Epilepsy- the stages of grief: Sadness and Anger

VBS was very hard for me this year. Last year Aggie thrived in that situation. She participated, she made friends, she loved every second of it. She was not the problem child in the room. She did not require 1:1 care. She did not get distracted from the Bible stories by a compulsive need to eat a sticker.

She had her normal moments this year, of course, and I am so grateful for those. But some of her behaviors are becoming unmanageable. And I really mean UNmanageable- no amount of training or preparing or disciplining will help with behaviors a child has no control over. Some things we just survive, and when that gets too tough or too disruptive, we just go home.

It’s those little things that other people probably hardly notice that break my heart lately.

I know other kids have trouble listening, other kids put odd things in their mouth, other kids feel anti-social at times, other kids like to climb on everything and wash their hands with toothpaste (ok maybe not that last one) but when I see Aggie doing these things it is just so NOT her. It is epilepsy, or the drugs, or both. It is THE PROBLEM reaching into her tiny little head and changing things around, confusing her and all of us, making her think and do things she normally would not. It makes me mad and want to cry all at once.

Part of me is still waiting for her to just SNAP OUT OF IT already! But Josh says, “the Aggie we knew before epilepsy is gone.” The other night we were talking about how Aggie used to love interacting with others, but now spends large amounts of time alone doing quiet, sometimes repetitive activities. Her Grammy said, “that’s how she is now and that’s ok.” My heart does not want to accept that, but it is true. We just need to learn to love her this way.

I love Aggie. I love the Aggie I know, the one I gave birth to while daddy was in Iraq, the one who loves starting parties and having fun and teasing and drinking chocolate milk. Now and then I get glimpses of that Aggie, though most of the time I am taking care of other Aggies: There's wild and out of control Aggie, tired and pathetic Aggie, confused Aggie, drunk and happy Aggie, mildly autistic Aggie, antisocial Aggie, emotionally fragile Aggie, and close-to-normal Aggie, just to name a few. I never know how she is going to be from hour to the next. And I still have hope that things will get better when we find a way to manage her epilepsy- but for now, this unpredictability is part of our daily lives.

As I thought about this the other day, a ridiculous song popped into my head. I'm sure you know the oldie- “If you can't be with the one you love, honey, love the one you're with!”

It's quite an odd song to have for a theme song, especially for a pastor's wife! But it fits my life perfectly this month- plus, it makes me laugh!

Lord I have prayed a million times for you to fix Aggie, yet the storm rages on. Your thoughts and your plans are bigger than mine- help me to trust you through this trial, to remember that you are “in the boat” with us. I see changes in Aggie that break my heart, but the fact is, this unpredictable, changing Aggie is the one I am called to love and to serve. Lord make my heart bigger, help me adapt to her new needs, help me to accept where she is right now and love her has she needs to be loved today. In Jesus' name, Amen.