When God Says No {A New Wrinkle in Our Journey with Epilepsy}

Nothing could have prepared me for the moment when I watched my daughter fall to the floor in convulsions. Helpless dread sweeping over me, I tried to get across the room to her as I watched her smack her head against the desk and then crumple to the floor. Time stretched out before me as I moved to cradle her and roll her on her side until the seizing stopped. Gently I called out to her over and over again as if somehow I could bring her back to me. And, yet, for those 60 or so seconds – was it really only seconds? it felt like hours to this mamma’s heart – for those seconds, my girl was lost to me. Locked inside a fog in her own head, she couldn’t hear me or respond to my calling.

I don’t think I’ve ever been so scared in all my life.

When the convulsions stopped, she laid there so still. Although it was a welcome respite from the seizing, it was too still and quiet for my liking. I knew that she was still breathing but I had no idea how long it would take before she came back to me. How long would it be before her soft hands uncurled and her long, lean body relaxed and her beautiful, blue eyes opened? I didn’t know. We’d never done this before. Her seizures had always been the “staring spell” kind before.

I know I’ve never been so scared in all my life.

And, yet… God. He made us so that a sort of mommy-adrenaline kicks in and you remember things to do and not to do. Why did I remember to turn her on her side? I don’t know. I just did. A calm, action-taking rationale took over as left her alone for a moment to call 911. Though it was 4:45 in the morning, I remembered our hotel name and room number. I was able to recount silly details to the EMT.

It was just the two of us alone there for a dance competition. My husband was in another country. Her neurologist was over an hour away. And, yet, I didn’t freak out. The calm in my voice surprised me as I heard myself speak to her lovingly and reassuringly as she started to come-to. She was completely disoriented at first and then irrational for a time but I stayed composed. I didn’t lose it when I realized her blood was soaking my leggings from her head wound (she’d need 5 stitches in the back of her head to close it up) or that she’d bitten the heck out of her tongue. God was there with me, giving me speed and clarity as I packed up the room, loaded the car, and checked us out. As we raced across the turnpike to get to our neurologist, I finally realized how tense I had become when I looked down at my hand 45 minutes into the ride and saw that I was still clutching that stupid turnpike ticket instead of slipping it into the visor like usual.

It wasn’t until I was in my car hours later and she was all stitched up and we were headed home that I finally spoke with Rick. As he prayed with me from an orphanage in Costa Rica, I finally cried. There before our Father – miles apart but together in His holy presence – I cried with my husband and best-friend. Hot tears finally rolled down my cheeks, as I let God’s grace wash over me and sensed His nearness. “Not our will but Yours,” we told Him. We would trust Him in the days ahead even though everything about this sucked.

I’m still processing… as is my girl. And, Rick in Costa Rica. And, our son with him. We’re all trying to process it emotionally. As well, there are decisions to be made about our new normal. Medications and protocols and a 504 plan for the school, etc. Lots of unknowns. But there are a few things I can say with certainty in the midst of it.

1. Being a Christian doesn’t mean we’re exempt from crappy things happening. We live in a fallen world that is in rebellion against the One who called it into existence. Just because we follow Him, doesn’t mean He will spare us from the realities of life here. That doesn’t change the fact that He loves us or that He is always perfectly good. We’ll keep asking Him to take this epilepsy away from our girl but if He doesn’t, we’ll assume that He will make something beautiful come out of all of it. Does that mean we won’t have doubts or questions or even feel mad at Him at times? Probably not. We’re wrestling with all of it. It’s not easy to accept when God’s answer is “no,” as it appears to be right now. But, we’ve got to wrestle in faith, mindful of Who He is. So, for now, we’re trusting that “the steadfast love of the Lord never ceases; His mercies never come to an end, they are new every morning.” It was true thousands of years ago when King Solomon first penned it and it’s true now.
2. Having community around you makes all the difference in the world when crisis hits. Our church family is amazing. Seriously amazing. They have rallied around us in every way – both in word and in deed. Praying, encouraging us with kind words, providing meals, stopping by with smoothies since Mad needs soft foods while her tongue heals, running errands, coming to play games with Madison so I don’t have to leave her alone, listening to me process, etc. My own mom lives far away so my MIL readily dropped everything to come stay with us for a few days. My sisters are checking in often. My BIL’s family sent flowers to lift our spirits. It feels good to be wrapped up in that kind of love and warmth.
3. There is a kind of surrender that happens when you realize you can’t control everything. This is the not the girls’ week that Mad and I had planned while our boys were gone. This is not the dance competition she had envisioned – she never even made it to the stage and her team had to adjust just hours before their performance. This is not the outcome we had expected in relation to her epilepsy. We thought she might be outgrowing her Absence Seizures. This new normal is not something I can control – medication will help but seizures happen and I can’t wrap my girl in a bubble to protect her from every possible outcome. I am NOT enough. Jesus is. And I will surrender my fears and hopes to Him, looking ahead to the joy set before me.
4. Though I am the mom of an epileptic and there is much comfort in talking to other moms who are in the same boat, that is not my identity. My identity hasn’t changed. It is Adopted Daughter of God, Follower of Christ. My life will change some and I’ll have to manage my fears and realities, but this is not the primary thing that drives my life – or hers. We’ll add this thread to the complex, multi-colored fabric of our lives. But it’s just one more part, not the whole.
5. Grief and emotional processing comes in waves. On the one hand, we’re all doing really well. On the other, we’re all wrestling with some strong emotions. It’s OK for us to take time to work through it all – especially Madison.

For now, we’re enjoying being wrapped in the warmth and love of the family and friends our good God has placed in our lives.