Wednesday, August 21, 2019

Mary Mary....

Mary Mary, Quite Contrary....

How does your garden grow?

With silver bells, and cockleshells and pretty maids all in a row.


True for contrary....

but the silver bells and pretty maids.... hmmm.....

More like tsunami waiting to happen!!

She may look perfectly adorable but in reality - Little Girl is a hot mess every single minute of every single day!

I would love to give a positive, feel-good Mary update filled with adorable pictures and smiling faces.

But the reality is our little girl battles the epilepsy BEAST every single minute of her life and many days it wins.

Sunday was a 'win' day for the beast.

We had to rush her to the ER for rescue meds because ours just were not cutting it. 

We left 12 hours later with a wild child on our hands as the rescue meds bring out the raging, screaming, biting, scratching beast in her.

3 days later I'm writing this with a weary and sorrowful heart.

Standing by and watching what her seizures do to her is hard to take. Dealing with her drug-induced raging is exhausting and draining.

Her little body is battered and bruised from the constant falls that are never ending.

And the meds she takes means she's not always the sweet, adorable little girl in the pictures.

She's quite contrary most of the time.

And she suffers with her seizures.

We have done the best of everything out there. But each time we think we are making progress and the seizures are easing, her little brain reroutes around our best laid plans.

Her contrary brain thinks it is programmed to seize. And we are helpless to stop it.

It's hard.

She has rare great days. She has occasional good days. She has normal bad days. And she has scary days where she completely tanks.

It affects her ability to learn.

It affects her relationships.

It affects her behavior.

It affects her speech.

It affects her sleeping and eating.

It affects her ability to ever be left alone ever.

She's too dangerous.

She doesn't realize how dangerous she is.

Which makes her even more dangerous.

I want so badly to write positive words but our reality is a step-by-step, one-day at a time, trying this and trying that, bumping around in the dark.

We are on edge most of the time with her. We have learned that there is no normal when it comes to Mary's seizures. We never know when she will go into status. When we think we have figured out a pattern to her status she changes the pattern. When we think we have figured out her seizure types she changes the seizures. When we think we have seen the worst... well... this past weekend she let us know we haven't seen the worst.

Yet through it all, despite it all, she gets back up again.

She is resilient.

She is tough as nails.

She smiles in the midst.

Her contrary spirit may drain us to bits by the end of the day but it is how she survives and comes out each day with a smile on her face. She isn't going to let epilepsy rule her life.

She has a garden to grow.

With dreams of bells and shells and pretty things!

And by golly, that Little Girl is going to make it happen!!

Tsunami or not!!