A rock and a hard place

Victoria Tkachuk by Victoria Tkachuk Additional Needs

Victoria Tkachuk

Victoria Tkachuk

I'm from the Midwest region of the United States and I have four children, three neurotypical daughters and one son with dyskinetic cerebral palsy....

After a year long reprieve from the worry of seizures, the worst has happened – my son had another one.

Henry's seizures are particularly strong tonic clonic, radiating from his eye down to his toes over twenty minutes or so.

They are excruciating to watch; I can't imagine how it feels on his end.

I do know that, with his rescue med administered, his seizure subsides but the effects of the medicine knock him out for twelve hours or so, and he isn't back to his normal personality until the following day.

So now the question comes to me, should I start him on regular, daily medicine, or continue with a rescue med only? I'm stuck between a rock and a hard place, and it's not a fun place to be.

Sometimes, the decisions we make for our children are easier to navigate through.

Often, this depends on the possible outcomes; when either choice will lead to a positive result, deciding when or how to do something is simple. But there are so many times when the outcome could go either way – should we choose private school or public?

Should we move to a new place or stay where we are? Is this friend a good fit for my child, or should I steer them toward another playmate?

The deciding can be overwhelming. I can't predict the future, so how can I know what to do?

Well, we can't, obviously. But we can make an informed choice for our kids because we know them, and ourselves, and what we value.

We can rest assured that school, neighborhood, and friend choices can be altered and adapted as our children grow and, ultimately, our kids will be all right.

Then there are the rock and hard place decisions, the ones that don't have a clear outcome or goal, or one that is unattainable.

This is where I'm at with my son's seizure plan.

If I put my son on daily medicine I run the risk of altering his personality irrevocably.

Seizure meds alter one's brain, that is their intention and result. My boy – bright, cheerful, communicative, funny, cooperative and social – may turn into a different child entirely.

Or maybe not. The point is, I don't know.

However, when we only have a rescue med it means he is going to suffer from seizures, and when he does he will suffer both during the event and after.

Something I've had to come to grips with in my adult life is that sometimes, there isn't a good option.

You are simply choosing the lesser of two evils, and it's going to feel horrible. There is no way around it.

This is the responsibility you take on as a parent and the best decision I can make for my child is to accept that responsibility.

Rock, hard place, or not.


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