Sunday, March 27, 2016

epilepsy doesn't care that it's Easter

It's Easter Sunday.

 I've prepared a fun Easter trivia game for church. Like every Sunday, we arrive early to get things ready for our together worship. We have a few minutes to play memory while waiting for our church family to arrive.

Trevor has a seizure.

One minute he's playing Memory. Happy. Engaged. Triumphantly winning.

The next minute he's staring into space while his lips smack together rhythmically. 

20 seconds pass like this, then he's back. But not quite. There is always a fog after a seizure and he's acting foggy. 

I ask him if he feels okay. I always ask. Even though he always says the same thing. I suppose I'm hoping that one day he'll be able to tell me. To help me understand the storm inside him. Like always he says, "I don't know." but wants to keep playing memory again. So we do. 

 A couple minutes pass before he starts crying that he feels sick. He's going to throw up. 

 I race him down the hall to the bathroom. He's crying and asking for a bath. "Bath feel me better. Bath feel me better." he's saying while leaning over the toilet acting still disoriented and confused. 

 My heart is sinking and my stomach churning. 


I'm supposed to be by my husband's side today. And every Sunday. Our family is a church family. My husband is a pastor. I have a game. There might be visitors. His sister is playing Ode to Joy on her guitar for the first time in public. I want to be there! I want to stay! 

 But my son has epilepsy and epilepsy doesn't care. Epilepsy is part of the groaning. 

 For we know that the whole creation groans together and travails together until now. And not only so, but we ourselves, even having the firstfruit of the Spirit, also groan ourselves in ourselves, awaiting divine adoption as sons, the redemption of our body.- Romans 8:22-23 

I try to comfort Trevor and convince him to stay. I want to stay! He's just crying and saying, "Go home my bed." 

 I'm collecting my things and gathering him up to leave as the first friends start arriving. I wonder if they can feel the stress and groaning oozing from me. 

Trevor has perked up a bit at the idea of going home. He even gives a high five to one of his favorite guys. 

Then we're heading to the elevator. All the while my heart is being shredded. Torn in two. 

 In the car he's quiet. We're almost home when he says something. I can't hear him because my heart and mind are screaming too loud, so I ask him to say it again. Around his binky, he says, "I tell Jesus sorry I no go church today." Tears begin pooling but they don't spill. They just sit there in my eyes. I'm waffling between feeling sad for us and proud that he'd even think to say sorry for something. I don't speak though. A few minutes later he says, "I'm tired sick, Mom. I need rest down." I still don't speak. Tired sick is a new kind of sick, Mom. I feel tired sick." "I know, Buddy. We're almost home." I finally choke out. 

He's snuggled on the couch now. With his binkie, his blankie, Dave the minion, watching tv while he "rests down" and hovers between wakefulness and sleep.

There is no happy twist to this story. It's just an honest glimpse into how my son's epilepsy affected our Easter Sunday this year. I refuse to manipulate our life and turn painful moments into positives. Pain has a purpose. Candy coating is offensive and devalues the point of pain. I won't do that. This is real and raw and groaning. It doesn't shake my faith, though it breaks my heart. Instead, it activates in me that deep Hope for the day when sickness and sadness are eradicated from our lives. It opens my heart to the deep longing for the day of Redemption. This is part of the Redemption story. The Easter story. These groaning moments and the Hope that they will not last forever.


Your Therapy Source Inc said...

Very powerful and you are an amazing mother! Your words " It doesn't shake my faith, though it breaks my heart." can be very hard for people to understand sometimes, myself included, the difference. I plan on using your words to help during moments of crisis. Thank you for your honesty.

I highly recommend you share this post to The Mighty website. I think other parents would benefit greatly from your perspective.

Anonymous said...

I completely agree with you that acknowledging the reality of pain and mess in life is healthy, and acceptable. It sometimes makes other people uncomfortable to hear because they aren't sure how to respond, but it is healing and necessary and part of life's journey to process pain.

happy's mommy said...

I so appreciate your words of encouragement! Of course, my heart is, like, no one wants to hear this sappy junk. <3 This growing and waiting and groaning part...sometimes it's very very heavy. I'm reading Little Pilgrim's Progress with the kids and I keep telling myself to keep my eyes on the celestial city's light...