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

16 comments:

  1. Bethany, Thank you sharing, yet it brings me to tears. We are also going through some hard times, as my hubby is battling stage IV colon cancer. I feel so many of your feelings. Thank you also for sharing the bible verses. But hope, love and faith will prevail. Be strong.
    Kit Grady

    ReplyDelete
    Replies
    1. Oh, Kit... I had NO idea. Yes, hope, love, and faith. Don't you go forgetting that. :) And also, I'm here for you... always.

      Delete
  2. I am so sad to hear of Renn's setback. It sounds like sheer torture. Your family is in my prayers and heart. Renn is one tough cookie just like his mama.

    ReplyDelete
    Replies
    1. Thank you, thank you, Darshana. You are far too kind. We are blessed by your prayers and love!

      Delete
  3. Even though this is sad, it's such a beautiful post. It's way harder watching my children suffer than anything I go through myself. I love the way you ended with hope. {Hugs!}

    ReplyDelete
    Replies
    1. Thank you, Hannah. Sometimes hope is the greatest thing to hold onto when you're about to fall apart... Thankfully, our faith brings us a lot of it. :)

      Delete
  4. I hate that you are questioning your decision. Very sorry that Renn is having seizures again and you all are dealing with this. Praying for you all.

    ReplyDelete
    Replies
    1. Thanks, Stacy... We'll get through this!

      Delete
  5. Oh Bethany, bless Renn & your family...I am so broken for u, & your family...I promise to continually petition God on your behalf for Renn. I know how helpless I feel when my Bear has a seizure...I can't imagine the magnitude of how u & your family feels. Please know I am praying, also...God makes good out of the bad..sometimes it just takes a while. ((hugs))

    ReplyDelete
    Replies
    1. Sometimes it does... And as I learned today, it's all about what you do during the waiting period. Thanks, friend. :)

      Delete
  6. I just wanted to say that I am so sorry, and that your son and your family are in my prayers.

    ReplyDelete
    Replies
    1. Thank you, Sharon. That means a lot to us.

      Delete
  7. I have been praying. Every time I go to church. I will pray more often, and mention Renn's name, so He can send some help. :) This is a shocking post. I hope you can figure this out.:(

    ReplyDelete
  8. Just for the record, I hate you, too, Epilepsy. You're mean. Ugh. My prayers continue to destroy your meanie self forever.

    ReplyDelete
  9. This is heartbreaking news. So so sorry. Many prayers going your way Bethany.

    ReplyDelete
  10. I'm so sorry, Bethany. I continue to pray.

    ReplyDelete