Broken

I am broken.

I thought I was broken when I found myself pregnant at 18. I thought I was broken we had our car wreck when I was pregnant with Maggie. I thought I was broken when Lainie had her big seizure and all the damage after. I thought I was broken when I had a miscarriage. And another. And a bleed and preterm labor with John's pregnancy.

But that was nothing.

Now, I am broken. I am in the bottom of pit, so dark that the sunlight can't reach me. I am so far down, even the kids' joy can only bring a little smile to my face. I have lost my way.

I almost lost my son. Again. I could have prevented it if I would have checked his fever before I went to sleep. I could have prevented it if maybe I had let them put tubes in his ears last summer. I am a nurse, dammit, I should have known he was getting sick. I could have prevented it... in theory.

But, in fact, only God could have prevented it. And didn't. And that is why I am broken.

Why does God feel the need to make my child suffer through another seizure, with a possible epilepsy diagnosis, with the damage that those hellish electrical fire storms cause.

Why does He allow things to happen to Jay and I and our family, again and again, to cause more pain, more suffering, more struggle.

I am broken. My son is broken. My daughter is broken. Even our finances our broken. And I don't know how to pick up the pieces.

I don't know what works, what will make it bettter. So far, I just know what doesn't help.

"God doesn't give you more than you can handle." That's total bullshit. First off, how can I trust a God who inflicts pain willingly just to test me? Secondly, I am way past the point of being able to handle one more feather weight but I just got a truck load dumped on me.

"What doesn't kill us makes us stronger." That's what I thought last January when John had his first seizure, and couldn't walk afterwards. I thought, "it'll be okay. He will be okay." I don't feel that way now. And that lovely saying? All it is saying that either you'll end up dead, or you will survive. Well, I'm barely surviving, so the alternative is what?

I have hit my knees. I have sobbed. I have screamed. I have been silent. I have prayed. I have hated. I am angry.

I am broken.

But how do I pick up the pieces? Maybe tomorrow will hold the answers.

Typical Sunday

Let me give you a glimpse into my life. Today, I:

Worked until 1:30 am.

Woke up at 8:30 and got my family ready for church

Church at 10:30

Lunch at Wendy's

Helped lead 4-H meetings at 12:45 and 1:30

Home for nap

Up at 4

Family party at 5:30

Home at 9

Bedtime

Showers for kids still awake

4-H paperwork

Watch tv show with my husband 

Bed at 12:45

Someday I'll wonder how we made it through these days.

And done. For today

So if you aren't familiar with the test, an EEG basically measures the brain's electrical activity. They glue 26 electrodes to your head and watch while you sleep, see a strobe light, and blow a pinwheel. To increase the likelihood of seeing seizure activity, you must only get four hours of sleep the night before the test. 

The pinwheel exercise sure looked like it triggered some activity during the EEG but we won't know for sure until Friday. Either way, we are most likely looking at a medication change. 

And I'm happy. Happy to know we might be able to make life a little easier for Lainie, easier than the last year has been.

Sleeping beauty

EEG part 2

Neurologist appointment was good. The doctor listened to my concerns looked not just at her physical symptoms today but also behaviors we've seen at home. They even added her recent IEP assessment to her medical record. They think we will need to change meds but will wait for the EEG results to decide.

And so we wait for 1230.

EEG day, part 1

Early morning selfie

Double tea for mom the driver 

Kindle in the car to stay awake for the 200 mile trip.

Now for shopping, you know, just to stay awake of course.

The face of epilepsy

 

Tonight's face of epilepsy. Lainie has to stay awake until midnight. Tomorrow we travel to KC for her annual neurologist appointment. And, because things at school haven't been great, she is due for an EEG to determine if her type of seizures has changed. So far, her only documented seizures have been tonic-clinic seizures, but her EEG has always shown "generalized seizure activity" in her brain. We will go see if she has added absentee seizures to the list.

And so tonight she must stay awake until midnight. At 4 am I will wake her up and keep her awake until her 1230 EEG. They want her tired so they can capture seizure activity. It's a painless test but still a pain. 

But I will tell you that this test prep is a lot easier now that she is nine and not two, like she was the first time we did this. She is reading Harry Potter and the Half Blood Prince, hoping to finish it by midnight. Then tomorrow I'm hoping she can watch the movie as I drive or while we wait in Children's, to help her stay awake.

I love this girl with all my heart. I am praying for no more challenges for her. She has enough as it is. And so do we.

But tonight, it's all about a late night reading. Not too bad of a prescription.