June 16, 2012

Trying to come up for air

I was up late Thursday night...and Emily was up late Thursday night.  This is not something we can do.

I was busy with discussions about the upcoming and final trip for the twins, our business and how we *have* to get it in full gear, and chatting with my daughter about her upcoming wedding....Emily was relaxed and chatting and playing games on FB.  She hadn't had another seizure all week and we were beginning to let our guard down. 

I finally realized around midnight that she was still up and needed to go to bed.  I reminded her that she wasn't supposed to get over tired and I felt a prompting that I should have stayed downstairs with her.  I disregarded that feeling and kept telling myself that she would be fine as she had been all week.

At 3am, we heard another panicked call from Mary that Emily was seizing again.  We rushed downstairs and I found my sweet baby making an eerie moaning sound and thrashing with no control.  It took her a long time to come back to us mentally.  She looked at me with a blank stare as though I were a complete stranger.  She couldn't remember her name.  She just looked lost.  I stroked her head and asked her if she was okay.  No response.  I continued.  After a time, I asked her if she knew who I was...and, after a pause, in a very slurred voice she said...."mom".  

After another trip to the ER and a visit with the neurologist, she has tentatively (pending further tests) been diagnosed with Juvenile Myoclonic Epilepsy.  We got our prescription, Emily got further blood work, and I took her out to her favorite restaurant for lunch.  We came home, hot and exhausted and Emily immediately laid down on the couch.  

She was just dozing when she had a more conscious type seizure.  This one should have been less scary since she didn't lose consciousness but every part of her lurched and jerked.  She could talk to me but had a peculiar and contradictory happy smile on her face.  I again stroked her hair as she jerked uncontrolled and I was helpless to do anything to get it to stop.

I am truly struggling...I keep hearing comments from those that are relieved about the diagnosis.  And I know I should be too.  And, in fact, I am somewhat relieved to have some answers....and hope for treatment.  After all it is certainly better than a brain tumor...and it is a much more treatable form of epilepsy than some.  

So, why on earth am I upset and dare I say...grieving?   

 I went to bed last night feeling more mentally exhausted than I may have ever been.  And, I hoped that a good night's sleep would cure it and I would wake up ready to charge the day as I normally do.  

Only, I woke up every bit as mentally taxed as I was when I went to bed.  

Maybe there will be a day when I will be more philosophical about it all, more understanding, more appreciative of the normalcy that I will regain.  

For now, I grieve the loss of a "normal" carefree life for my daughter.  I am saddened by the fact that she will likely have to take medicines for most of the rest of her life.  I am frustrated by the side effects that often come with the meds that can make life nearly as miserable as living with the seizures.  I am scared of the addiction that often comes with these drugs, especially the one that her neurologist prescribed to her.  

I am understanding but upset about the fact that when she is older and if she has even one seizure...she will have to wait a year to be able to drive again.  And, that there are many professions that she will no longer have the option of doing.  It makes perfectly good sense but could make the difficulties of being a young adult much more complicated.  

And, what about family and having children?  Many of the meds are incompatible with pregnancy and seizures can be more frequent during that time...and can be harmful to an unborn child.

So, I am worried and I'm grieving and for any of you that have witnessed a loved one having a seizure you will understand when I say that it was truly scary and traumatizing for all of us.

There is a lot going on in our family right now and I'm finding myself resolving to pray and read the scriptures more and lean more into the strength and hope that only comes through God.  For now, I will put one foot in front of the other....


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