Next week, we begin another big transition in Hudson’s epilepsy journey. This will be the fifth medication we’ve tried to help control his seizures. For a short time, he’ll be on four medications at once—not something we’re really thrilled about, but entirely necessary. This approach will help keep him safe as he weans off one medicine while the new one needs time to reach therapeutic levels in his body.
Transitioning seizure medications puts anyone in the situation on edge. There’s a very real risk that it could trigger more seizures or even entirely new types of seizures. We are praying with everything we have that this transition goes as smoothly as possible.
Being a medical parent means constantly living in a world of impossible decisions. We had to make an impossible decision to get to this moment. These are the kind of decisions that keep you awake at night, replaying every “what if” over and over. Since Hudson’s refractory epilepsy diagnosis, I’ve thought about this countless times. Do we try a medication that has major possible side effects but reduces seizures? Do we consider surgery that could cause harm but might give him the best chance of seizure control? Do we keep pushing ahead, experimenting with new treatments, or do we prepare ourselves to accept that this might be as good as it gets?
These aren’t abstract questions. They’re the reality we face every day as we weigh risks and outcomes, trying to choose what’s best while knowing there’s no perfect answer. Medical providers arm us with data, probabilities, and predictions, but they can’t give us guarantees. There’s no magic potion to make his seizures stop. So, we decide with prayers under our breath, our best knowledge in our minds, crossed fingers, fragile hope, and the desperate wish that we’re doing what’s right for Hudson.
And then there’s the hardest part. Every choice we make isn’t for ourselves; it’s for Hudson. He can’t tell us what works, what feels wrong, what hurts, or what comforts him. It’s up to us to figure it all out, to act on his behalf without knowing if we’ve got it right. There's something profoundly heavy about shouldering that kind of responsibility.
These choices are relentless. They feel impossible at times, and yet we keep making them. Because Hudson needs us to. Because not making a choice simply isn’t an option. That doesn’t mean the fear, the doubts, or the guilt gets any easier to manage; it just means we somehow make a way through them, holding onto the hope and faith that we’re moving toward better days.
To someone outside of this world, these choices likely feel unthinkable. And honestly? They feel unthinkable to us too. But this is our life. These are our struggles, and this is the path we walk every single day. Thinking them, making them, living them—even when they feel insurmountable.