“I just love the children, and I want to spend time with them,” Chanda said the other day as she was reflecting on her inability to do all the things with our children that she enjoys. Exhaustion, stomach upset, and more, are currently limiting her ability to be present. It’s unfair and sad.  Epilepsy is a thief, robbing the person with epilepsy of “normal” joys, and epilepsy is a thief, robbing their family of the stability and joy that we all wish to share.

Chanda works hard to create special moments and projects with the children. I work to keep the family moving and healthy - (happily) taking on a disproportionate amount of the chores, while trying not to make Chanda feel “irrelevant.” I work to ensure the kids know how she is doing, without knowing too much, and that we work together to support our family’s strengths and make space for the children’s difficult questions and complex emotions. It’s a balancing act.

It’s not always like this - not usually, and we pray that Chanda will be back to her strong, vibrant self soon. In the meantime, neighbors and friends help with rides, child care, and more. We’re on a tight rope, and a little too far to the left or right can cause us to topple. Luckily, our safety net catches us. It’s tempting to skip the kids’ swim or hockey or scouts or musicals etc., but we keep going to keep them healthy and strong too. And when we’re late or not entirely prepared, it’s so comforting when people understand or support us. We’re so grateful for the balance our community helps us find until we're safely back on solid ground.