“Nothing could have prepared me for the moment when I watched my daughter fall to the floor in convulsions. Helpless dread sweeping over me…”
These are the words I penned a year ago after one of Madison’s seizures. At the time, I thought her seizures were the scariest thing in the world. (Side note: they are pretty darn scary.) What I didn’t know at the time was that six months later we’d be back in the same ER fighting another, more sinister attack on her precious mind. I didn’t know that I’d feel even more helpless and lost and lonely… and afraid.
This time the hospital room was completely stripped. No blankets from the warmer here. I sat beside her bed. Sometimes she would accept my comfort. Others, she recoiled from it. Her wound wasn’t an obvious gash on the back of her head but a gaping hole, hidden under layers of emotion and circumstance. No nurse could come and stitch this one up.
As I searched her face, I could see that she was hanging on by a thread. Desperate. Truly at her wits end and wondering if it would just be easier to call it a day and go home to Jesus.
And so began a journey that I had never, ever envisioned back when we first held our tiny, perfect girl with her shock of dark, porcupine hair. Back when I could swaddle her up and hope that she’d sleep a long enough stretch that I’d get to rest too. Now, I would be the one awake – listening, worrying, praying desperate prayers to the only One who could pierce through the darkness and save my girl. Now, instead of trying to tiptoe out of her room, I was making my bed on the floor in her room and hoping I’d be alert enough to hear her if she tried to get up or hurt herself. Now, instead of babyproofing the house, we were suicide-proofing it – doing our best to hide or confiscate anything that could be used for harm. (Which, by the way, is nearly impossible and in the back of your mind, you know it.)
The whole thing launched us all into an intense, emotionally and physically exhausting time. I look back on the Fall of 2017 and it’s a bit of a surreal fog. I’m still trying to sort through it. Rick was pastoring a large, rapidly growing church. I had just taken a job at the same church and was teaching a woman’s Bible study of 300 women. Our son was in the first semester of his Senior year with all the demands that it brings. Madison’s life was very full between school and her dance company and her involvements at our church.
At some point in the midst of all that, it just became too much for our girl. An introvert, she feels and processes intentionally and deeply. She always has – she doesn’t cry like her mom but she needs space to reflect. At some point during her tween years, that emotional side of her gave way to mild depression and acute anxiety. We chalked it up mostly to childhood angst and life maturity issues. We took it seriously, but we also thought that time and growth would help her learn to cope. We were told as she hit puberty that her epilepsy would augment it. It’s very common for epileptics to deal with anxiety and depression because of the areas of the brain that are affected by the seizures. We tried a few things like counseling and intentional time together. It was tough at times but she seemed like she was managing fairly well given that the teen years are hard to navigate no matter what.
But in the Spring when her seizures shifted from the staring spell kind to gran mals, we had to change her medicine. Our options for a teenage girl were limited to two – one could cause depression and suicidal ideation, the other could cause a life-threatening rash.
Rick had just done a funeral for a young man who had committed suicide while on the medicine that we ultimately chose. We were close to that grief. But, we were told it was more rare. We knew lots of people who used Keppra with few side effects. It was the medicine the neurologist felt most confident with, so we picked it and watched her like a hawk for the summer.
What we didn’t know was that she was hiding the effects it was having on her mind and heart.
When school and dance ramped back up in August, it just pushed her over the edge. Which is how we ended up in the ER in October.
Why am sharing this with you here? Do I need your attention or your sympathy? Am I oversharing? No. We’re good. We’ve been surrounded by an amazing group of elders and staff at our church who prayed for us faithfully during that time. We have extended family and dear friends who walked with us down that hard road. God was (and is) our nearness and our strong tower. I don’t need your attention or sympathy. I’m sharing because I’m following Madison’s lead in letting her story be used as a tool to draw people into closer relationship with Jesus – our great Savior, Redeemer, Healer, and the Lover of our souls.
For most of this ordeal, we have been silent save a close circle who would hold us up through prayer… because Madison is her own person and we wanted to honor her need for privacy. This is only my story by proxy. But, a week ago she shared her story at Porch (our church’s ministry for high schoolers) and gave me permission to share here so that I could encourage other moms.
For now, listen to her story and then come back tomorrow for some of my thoughts as a mom walking through this time…
Madison’s Story (4/22/18) from Porch (Redemption Chapel) on Vimeo.
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.
