Wednesday, November 10, 2010

Wondering why....

Yeah, this is one of those posts...the one where I verbally spew...and I am really tired, so maybe I should just wait and process things before I post this, but I have a feeling I am going to post it anyways.

I have accepted the fact that I will always and forever be the mom to a child with "special needs".  We have had it easy up until recently.  Why do things have to change?  I don't like these changes.

I am easy going, the glass is always half full, I try to find the silver linings etc...I am just an all around positive person.


Today is not a positive day for me.  I feel like I am at the end of my proverbial rope.  And my issues are nothing compared to other peoples lives.  Mine are miniscule in the ocean of trials - but I feel like sometimes the pretending everything is ok is not alright.

Faith has been able to be mostly seizure free.  She does have epilepsy, but it has been controlled wonderfully for the last 2 years.  We decided to do a med change, to see if that would help her development and behavioural issues.  The new medicine is a welcome relief to us. 

Faith's brain "unfroze".  She is responsive.  She can follow 1 step directions well.  She is repeating words.  She is becoming an "aware" child.  Her brain has thawed!! 

We are ecstatic.  The seizures have remained under control, 1 every few weeks since the change.  Minor seizures.

Until now.

She has had 3 seizures in 5 days now.  I haven't been there for 2 of them, but they have not needed her ativan protocol.

Until today.

Just getting in from my night shift training and talking to my mom.  Faith falls asleep on my lap.  I realized that she was soaking me so I went to change her diaper.  She was in a seizure at that point.

So, I laid her on the couch, changed her sopping and dirty diaper and watched her, talked to her, touched her gently so she knew we were there. 

Then her arm started to move.  Just the one.  Then the rest of her body started moving.  This was her first full body seizure.  I was a mess and was glad my mom was there. 

At 4.5 minutes I gave the ativan.  The seizure didn't stop.  She was now drooling, so I turned her so she wouldn't choke.  I hesitated - call 911 or not.  It hasn't been 10 minutes yet, but this wasn't normal for her.

My mom dialled the number then Faith started to come out of the seizure.  She was turning blue and was having trouble breathing.  It was like she forgot what she had to do.  She started to get her colour back, so we told the operator that we were fine and Faith was recovering and we didn't need the ambulance at all.

Faith is sleeping now.  She probably will sleep all day now.  It had to be exhausting for her.

It was exhausting for me.  I feel like I can't handle this anymore.  I wonder why I signed up for this.  I am not losing it...don't worry.  These are just the thoughts I have going through my brain right now.

I also remind myself what a great support system I have.  I remind myself how much of a miracle she is.  I remind myself that it is only a seizure disorder.  It is manageable.  Life goes on.

I hate that my child has to go through this, and along with her the rest of our family and friends.  I hate how everything ripples.  I hate that my other kids all know how to handle seizures.

I need to sleep now...I am fine, just had to get this out.  I am not going crazy.  I don't need an intervention.  I am just having a reality day...I just wasn't prepared for it.



  1. I'm sorry hon. And I have days like that too... days when I wonder why my son has to have Autism. It is exhausting.

  2. How is she doing tonight? How are you doing tonight?