A Preacher, Doctor, and Your MIL
You’re floating adrift on a life boat with a preacher, doctor, and your mother-in-law. Who gets thrown over board first? (Obviously, not your MIL.)
A man breaks into a drug store at night, harming no one and taking only the medicine that will save his son’s life. He gets caught and you’re on the jury. Do you convict him?
These questions can be fun to banter about because they’re so philosophical and hypothetical, or at least they used to be.
Aidan and I had a mostly typical neurology appointment two weeks ago. “Ok, so, no change. See you in 6 months.”
We know that looking through the lens of seizure world, Aidan’s seizures are no big deal. They don’t last long, he never loses consciousness, and they’re not the bad kind of seizures. Except that they are a big deal. He increasingly hurts himself, or comes close, because of his seating position. They’re stealing his independence, in eating and sitting. And we hate them. I don’t care if it’s just 30 times a day for 5 seconds that I gasp, or swear, or my heart stops a little. I hate them.
The only thing different about this appointment is that we walked away with rescue meds. Standard precaution for a kid with persistent seizures, one that he may never need. WHAT?? Rescue as in, 911 isn’t fast enough and I might have to save my own son’s life and how long can I stand to watch him not breathing?? Ok, so 5 seconds is clearly a looooong way from the 3 minute mark that I was told to watch for, the moment I should consider rescue meds.
But still…I shouldn’t have to rescue my son. He shouldn’t need rescuing. I don’t want the meds in my house because I don’t even want to consider the possibility of using them and I want to throw the seizure beast overboard first.
Then I went to fill the prescription. $800. Yes, we have insurance and it’s covered (thank-you tax payers.) But if we didn’t? What risk is too big? How far away are 3 minute seizures from 5 second seizures? Do I really want to find out? We’re relatively new in seizure world and I know that most people are paying for several meds to control seizures which aren’t temporary. This is an ongoing and overwhelming cost to them. Some brave moms have testified before Congress to gain access to life saving seizure meds that were costing $40k. Really? Making the time to go to Washington and making tons of discouraging phone calls in the midst of keeping your child alive?
The What would you do to save your child’s life line gets pretty fuzzy the closer you get to it.