Saturday, January 26, 2019

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.



  1. Oh, Julia. I woke up around 3:00 am EST this morning with Mary on my mind and the urge to pray first for her, then your boys and then for you. And as I stirred from sleep the rest of the night, you were at the front of my mind and the instruction was to pray for you specifically. He sees you. He has not forgotten you. He will give you rest. I know you know that.

    1. I can't tell you how timely your prayers were this morning! Thank you for listening!

  2. I am so very very sorry!!!

    I can not imagine what you are going through.

    Big big hugs and prayers.

  3. I too will beg the Lord for Mary and all of you. With love, Barbara

  4. Lord please carry this darling child higher allowing her to be totally cured from seizures and to be a happy carefree child. Lord please hear our prayers

  5. Lord please carry this darling child higher allowing her to be totally cured from seizures and to be a happy carefree child. Lord please hear our prayers

  6. I am so sorry you are all having to deal with the seizures getting so bad. Especially Mary. I pray that 6 months goes quickly and it helps her xx

  7. Sending Mary and you huge warm HUGS from Massachusetts (Go Patriot’s). I will keep you and your family in my nightly prayers💚

  8. Praying for Mary and for all of you - for strength, for mercy, for healing.

  9. I have been praying for Mary and will continue to do so, and your family.

    God bless you all


  10. Have you thought about a service dog?

  11. Heavenly father I come to you, my family comes to you asking you to heal Mary. Set her and the family free from these seizures. Bring them comfort and peace.Bless Mary lord, protect her from this sickness. In Jesus name we pray Amen. Love Linda and family.

  12. I am speechless. I keep you in my prayers.
    Being a happy little girl, whenever it's possible, is so much 'Mary' :)

  13. Dear Julia and family,

    is it 100% sure that Mary's heart condition is due to the epilepsy - and not the other way round?

    A friend of ours has epilepsy and it was thought for years that this is due to a car accident with head injuries - until it was found out - after a heart-stopping episode very similar to what you do describe - that he has a heart syndrome called long QT syndrome.

    Long QT causes the heart to stop at unforeseen moments and this may trigger epileptic crises because the brain does not receive oxygen during the heart stops.

    The doctors told my friend that in such literally heart stopping moments "the heart will eventually start to beat again" - but I witnessed such an episode, complete with all what you decribe and I found it VERY scary.

    I am sure you checked all earthly possible regarding Mary's condition one hundred times already, but I thought I would just send you my two cents, just in case.

    Prayers for your and thank you so much for the updates!!

    1. Dear Anonymous, Your post horrifies me. I know about LQT. I have it, so did my younger sister. Please, please tell me I mis-read what you wrote about your friend. He needs to be on meds and/or have a defibrillator placed. If the heart is out of rhythm for too long, it will not straighten out on it's own. Your friend needs to see an electrophysiologist (EP). ASAP.

    2. Yes - Mary has epilepsy. She has a very rare kind. Her epilepsy is considered intractable. She has had several MRI's to confirm her diagnosis. She also has an extremely rare gene deletion that is also associated with her condition.

      Mary stops breathing during her tonic/clonic seizures. This is a normal part of those seizures. It caught us off guard the first few times it happened and it will never ever be comfortable but it is part of what she does. She doesn't have Long QT. Thanks for your two cents!! I'm glad you care.

  14. I am sending love and prayers to Mary, Julia and the entire family from here in St. Louis. What the woman above posted could be something else to look into. Please give yourselves hugs for me...and an especially big one for your precious Mary! Kelly Ann

  15. I can't imagine how difficult this must be; I pray this pump works much faster than believed.

  16. My heart breaks for you all. Sending a prayer for you!

  17. Prayers and love from yous MD cousins, Mary. Lifting you up to the Father, Rob and Julia, and thanking God for your lives.

  18. I wanted to respond much sooner but was offline due to a defunct computer, and the library computers wouldn't allow me to comment. You are all in my prayers, especially Mary. I am so sorry she is having to endure this, and can't begin to imagine the pain of witnessing her seizures and feeling helpless to assist her. But - Mary is exactly where she is supposed to be, sheltered within the love of your - her - family. I hope that the pump will soon provide relief for her - and for you all.

    love from Susan in Kentucky

  19. There are not words, only prayers 💙

  20. I added Mary to my church's prayer list and I've prayed two novenas for her. I can't even imagine how hard it is to see her go through this. You are so brave!


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