Tuesday, June 18, 2013

The Darkness That Lurks {Epilepsy Awareness}

How do you do it?

How do you tell your baby, one of the prettiest, sweetest girls you know, the child whose older sister proclaimed as our angel the day she was born, that she won't die?  How do you even deal when those words come from the mouth of your beautiful 5 year old daughter?

My Momma heart breaks for her.  My Momma heart wants to scoop her up and hold her tight and keep her safe forever.

I want to SCREAM.  I want to SCREAM to God, "WHY?!  Why my daughter?  Why my precious baby?  Why does she have to suffer with this?  Why does anyone suffer?"

I can't reassure her that she will wake up from the next seizure.  I can't reassure her that there won't be another one.  I can only tell her about Heaven and all the great things that await her there.  Even when I don't want to because I pray deeply and hard that she will not know for a long, long time.

"Momma, who turned out the lights?", she asked me. "Was it you?" "No, baby."  "Was it Daddy?  Why would Daddy cut the lights out on me?" "Daddy didn't, angel."  "Oh, Grandma did it then!"

All this past week she has been terrified of the dark.  It didn't take me long to figure out what she meant.  Her whole little safe world went dark last Tuesday morning.   She couldn't see for almost an hour.  Her eyes dilated so much that she wasn't able to see anything but a black abyss.

And it hits me: just how terrified she was.  That this seizure affected her sight so badly.  That the next one could honestly leave her blinded for good.  That I'm thankful this seizure didn't leave her blinded for life.

It hits me that she could have died last Tuesday.  That she stopped breathing on me.  That there was nothing I could do and no amount of CPR could stop her brain from overloading and her body from seizing.  It had completely taken control.

All I could do was watch and pray.  All I can do now is wait and pray.  I do daily and she has prayed too, wholeheartedly.  We all have.

Tomorrow morning, or rather in a few short hours this morning, at 7:30 am, it will be one week from her worst Grand Mal since she was 4 1/2 months old.  One week has passed.  Multiple conversations to make her forget and feel more at ease have happened.

Every day we have the same talk.  "Momma, it was dark." "I"m so sorry, Laycie."  "But you didn't turn out the lights on me?" "No, baby." "You will keep on a lamp for me." "Always, if it makes you feel better."

And I do.  She sleeps in the bed with us for now, until we know this monster called Epilepsy is controlled again.  I leave the light on for her and for me.  It helps me see if she's breathing.  It helps me see if she's a little too still.  And it puts her little mind to ease.

I don't know what the future holds.  I don't know how to calm her fears other than talk with her, listen to her, be with her, every waking and sleeping minute.  And pray, for her and with her every time she needs to do that and even when she isn't even aware I am.

I'm thankful that God has blessed us with more time.  I'm well aware of the Mothers that weren't given that chance.  My heart aches for them and for all the Momma's who must watch their babies suffer so much.

For now she sleeps, though it's still very much restless and we wait patiently to see if this monster is lurking or controlled for now.  Only time will tell.


  1. Dear Dana. How very heartbreaking. My cousin has been dealing with this in her now teenage son. Even the "latest" brain surgery technique didn't seem to help. I pray for all of you.

  2. 'Tis a difficult thing you are walking through with your daughter.
    I can't even imagine how difficult it really is.

    My prayers are with you this day.

    Annette @ A Net In Time

  3. My younger son had a seizure once (well, another mini one the next day) from a fever when he was little. It is such a helpless feeling.

    I am so sorry your family has to walk this road. I cannot imagine the terror she feels, and the pain of watching and waiting the rest of you go through. Praying for your family right now. Praying God turns on the light for her.

  4. That must be so difficult and heartbreaking. I'm praying for her and your family.

  5. Oh my goodness. May the Lord give you an overwhelming peace as well as wisdom in knowing how to deal with this day to day.


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