Breathe Mary Breathe

It caught us off guard.

What used to be scary had become commonplace. Status epilepticus. Non-stop seizures. Mary's style. 

Unique. Different.

We had a routine.

One of us would hold her, speak softly to her. The other would draw up the meds.

She had been sleeping peacefully next to me in bed.  The next minute she was in status. No pre-seizures. No warning.

It had been happening like that more and more so that in itself didn't scare us.

Concern us, yes. But we knew what to do. I called Rob on the intercom. 

I carried her downstairs and laid her on the couch and held her while he mixed her meds and gave them to her. And we waited. 10 minutes. That's how long it would take.

We were pros at the hard. We were used to waiting. 

Except this time we weren't.

Instead of the regular rhythm of status it changed.

Suddenly Mary slipped from her wacky style of seizing into a full tonic-clonic seizure.

From one to the other as fast as we could blink.

Her breathing stopped and so did we.

Her body rigid and convulsing.

We weren't prepared.

Fear enfolded us as we began to rub her chest. Breathe, Mary, Breathe. Her lips turned blue. Then her face. Breathe. 

Please, Dear Lord. Breathe.

Time stood still as we waited. And begged. Foam coming out of her mouth.

Then a gasp. A gasp again. A gurgle. teeth grinding. And breathing started. Shallow. Quiet. Long pauses between each breath. The rescue med suppressing her shallow breathing even more.

We weren't prepared.

Nothing can prepare.

It happened again a few days later.

And then again. And again.

We are no longer blindsided. We are a bit more ready but less comfortable. Her seizures are changing and we can't keep up.

Yesterday her VNS was turned on. It sends electrical impulses to the brain through the vagus nerve. It goes off every 5 minutes. We have a magnet that we can also use to set it off ourselves.

It was turned on but is currently at the lowest strength. Over the course of the next 6 months it will be increased bit by bit.

Yesterday morning she went from breathing quietly beside me to status. Seven minutes later she slipped into the tonic clonic seizure we have now, sadly, come to expect. We set off the VNS but didn't expect any results. It will takes weeks or months for it to work effectively.

It's a bad movie that just seems to keep getting worse.

Lately her drops have had her falling head first. Twice yesterday she slammed her face into the ground. Her helmet is no longer protecting her from the angle of the falls.

Both times blood poured. Her face is now bruised and puffy.

In between seizing and falling she is desperate to be just a typical little girl who thought making mud pies with the ash in the ash bucket a total blast.

So for a while her bruises and cuts and scrapes were mixed with dirt and ash.

And we could laugh at our messy-faced little girl.

With the cut lip. And the bruises.

And cry inside.

Breathe.