-growing guilt screams at me in the silence of my thoughts and says, You are a terrible mother. You KNEW to call 9-11, and you sat and watched him instead. In my defense, I called UCSF to find out protocol. We'd never seen anything like it. I haven't recovered since.

On Sunday, we had taken a trip to see some family and to go to a wedding. While walking Downtown Disney (outside of Disneyland), Renn began to seize again. The emergency medication we had been told we would get, hadn't arrived before we left. But we knew to call paramedics if the seizure lasted longer than five minutes. It lasted fifteen. Of course, by the time anyone got to us, his seizure was over. They checked his vitals, and all was great except for his heart rate... That was at 164bpm. Yeah. That's POST seizure.

On Tuesday, our Jedi and I had some time alone together. Knowing full well that it was THE DAY (we were hitting every other day), I was watching him extra carefully. Sure enough, he looked at me and said, "Momma, I think I'm having a seizure." This was new... and he was right. Thankfully, it was short, and nothing like the others.

We just can't breathe. We made the decision to cut out  a portion of his brain. WE made that choice. And for what?!

Now, to say I am mad at God is an understatement. I know He has his plans for us. I recognize that we are being put through this for a reason, but I'm ready for it to go in a different direction. Whatever it is God wants us to learn, can't He teach us without messing with our baby? Renn doesn't deserve this. Hell, I do! Give it all to ME! Lord knows I've done enough in my life to deserve daily seizures and much, much more. For crying out loud, LEAVE RENN ALONE!!!!!

I am doubting all the choices we've made, of course. I'm questioning each decision I thought God was making for us, instead thinking it was we humans making selfish choices. But the truth is, that's all a lie.

I can't help but look at this face... This hero of mine, and think that God did not form him in my womb just to torture my soul. That's not my God.

I found a list of bible verses I'd written down to prepare our family for surgery, this morning. Ironic? No. Not even close. I'd like to list them, in the hopes that anyone battling something similar might remember that we who suffer are not alone.

Romans 5:3-5
More than that, we rejoice in our suffering knowing that suffering produces endurance, and endurance produces character, and character produces hope and hope does NOT put us to shame because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

Psalm 138:2-3
I face your holy Temple, bow down, and praise your name because of your constant love and faithfulness, because you have shown that your name and your commands are supreme. You answered me when I called to you; with your strength you strengthened me.

Romans 8:18 (Renn's verse)
For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

Philippians 1:6
... being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.

Isaiah 46:4
... I have made you. I will carry you; I will sustain you and I will rescue you.

Yes, I'm mad. Yes, my husband is in shambles. No, we cannot believe we are starting over with the trial-and-error medication journey. BUT, we still have our baby boy. We still see the light in his eyes, and the love his brother has for him. We still are on Jesus' heart, and our hope is built on His promises. It's no walk in the park. This crap is hard. But we remain faithful... we are following Renn's lead in his walk with Christ.

There's no denying it, Epilepsy sucks. But, it WILL be conquered. Even that Death Star was built and destroyed... twice. Let's gear up for round two.

"Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit Himself intercedes for us with groanings too deep for words."
Romans 8:26

Friday, January 10, 2014

A Short Review

Happy New Year, all!

It's hard to believe, but, Sunday marked the two-month anniversary of our Jedi's resection.

I apologize for not keeping all things current on this blog in recent weeks. We've met with some hard moments that have drained my drive to write.

I wish this post could be as upbeat as the last.

Renn has had a grand total of four seizures since the last post. In fact, three of the four happened in one week... last week, to be honest.

It's been a difficult rollercoaster of emotions because while we knew that they might come, we weren't prepared for so many. He has also been struggling with school, and that has brought us to tears. He came home before Christmas begging to not return. He said the words no mommy ever wants her six year old to say, "Nobody likes me. I have no friends at school."

Naturally, this put me into Momma KODIAK Bear mode. I wasn't having it, and I changed my way of thinking about who I was when I stepped onto that elementary school campus. I no longer cared if I made people roll their eyes when they saw me. I am Renn's mommy. Plain and simple.

We put in for Renn to have an Individualized Education Program (IEP), and I spoke with his teacher about changes that needed to be made. I felt badly for her... She was under the impression that Renn's somewhat hyper activity and distractedness would disappear when Renn had surgery. And since it wasn't the case, I almost feel as though we let her down. I realize that none of us knew what to expect post-surgery, but maybe I lead her astray and her hopes went too high. Either way, Renn needs to be taken care of while he's in school. And since I can't be with him, I need to trust that they are doing all they can. When Renn came home from school in tears, for the third day in a row, I posted this on my Facebook page... It's something that both the hubs and I feel strongly about, and it still rings true to this day:
Broken for our Jedi... He, through tears, uttered the words, "Nobody [at school] likes me."

I wish Epilepsy had a face. Something that EVERYONE could see and recognize. That way, the people that are so hard-pressed to tattle on, ridicule, judge, or dismiss those with Epilepsy could be reminded that they should instead show forgiveness, love, encouragement, grace, and understanding. I will be the
first to say that MY son doesn't need to be pitied. He also does NOT need to use his condition as a constant excuse. BUT, when you come to me nearly EVERY SINGLE DAY and tell me something ELSE he's done, what do you think that says to him? What do you think I can do, that is more than I do on a daily basis??

I hate to rant, especially here. But I'm saddened that after EVERYTHING we have said, done, supported, requested, and handed information out about, he's still feeling like no matter WHAT he does, he can't win.

I get it. I do. I live with him, after all. It IS confusing when he goes from happy, responsible, loving, and focused to the complete opposite. Last week, he was highly praised and rewarded at school. And that, was a blessing. One would think that those moments would be treasured and remembered, and maybe they are. But Epilepsy is like that... It's all over the place. It's not *just* seizures, as easy as that would be.

I wish Epilepsy was as widely understood/spoken about as say Autism or even ADD. But it's not. If it had a face, then maybe Renn would want to go to school tomorrow.

I wish Epilepsy had a face... I guess a 14 inch scar isn't enough.

Okay, so now that this new semester has started (we just ended week one), Renn had good days. And not just good days, GREAT days. So, I am thankful and am trying to remain optimistic. The hubs and I have set a goal- if by January 31, Renn is still miserable, he will be coming home to be homeschooled. And that will be that.

Now, in keeping a positive attitude and a prayerful spirit, we move on. We want so desperately to have a fantabulous year! And even if Renn's seizures come back, we are doing all we can to just keep our eyes on whatever plan God has for us. It's definitely not what we were hoping for, but somehow He's helping us through. That is something to be even more thankful for.