“Everybody’s been there,
Everybody’s been stared down by the enemy
Fallen for the fear
And done some disappearing,
Bowed down to the mighty…
Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in…
Show me how big your brave is
And say what you want to say. Let the words fall out.
Honestly, I wanna see you be brave”
– lyrics to “Brave” by Sara Bareilles
My husband Dan and I met at church camp. We knew each other for years before we dated, but camp is where our friendship began. As a camp cook, my mother-in-law served me corn dogs and spaghetti meals before I even knew her name. Dan and I both had very fond memories of childhood summer camp. It was the best week of our summer; maybe the best days in our year. When we aged out of attending as campers, we went as counselors until life got too hectic for us to pencil it in every year.
As time marched on, eventually our home church took up the torch for camp administration. During that time, Dan and I also had Mercy, our first miracle baby. So, Mercy grew up in a church where camp was a central summer component in her worship circle and in a home where her parents embraced the church camp experience. We wanted her to go to camp and just knew she’d love it as much as we had. She only had to be old enough. One by one, Mercy watched her cousins and friends age into camp and get to go for their first year. It’s hard to adequately describe how much she really looked forward to getting to go herself, and Dan and I fed her excitement as much as possible.
Unfortunately, Mercy’s life changed THE year she became eligible to attend church camp. And, as every person battling epilepsy knows, uncontrolled seizures are dictators of your availability and ability to live the life you dream.
All the years of hype made the lead-up to camp that summer truly horrible. Like, Really. Seriously. Bad. If we’d been clairvoyant and had known what was coming down the pike, we would have never sold the camp experience throughout Mercy’s childhood. She was wrecked when epilepsy changed her hopes. As it turned out, the best we could do that year was to work out a day-camp option for Mercy. She could attend daytime games, but she would miss breakfast and evening activities, and she would not be able to sleep over. A parent would have to be with her at all times. The camp was not trained to handle her uncontrolled seizure condition, medically. Mercy was faced with choosing between losing the camp experience she’d dreamt about for years altogether, or to try to be content with being The. Only. Child. who couldn’t sleepover, stay up late, or wake up early, who’s mom followed her around the campus, and who couldn’t eat any meal on the camp menu.
To try to really understand this scenario, take a moment to remember an event you dreamed about getting old enough for through your own childhood. Now, when the moment arrives, add your mother’s constant presence into your dreamscape. Got that, image? Great! Now, take away the top three funnest aspects of your dream and erase them altogether. You’ll never get to feel what those experiences are like, but all of your friends will. Add in spinach and broccoli, while everyone else around you is eating a massive ice cream sundae. Then, add in a surprise loss at the event itself that you didn’t anticipate coming. (That’s what happened to Mercy at the waterfront when she became the only one in her age bracket who passed the swim test, but still had to wear a life jacket.) It would be hard for any adult, let alone a child, to enjoy such a severely altered dream.
Knowing all of the losses she’d already endured that year, and understanding how difficult it would be to be the only child there missing out on so much, Dan and I put zero pressure on Mercy to attend. She could chose to skip camp altogether, or she could chose to try to be brave, again, and embrace another mangled dream with as much contentment as an 8 year old could muster. Initially, she was too disappointed and hurt to choose to go. We accepted that and mourned her loss with her. Weeks later, however, she approached me out of the blue saying she’d changed her mind and wanted to try. She’d stare down her epilepsy enemy again and fight to live her life. Her choice to be brave meant Dan and I would have to be brave too. One of the many traumas parents of children with special needs endure is watching the dreams you have for your child, and the dreams they had for themselves, be marred by their medical condition.
In many ways, that week of camp was a disaster. When Mercy remembers it on her own, she sees and mourns painful losses. If you think it’s hard making new friends at camp, try being there only half of the time. Mercy cried driving home every night. She pulled me aside, in tears, when she didn’t know what her friends were talking about because she’d missed that part of camp. Mercy felt she’d unwittingly instigated a camp lecture about pottying before chapel (even though she had pottied before chapel), when her seizures required she leave the building for the loo mid-message anyways, and she was embarrassed. She got bummed out at meal times and at snack shack when she couldn’t have foods the other kids were eating. She completely lost it the night her favorite activity, an obstacle course, was announced and she realized she couldn’t stay for it (And, by “lost it” I mean wrestling me, wailing in the chapel about where was God, and why was all of this happening to her, and why was life so completely unfair, while every other camper and counselor were lined up outside the door smilingly getting their pictures taken. She’s not in the camp picture for that year.) She cried, got angry, and then cluster seized at the lake front when she was the only child told to wear a life vest in the deep end because of her seizures. Part of her behavior was medication and seizure driven. Part of it was normal grieving during her first year of loss. So much of that week just wasn’t pretty. I could look back on all of this mess and see only the trauma of it for her. I felt traumatized by much of it myself, knowing how the camp experience should have been if she’d been healthy.
