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My Daughter Has Epilepsy

My daughter has epilepsy. Before she was diagnosed doctors believed she suffered from febrile seizures. But as the episodes continued, they ruled that out.

She began anti-seizure meds a month ago. Sunday night she had a prolonged seizure and ended up on a ventilator for the second time in her life.

They administered a cocktail of three drugs via four IO access points which were drilled directly into her bones.

After she was stabilized, the transport team from Children’s got her ready to go to the PICU an hour away.

We got admitted. They were able to remove her vent, but the hardest part was still ahead. As she woke up from powerful mixture of drugs, she became inconsolable. She screamed and thrashed for hours at a time.

Finally, in exhaustion she and I would both collapse.

Twenty-four hours that cycle continued.

 

My mom said:

  • I don’t think anyone else would have the patience.
  • No one can settle her like you.
  • She just wants her mama.

 

I knew those things were true. I never questioned whether or not holding my baby as she thrashed in my arms was the right thing to do.  I never got angry with her. I never wanted to leave her. I only wanted to end her pain.

I loved her. I suffered with her. I needed to hold her not just for her, but for me. I needed to be there and do what only her mom could do.

Then it came. The kicker. The big AHA! The God speaks moment. He said:

If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts… Mt. 7:11

After 48 hours of non-stop suffering by her side, in my exhaustion, my weariness and my devotion to her, my Father empowered me with a truth that I desperately needed to hear. Everything I was doing for Laylie, he was doing for me, only better.

I have loved you with and everlasting love. Jeremiah 31:3

 

 

Apr 3, 2018Serena
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Comments: 3
  1. Sandi
    5 years ago

    I’m in tears! I’m so sorry for you both. So so sorry. I know you don’t believe me, but she does not have to be on those nasty drugs. They will cause untold damage to her little body. Cannabis Oil is healing thousands of children with all types of epilepsy with no negative side-effects. I know the oil has a bad rap, but think of it this way. It’s from God. He made it. And everything God made is “good.” His words, not mine. It’s man who has abused His creation and has turned it into something “bad,” but it’s really not bad because it heals. It’s healing so many children here in Colorado. I so WISH you’d just come out here so you could try it. You can stay with us. It won’t make her high. It will STOP these seizures in their tracks. That poor sweet baby won’t have to suffer like she is now. I love you. That’s why I’m sharing this. I don’t like to be pushy, I really don’t. I just love you all so very much. ~Love, Sandi
    https://www.epilepsy.com/connect/forums/living-epilepsy-adults/cbd-oil-seizures

    ReplyCancel
  2. Sandi
    5 years ago

    Please know, I’m praying BIG TIME for your precious baby! And I meant it when I said you can stay with us if you ever come out here. You might even be able to get it out there: https://www.marijuanabreak.com/cbd-oil-in-pennsylvania/

    ReplyCancel
  3. Sandi
    5 years ago

    Here’s what that same article says about epilepsy:

    CBD for Epilepsy
    Being one of the most prevalent medical conditions with statistics showing that around 5 people in every 100 will have an epileptic seizure at some time throughout their lives, and around four of these will eventually develop epilepsy themselves it is clear that so far there has been little to no progress with finding a cure!

    Whilst CBD oil has never been proven to cure epilepsy, studies using animals have shown that using CBD can dramatically affect seizures. In a separate clinical trial done by the National Center for Biotechnology Information, a specific dosage of Epidolex was found to reduce the number of seizures had by a massive 50% during just a 12-week period! While there were some mild side effects such as sleepiness, diarrhea and decreased appetite, the results massively outweighed the cons here!

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Serena
5 years ago 3 Comments God, Motherhood, Parentingepilepsy, God's love, suffering1,323
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