Beyond IS #2: Helpless

Looking back to when this journey started, I never knew how the path would play out. I knew a little about epilepsy, but nowhere near what I know today. And I’m still learning. New medications. New treatment options. All with one goal - seizure control - a term that seems like a far fetched dream right now.

Once Emma’s Infantile Spasms were under control, we always were told that epilepsy was a possibility, but never did I think it would play out like this.

If it’s been an option for Emma, we tried it. We haven’t hesitated.

Countless medications in an effort to get that right balance - can’t even remember all the names or dosages. The ketogenic diet. Not the weight loss fad that sounds enjoyable - the medically monitored strictly enforced one. I don’t think I’d be able to follow it as an adult, not sure how Emma managed it for 9 months. CBD. Tried it a few times. Again. No success.

Then there was surgery. Never did I think surgery was an option for epilepsy. But it is and has been. Before the age of 10, Emma’s had three. 2 for her VNS Therapy (implant and then a battery replacement) and brain surgery.

So now, just over two weeks post surgery, and she’s still an enigma.

Have you ever looked into your child’s eyes and felt helpless, truly helpless? Knowing that any wish you have for an end is just that, a wish. That the thought of a prayer is pointless because it won’t change the situation. All you have left is hope. Hoping that the reset button is pressed tomorrow so that some sense of normalcy can return. Times where the tears are backed up and knowing that if and when they come out won’t change the outcome, but might just elevate your kid’s anxiety.

​While the path always changes, there are moments where I feel like we are walking in a circle.

​Yet, I would walk that circle every day of my life with our little warrior.

​- Daniel