Thankfully, though, those experiences are not all we see when we look back at her first year at church camp. In many ways, camp that week was a huge success. Mercy had a blast helping to plan and perform her cabin’s skit. She made some fun and silly friends, in the way that young kids do. She slipped, slid, and ran with her team in water baseball and capture the flag. She shot arrows and made crafts. She sang camp songs and heard great messages on spiritual disciplines. She went with her friends to a water park and rode the biggest slide. She participated in silly dress-up days. She felt loved and cared for by the counselors and staff. High school aged campers gave her hugs every day, invited her to join them for devotions, and taught her card games. Counselors included her in cabin gifts for their girls. The camp pastor listened to her and sat with her in her pain. Mercy curled up on a bunk with her own sleeping bag in a cabin with her friends, during the camp siesta. She helped friends pack their bags and clean a cabin. She played hide and seek with other children while she waited for the last campers to be picked up and taken home.
Most of all, because of the staff’s willingness to work with us and allow her to attend, I watched my child be brave, over and over, in ways other kids there would hopefully never know during their childhood. When I look back and see Mercy coming up to get her weird meals from the kitchen window, while all the other kids are eating ‘normally’, I see a girl learning to stand out from the crowd to do what she knows is best. I know it’s a life skill God can use to make her into a leader and advocate wherever He plants her in life. When we work through her morning seizures then arrive at camp just in time for morning chapel and no one else there fought like she did to make it, I see her tenacity and realize it’s growth will give her strength to never give up when life gets hard. When I see her arguing with me in the chapel on obstacle course night and daring to speak aloud questions adults can’t even bring themselves to voice to their own ministers, I see a girl not just accepting the faith of her parents, but fighting to make it her own. I know that’s the only kind of faith that sticks; the only kind that heals. When I remember our conversation curled up on the bunk of that blisteringly hot cabin after her seizures finally succommbed to the power of the rescue medications, I see a brave child fighting to understand the complex problem of evil (through the snow of mind-altering medicines) and join it to her belief in God’s goodness. I know if she can meet God inside of her tough questions, she’ll never be without Him. It wasn’t the first time Mercy had wrestled with big questions as a result of epilepsy, and it was definitely nowhere near the last, but church camp was an important venue for her to feel safe to ask them.
Would my child have had these opportunities for growing faith and courage outside of her experience living with epilepsy at church camp? I’m sure she would have as she got older, perhaps initially in more theoretical ways. Eventually, everyone is faced with the choice to either stare down the Enemy or give in to unbelief.
That first week at church camp, epilepsy placed Mercy in the uncomfortable position where another normal childhood experience had become a physical and spiritual challenge. It’s that way for her with many normal childhood passages: School. Swimming. Soccer. Theatre. Awana and VBS. Bathing. Musical performance. Sleepovers. Parties. Traveling. The list goes on and on. One day the list may include things like: Driving. Dating. Jobs. Marrying. Having Children. So I’ll be honest, some days it’s hard to be around healthy children or on Facebook, seeing them tackle these normal rites in easier ways. Some days, along with my child, I have no idea what on earth God is thinking allowing Mercy, and so many children like her, to suffer with epilepsy and other horrible illnesses. I’d be lying if I said parenting special needs and maintaining faith was easy and effortless. It’s absolutely neither.
I may never say, “As hard as it’s been, I wouldn’t trade this experience”. It’s easier to say things like that when the pain is your own, not your child’s. Maybe it’s also easier to say when God uses your child’s pain to alleviate spiritual, physical, or emotional suffering that would never have been possible without their experience: like disabled people with ministries and childhood suffering resulting in lobbying Congress for law changes. We are not there yet in our story.
Where we are, however, is trustingly planted in the palm of God’s hand. We’re in the company of thousands of other Christians who’ve suffered through the centuries not always getting to see why, but believing we’ll eventually see. We’re leaning on God’s promises. We’re learning to take the joys life has to offer, along with the losses. We’re learning not to fall for fear, disappear, or bow down to epilepsy’s terrors. We’re stepping out of the cage where epilepsy tries to make us live and letting Light in. We’re saying what we want to say and letting painful words fall out. We’re learning what it means to be brave.
Have you let a child with special needs attend a regular camp? What was their experience? How have you witnessed your special child be brave or fight for spiritual joy? I’d love to hear your story so, comment below!
Wishes For Mercy 