Unlikely Advocate: Hope on a Saturday morning


"We are working on it, don't lose hope."

I received that email in response to a message I sent to a House representative on Saturday morning.

I loved that he said WE.

I read those simple words and reflected on whether he realized the true hope he gave us in the minute it took him to type that email.

For just a moment, tears slipped down my face and hit the keyboard. My only witnesses were the coffee on my left and the cat peering at me through the window on my right.



I dissected that simple email for HOURS.

What did he mean?

What were they planning?

Have they thought about the long-term consequences?

Hearts and brains: I know our medical marijuana heroes very well.

They text me to check in on Jackson. They're a sounding board when I am so angry/frustrated/sad that I can't even breathe.

Senator Mike Folmer has become a friend, Senator Daylin Leach a champion.

Every single senator who voted "yes" recently to legalize medical marijuana voted for hope and a better future for the sick and suffering in Pennsylvania.

But the House of Representatives is a whole new ballgame for us.

We certainly didn't get a warm reception when our bill was given to the ONE committee that would have none of it, and our hearts were crushed.

But here we are, hope with my Saturday morning coffee.

"We are working on it..."

My heart, once again, is hopeful. But my brain is skeptical.

Will the Legislature let us down?

Will my child suffer needlessly at the hands of officials who defer to the federal government on just this ONE issue?

All ears: I attended a hearing on the Senate bill, and the Pennsylvania Medical Society came to testify against it.

The words of one man stuck out to me.

There are other options for "these children" who suffer from severe epilepsy, he said.

He was a general pediatrician, so I was all ears waiting for him to drop the bombshell on a new and amazing option I had never heard of.

Drum roll

Brain surgery.

There it was.

That is a fantastic idea, sir. A temporal lobectomy, disconnecting my son's brain lobes from each other, should seriously be an option that we consider in life.

But BEFORE trying every available treatment option?

Are you insane?

Jackson is not a candidate for brain surgery because his seizures fire from too many locations in the brain to pinpoint one area that could be removed.

I personally know three Pennsylvania children who have already had brain surgery, and yet they still have seizures. What about them?

This man knows nothing about the individual patients behind this legislation, yet he felt comfortable enough to say that BRAIN SURGERY is a better option than trying a plant-based treatment.

The fight: Families like ours are accustomed to fighting for everything.

Medication trials, therapy services, specialists, insurance coverage, adaptive equipment, school services that fit our child's needs.

Nothing comes easy.

We are prepared for that.

We justify, track medical information, keep journals of food selections and negative side effects of medications.

We advocate for our loved ones every single day. It should come as no surprise we will continue to fight for access to medical cannabis.

That email that I received on Saturday morning tells me we will not go it alone in the House of Representatives.

Maybe, just maybe, we will find a few friends among the seats in the House.

There are many others behind the scenes doing everything they can to help our cause, including my Saturday morning email sender.

"We are working on it, don't lose hope."

Make no mistake sir, you and like-minded colleagues are our hope right now.