And Just Like That

Its been two days since I posted about Lola’s one month seizure free milestone and as I said before, you just never know when a seizure will emerge. This morning just happened to be that day.

Something seemed off about Lola this morning. She was unusually cranky, her vision was erratic (running into tables, large chairs, etc), she was extra mean to her brother and she was moaning/crying non-stop. This is a day when communication with words would have been stellar. We had no idea what was wrong. I hear parents complain that their kid talks too much and I want to punch them in the face. Too harsh? But seriously, I would have given anything for my daughter to have been able to articulate her frustrations this morning. Instead we’re left to wonder what the hell is wrong with our kid.

Are you hungry? Are you tired? Are you bored? Are your feet cold? Are your pants too tight? Do you need to potty? Do you want to color? How about read a book? Do you want to jump on the trampoline? Snack? How about applesauce? Peanuts? No? What about Cheerios? Water? Juice? Want to go upstairs? No, back down? Rob do you think she’s hurt? Does your mouth hurt? Your cheek was swollen yesterday. Is it a tooth? Are you having growing pains? Please help mommy here.

People this goes on and on.

I will admit sometimes it’s disheartening as a mother to not know what the cause of your kids cries are. I like to think that I know Lola best. I’ve been her mama for almost four years and I still am as lost as a stranger might be with her. I’m exaggerating here because she definitely communicates and only those closest to her knows what it is that she wants. But it’s not Lola’s fault. I’m sure she’d voice her words if she could. And I whole-heartedly believe that someday she will. I absolutely do. But after three hours of not knowing what’s wrong and then for her to have a seizure — I feel like a fucking failure of a parent. I wish I knew. I wish I could have somehow been able to see the foreshadowing of what was to come. I didn’t know. Rob didn’t know. Did she feel the epileptic aura? Is that why she was crying? We are only left to wonder.

It’s always instances like this morning that will help me become a better mother for Lola. Perhaps next time her mood and behavior is like it was this morning, I will know what is coming. Or it could have been coincidental. Who knows?

So she had a seizure and sure it sucks, but we’re not sad about it. It’s epilepsy. Most of us with children who have epilepsy know that we can only take it one day at a time. She made it one month without seizures and we celebrated that milestone. And next time she makes it a month, we will celebrate again. I feel as if we’re getting to the right dosage of anticonvulsants. The fact that her seizures are spreading out is a good sign that we’re on the right track with the meds. I’ll call the doctor in the morning so we can re-evaluate where she’s at and we’ll just keep moving forward.

Someday there may be a cure. Or maybe someday she may outgrow them. Or she might just have to be on medication for the rest of her life. We won’t know, but I can assure you, I won’t spend my days worrying about the future. I will always search for answers, I will always advocate and I will always try to do what’s best for Lola. But I’ve learned worrying won’t get us anywhere. I just need to keep being the best mommy I can be for my daughter — and my son.

For now, Lola is resting. She looks angelic in her slumber. She had a rough morning, but she still looks so peaceful. I was hesitant to blog about this, but we will continue to spread epilepsy awareness by sharing Lola’s story. And we know Lola’s people will rally around her with thoughts and prayers.

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