Friday, January 24, 2020


We are home.

I won't lie.

The last 24 hours have been beyond brutal. 

Watching our little girl have non-stop seizures over and over again is hard.

Watching our little girl react violently to the drugs they give her is on an entirely different level.

She was feral last night. I spent well over 5 solid hours with a child who was scratching, biting, hitting and screaming. If I came too close she would try to scratch my eyes out. It wasn't until close to midnight that she finally fell into a deep sleep of exhaustion. They moved us out of the ER about the same time and after we were settled in the room, I curled up in bed next to her and held her. It was the only sweet moments we had the entire time she was in the hospital.

Today she is only a few degrees better. We are home and she is still raging. Everything sets her off and we are helpless to help her. The doctors tell us we should be grateful the seizures stopped. Grateful isn't exactly spilling from my lips right now. I want them to come be with my child to see the wreckage those drugs leave behind. 

And while Rob was washing the junk out of her hair this afternoon she had her first seizure since the massive dose of drugs thrown at her yesterday.

Respite from seizures is short-lived around here.

We are searching for the whys at this point. There could be many and none. On the paperwork they sent home they said it could just be the progression of the disease. I want to rage against that. I want my raging voice to join hers. 

Not for her.

Not for her.

We want a reason.

A reason means we can fix it. A reason gives us direction. A reason gives us hope.

Their words are too final and hopeless and I rage against them.

We just will keep trying.

And try not to despair.

And keep hoping and searching and praying and fighting for our little girl.

Even when she tries to scratch our eyes out.


  1. My prayers are with you, dear one. I am so very sorry. I hate seizures. I hate the drugs. I hate the side effects. Praying, praying, praying.

  2. I'm sad, and praying. Thank you for loving her. We love you.

  3. How absolutely heartbreaking! Praying with you for those answers, that healing!

  4. Praying for precious sweet Mary and the rest of you all.

    God bless you much.


  5. I'm so sorry that Mary is struggling so with this monstrous thing that seems to have invaded her, and hope and pray that the "real" Mary will emerge soon and stick around. Do her recent scans show any change(s) that might indicate what's causing all this? I feel and share your frustration at the lack of certainty about her situation and the causes, and hope that both the frustration and the lack of certainty change very, very soon.

    Praying for better days (and weeks, months, and years) ahead for Mary and all of you.

    More hugs,
    Susan in Kentucky

  6. I keep trying to post but am having issues. Anyways, I just wanted to let you know you are an inspiration to me. Last Friday we received a diagnosis for our 5 month old son. Due to a mutation on a gene that is vital for brain development, my son is going to have severe global delays and most likely epilepsy. The love and compassion you have shown to your littles has shown me that by the grace of God, parents of special needs kids can carry on and keep going. Thank you.

  7. Our hearts are so heavy for you all. Praying for healing, hope, continued supernatural strength, rest. Love you.


Loving words from kind people make our hearts glad!