Monday, August 20, 2012

Shift Sleeping and Selfishness

Here I am, 10:35 pm awake and trying to find as much as I can to keep myself occupied and alert until it is my turn to sleep.  I am usually already in bed by now, and with barely sleeping at all last night, I am so ready!  I don't sleep well in hotels. 

Why am I waiting for my turn to sleep?  Well, as you all should be aware by now, Ephraim had to have a 24 hour EEG.  He is currently sleeping in bed, hooked up to all his electrodes and a little Spiderman back pack.  Eric and I debated the many ways we could go about bedtime, and decided that taking shifts to keep watch over E was best.  This would ensure that someone was awake and aware of any movement on E's part, so that the back pack can be moved accordingly, ensure he or the back pack doesn't fall off the bed (which would cause serious injury), and to ensure that he isn't just plain getting tangled in the thing.  Ephraim is the most crazy sleeper I have ever seen.  He is all over the place, often times not even on his bed, no covers, covers, no pillows, under pillows, over pillows, half on the bed, half off the bed, etc.

So, anyway, the day went really well!  We were so afraid that Ephraim wouldn't handle the wires, tape, gauze, etc, but he did great!  He cried and fought through the 40 minutes of hooking him up, but the tech said he did very well for his age.  It broke my heart though, but mostly because he really has no idea as to what was/is going on and can't tell us what exact part was a problem for him.  The rest of the day went well, with a few moments of him trying to take the chin strap off (and succeeding), pulling in the "tail", and trying to take the back pack off.  All in all, it was a good day, much better than we expected, and I am so proud of him. 

He is so cute, happy, and easy going most of the time.  I love him so much.  I wish I could hear him speak.  Not just sounds, but actual words.  I am hoping and praying that one day he will "find his voice" and be able to say anything he wants.  Oh, how I wish he could talk to us.  I cry when I think about how he may never talk.  He may never tell us verbally how he feels, what he needs or wants, to say "mommy" or "I love you".  It breaks my heart, over and over again.  I cry for him, for everyone who is affected in some way by this, whether directly or indirectly, and most of all, I cry for me.  I know that is selfish of me, but I can't help but be selfish right now.  This is my baby!  My precious little boy, whom I love and adore more than life. 

And... the internet here at the hotel is being stupid.  It says there is plenty of signal but won't connect.  So, this post will be posted tomorrow I suppose.  What am I going to do for 3 more hours though?!? :/

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