Guest Post by Shawnda – What Epilepsy Has Taught Me

Epilepsy. It’s not what we signed up for when we said YES to adoption. There are little check boxes that you check the things you are ‘open’ to that make me CRINGE…cringe, I tell you. I know it’s necessary, but it nauseates me. Really. I feel sweaty and can hear every noise in the room as I try to make my ears open wider that they might hear His voice. How can we say no to any of the boxes?

I don’t recall if epilepsy was on the application over 7 yrs ago when we filled it out, but I can tell you the thought of it would have scared me! My only association with epilepsy was from the show Diff’rent Strokes. Do you remember the episode (you would have to be my age or older most likely!!) where Arnold is in the park watching the mime clown do tricks? She falls, and starts seizing. Arnold was super freaked out by it, and I was too. It’s one of the only episodes I remember, and it was my least favorite one (I was an avid fan in my elementary age yrs…strange, I know. When my husband was watching Duck Tales, I was watching Diff’rent Strokes! I had 2 much older sisters, what can I say?).

So, my association with Epilepsy was one of fear and being freaked out.

Samuel’s first seizure, I freaked out. It was horrific. His 2nd, 3rd, and 4th seizure, I freaked out. I was not getting used to the idea of having a son with seizures. It was wrong and not what we ‘signed up for’. I wanted to do anything that would ‘make it right’.

His seizures became consistent, so we opted for medication. They were controlled for TWO yrs. TWO yrs. Then, while I was in Uganda, he had his first seizure after being on medication. I freaked out (and I didn’t even see it). The thought of him having a seizure was horrific and that I wasn’t there to comfort him made me question what we were doing in UG in the first place (because I was freaked out …not because I really doubted we were supposed to be there).

That seizure was the first of many more. Even on meds and too many increases of dosages to count, Samuel’s seizures continue to plague his failing body. But…I don’t *freak* out anymore.

Why?

It’s not because I’ve gotten used to them. They will never become ‘normal’ for us – they aren’t ‘normal’, and it’s not who he is for eternity. It’s completely earthly and of fallen nature.

Hoever, over a year ago..I don’t remember when exactly, I felt the Lord ask me if I was going to trust Him with Samuel. A bit shocked (of course I trust Him with Samuel!) , I thought back over the year Samuel had seizures, and the 2 years he didn’t, and when he started having seizures again. The 2 years he didn’t, I believed I was trusting the Lord, but that’s because I really believed he was healed. I believed we were going to ween him from his meds at the 2 yr appointment, and he was going to be seizure free. Epilepsy (or that weird seizure season) was going to be a part of his history. It was going to be a tiny part of his story, and a tiny part of our family story.

But I was wrong that he was healed. We never got to ween him. And last year, by His grace, I saw that I wasn’t trusting the Lord with the precious ‘prayed for’ gift HE had given us.

I considered the way Samuel responds when he has seizures. In his seizing, he has mostly always been able to communicate with us (only a couple of grand mal seizures where he could not at all). He’s awake, he can somewhat talk, he is able to respond, he can kind of walk (though we don’t encourage it!). Samuel is very aware during his seizures, and he can tell me when he’s having one. He talks as if he’s had a stroke, and he drools. His legs get shaky. He gets a headache. Then a stomachache. It happens in that order, and after about an hour, he pops off the couch like somebody put a jumping bean in his pants, and it’s done. Just.like.that.

Samuel doesn’t get scared, he doesn’t cry, he doesn’t do any of the things I’ve done over the years!

He’s matter of fact, focused, calm, patient, TRUSTING. So, when I felt the Lord working in my heart, I asked Samuel, ‘Samuel, when you have seizures, how do you feel? Do you feel scared?’. ‘No, I just don’t like them, but I’m not scared. I know God is with me.’ Exhale. Weight falling off shoulders. God is with us.

The Lord started working in my heart then about trusting Him with Samuel’s life and believing that God can heal him (and praying for that with perseverance and faith), but also believing that the Lord could use this very thing in Samuel’s relationship with the Lord, and possibly how the Lord may use him one day.

My outlook on epilepsy has gradually changed. My outlook on adoption has certainly changed.

With epilepsy, I don’t know what tomorrow will bring. I pray, I beg God’s mercy on Samuel’s life. And I trust Him that He has given us epilepsy as a GIFT. Epilepsy is costly (meds, MRI’s, neurologists, EEG’s, etc). Epilepsy is still painful to watch, though much more peaceful. Epilepsy is not eternal. Epilepsy is God’s way of bringing Himself glory in Samuel’s life and our family over the last 7 yrs and however many more to come. Whether He heals Samuel completely here on earth or Samuel has unreasonable seizures for the rest of his life, God’s name be praised!

And, finally, epilepsy IS what we signed up for.

When we adopted, we said yes to all of our son. We didn’t say yes just to the parts we expected. We said yes to all of him and all he brings to our family. The part of adoption we didn’t expect, were the costs under the skin. We thought race was going to be our biggest challenge – we were prepared for those costs (as much as we could be). We were prepared to make the ‘sacrifices’ (I would call them privileges) of raising black children. But we weren’t prepared for the undefined, untold, unknown challenges that lay beneath the skin. If we didn’t check the box, then we didn’t have to ‘worry’.

BUT GOD….but God had other plans. And I’m so thankful He did. His choice for us and for Samuel IS just right.

Shawnda lives in Texas with her husband, Jason, and their 5 precious children.  She blogs about adoption and her family and other issues close to her heart at Spirit of Adoption.