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!!


  1. Praying for your family and sending big hugs. Oh how I wish there was something more I could do. I hope you are able to get some sort of respite and take a small break.

  2. I'm praying for all of you. Please take care of yourself. I ended up with PTSD due to trying to manage the cacophony of behaviors/anger/rage difficulties of three of my adopted treasures. I did finally accept my own limitations and sought out very regular respite help for one of the children from county services. It has been a blessing. Through absolutely no one's fault, the needs and circumstances they were creating were tearing us apart individually. It could not be sustained on a long-term basis without damaging each person in our home. We trust the Lord, and He sometimes He chooses to provide through others outside of our household. We cannot always do it all. Maybe you've already arrived at that conclusion and taken action. I was too determined, and I almost waited too long. You are a rockstar in my book! God bless you.

  3. No easy, pat words of pseudo-comfort to offer from here - nor would I want to do so. But please know that I ache for you all, especially Mistress Mary and her mama.

    Praying for positive change to arrive, and to arrive quickly and stay long - and very thankful for the blessing of Mary's strong, stubborn, unquenchable spirit.

    Hugs and good wishes from
    Susan in Kentucky

  4. I found your blog right as you were bringing Mary home and have followed along her journey. I hope that the answers to her constant seizures can be found. The pictures you post of a smiling Mary show that her spirit is infectious if only it could stay that way. Prayers for you all

  5. I've been checking frequently, hoping for an update on Mary. I'm so sorry she has to bear this, and for the pain it brings your hearts. We believe God is bigger than even THIS and cling to Him to shepherd Mary and all of you. It's beyond fathoming how she could have made it where she was before she came home. I'm so grateful she has a loving family; her shelter in the storm. xo, Kelly M

  6. I have been thinking about you and praying for you so much these past weeks.

    Will continue to do so.

    Much love!

  7. Just a thought, not for publication:
    If all these meds with their horrible side effects do not stop the seizures, could you try to go med-free for a while? With the exception of medication that you have to give to stop *status *seizures of course.

    Feeling helpless with you.
    Big hugs!

  8. It was hard to read this but good to know the reality. Thank you for sharing! I'm praying for your whole family.


Loving words from kind people make our hearts glad!