Open Your Eyes

Just open your eyes. Open your eyes and look at your mother. She's right beside you. Reassure her. Open your eyes so she knows you are still here.

*my eyes open*

Good. Now you can rest again, but only for a few seconds. Then you have to open your eyes again. Don't stop looking at her.

God I'm not ready. I have to be here. Please. I know my time hasn't come yet. Please. I have to stay for Evie. Don't make my parents bury me.

*my eyes close*

Open your eyes again.

I can't. I'm so tired. It takes too much effort.

Your mother is sitting here with you. She needs to see your eyes open. Open your eyes.

Ok.

*my eyes open*

I know she is afraid. She's calm, but I know inside she is afraid. I can see it. I'm afraid too. I start to cry. I don't want to hurt them. I can't leave. Why is this happening? Haven't I gone through enough? Haven't we gone through enough? I need to rest. There are so many people in this little room. I want to float away.

*my eyes close*

Open your eyes.

I can't. I just want to sleep.

Open your eyes. I am not asking, I am commanding you. Open your eyes.

*my eyes open*

The nurses are fussing over me. They can't get a vein for a third IV. The doctor wants to do a surgical procedure. They want to put a line into my neck. Oh dear lord, what is wrong with me?!?! I'm not supposed to be here. I'm supposed to be the healthy one. I'm the baby. The youngest. Hasn't my family lost enough? This is not how I want to be relieved of my burdens. Not yet. Please. Not yet.

*my eyes close*

Open your eyes. Look at your mother. She needs you to look at her.

I can't. Please. You don't understand. I'm so tired. I hurt. They keep poking me. It hurts so much. I feel weightless and free when my eyes are closed. Just let me be.

Open your eyes.

*my eyes open*

They are all still here. The nurses. The doctor. My mom. Either fussing over me or waiting to know what is wrong. I'm freezing cold, but burning up. I want a blanket, but they keep trying to take it away. I scribble my signature on some legal form giving consent to cut into my neck. Oh God, what is happening? I begin to cry again. The doctor rushed over telling me I need to calm down. How am I supposed to calm down when I don't know what is happening.

*my eyes close*

They tell me to turn my head to the left. I feel a plastic film cover my face and upper chest. Oh God, they're doing it. They're going to cut me. The needle presses into my tender skin to numb the area. Why does it hurt so much? I feel my tears sliding down my cheeks and a bit of panic settling in. Deep breath. Deep breath. Calm down. It's ok. You're in the ER and they won't let anything happen to you.

Open your eyes.

*my eyes open*

I search for my mothers face and she's right there beside me. She's so calm. That's what you want in an emergency situation. I know she'll have her moment later when the time is appropriate. When she doesn't have to be strong for me.

*my eyes close*

The doctor is leaning over me. I keep my eyes closed. I feel a bit of pressure on my neck. Then I feel warm liquid running down my neck. I know its my blood. The panic comes again. Deep breath. Calm down.

Open your eyes.

*my eyes open*

She's still there. I'm still here. We're going to get through this.

*my eyes close*

Whole Lotta Shakin'...Act One

Might as well rip the band-aid off...

Oww, oww, owwwwww!

Rae is epileptic. I'd like to say that I'm in some state of shock or in denial about her most recent diagnosis, but I'm not. Instead, I have jumped off the high dive, in full on free fall, holding my nose closed with my fingers, waiting to be smacked by the hard, cold water and hoping for the best.

Here's the backstory:

Rae had tremors when she was only a few months old. I mentioned it to our PCP and he felt it was normal given the situation in which they occurred (usually right when she woke up). We were all fairly confident that she was having some kind of startle reaction to whatever environment she found herself when upon opening her eyes. Oops!

I later mentioned this again to our Neurologist (at six months), but once again he felt that was perfectly normal give her age and it was not anything to be too concerned about at this time. Double Oops!!

Months pass....

My husband was still concerned about the tremors and I was in some sort of denial and still believed that maybe (knock on wood) they weren't anything serious and still just some kind of startle response. Now I'm mentally flogging myself because I was wrong. My gut was right, but my actions were totally wrong.

It wasn't until I started talking to an employee of our local Babies R Us, whose daughter is epileptic, that I began to seriously doubt what we were actually dealing with and began believing she was having (gulp!)...SEIZURES! After I described what Rae was doing, the woman advised me to record the tremors and take them to the doctor. It would be easier to show them what was happening because unless she had a seizure while in their office or during testing they wouldn't know what was actually going on. That's when I started climbing the ladder of the high dive.

I went home, charged my video camera, dumped all previously recorded videos into my computer, made an appointment with Dr. A for the following week and waited. In order to ensure that I captured the tremors on video, I made Rae nap in our living room. During that time, I discovered that she was having these episodes way more often than I believed. Almost EVERY nap time she would awaken suddenly, get a vacant look in her eyes, and shake...all over. I wept.

After a few more videos, some minor editing, and uploading the compilation to my Nook I was ready for our appointment with Dr. A...or at least I thought I was. When he viewed my video he was instantly concerned, stepped outside to place a call to our neuro, Dr. H, and wanted to have an EEG done asap...(big gulp!)...my mind was screaming, "That can't be good!" In a matter of minutes, we were scheduled for a sleep deprived EEG at 2 that afternoon. Now I just had to keep her awake till then, which is usually not a problem since she hasn't been napping till 3 or 4, but of course today had to be the day that she wanted a nap.

The video is a tad long and the final clip is to show that it wasn't noise or touch waking her.

I make arrangements for Mimi, my Mom, to ride to the children's hospital with me so she could keep Rae awake. That worked perfectly until we reached the parking garage. We waited for like five minutes for a woman to evacuate her space. I swear she was twiddling her thumbs. That's when Rae chose to nod off...she was out in an instant (crap, crap, crap). I threw my truck into park, hopped out of the drivers seat, flung the back door open, desperately unlocked her 5-point harness (while Mimi was rubbing her face with a cold wet towel), lifted her out of the car and started swinging her in the air. I'm sure the three car caravan behind me thought I had lost my mind. Once I passed Rae off to Mimi, I took my place back behind the wheel and proceeded to beep my horn at the oblivious women in the SUV. I was never happier to see reverse light trigger. FINALLY!!

Well, much to Rae's displeasure. we made it to the hospital and she was still awake. Now we had to get past registration and through the EEG... All I can think while walking the plank is, "I sure hope I don't belly flop."

*Shakin' Part 2 coming soon...