Sunday, June 17, 2012


Tonight, after Jeremy gave AJ a bath and he was snuggled in his bed, I went in his room to kiss him goodnight.

It was then that I recognized that stare.  The seizure stare.  I waited, and saw the drool.  I dropped to the floor and watched my little boy stare into space and held his hand.  This one was about a minute.  A minute that felt like an eternity.  I sat and cried silent tears while I watched my little boy seize.  I watched him intensely waiting for my little boy to come back.  And he did.  With a big smile and a hug.  Thank God.

Tonight is one of those nights that I feel so helpless.  We do everything we can for AJ, but this is one area we simply cannot do anything for.

No mother should ever have to watch their child suffer-in any way shape or form.  Watching my child seize is torture to me.  Pure torture.  I try my best to be strong for him and comfort him.  Even if he's still, I want him to know I'm there.  His seizure activity has been off and on recently.  I really hope it goes off for a while.  

I still don't understand why AJ's epilepsy is the hardest thing for me to handle.  Of all the things he has going on, I can't get over the epilepsy.  I worry about more brain damage.  Sometimes, I even get scared that some day the seizures will be uncontrollable and will take him from us.  Tomorrow, I will call his neurologist's office.  To which the nurse will talk to me for a ridiculously long amount of time and talk me through everything epilepsy.  It will probably lead to another visit, a blood draw, and maybe another EEG.  All of which I hate.  Perhaps it won't.  She'll remind me that breakthrough seizures do happen.  They are controlled most of the time, but sometimes one slips through.  Was he drowsy?  Yes.  Then you know the most common time for seizures is drowsiness and during sleep.  Yes, yes I know. Is he growing?  Yes, like a weed.  Well, then?....  I know, I know.  

I'll be checking on him a lot tonight and am already anxious for his amazing morning smile.


  1. I'm not a parent so I can't completely understand what you go through with AJ's epilepsy, but I have epilepsy myself, so I know a little. The fact that you are there for him when he wakes up probably means the world to him. OF course, everyone's seizure activity is different so I don't know if he even knows the he is seizing, but that familiar face was always a comfort for me. And I'm sure my mom went through so much agony when my seizures started...
    Keep on keeping on. AJ seems like a strong little fellow.

  2. Take one day at a time. You are doing everything you can.

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  4. I am so behind in my blog following and I feel so bad I didn't see this post before. I wish I could give you a hug. Watching a child seize is frightening. My son had seizures at 28 days old. Luckily the seizures stopped but little did we know that 5 years later he would be diagnosed with Autism. You are an amazing mom to AJ and you are doing the best job possible. I hope the seizures have settled down a bit. God Bless.


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