Hyper Vigilant... and a rainy day

Today is May 8, 2013.  Its Wednesday.  It's raining out today.  The leaves are all popped out and things are green and colorful outside.  A very welcome change from the crap weather we had, and all the bad things that have haunted us this past winter as well.

Daniel was revisited by the demon called seizures last weekend.  A Sunday night, around ten. Shaking and white in his bed.  Had to do the rectal diastat thing to stop it.  Thankfully didn't have to call 911, but it was close.  Now I am back to that state of hyper vigilance wondering and watching what will happen next.  An EEG is scheduled to see what has changed.

New for me....  I now seem to have a problem with high blood pressure.  I have been monitoring it for two weeks, and today it is 170/110.  I don't know.  Weight, yes thats a problem.  Lack of exercise, yes that's a problem. Lack of sleep, definitely a problem.  Stress, every day.. no reprieve.  Sugar is even slightly on the high side.  True, I have never been this heavy in my life.  Yet, I am 46, and I am completely exhausted.

But as I sit here listening to the rain... Daniel's school just called twice.  Medical and educational issues to resolve.

There are so many things I wish I could be doing to enhance Daniel's life, make Sarah happier, and give Thomas more than what he has.  But I am struggling to keep depression in check, you know.  And although I generally feel happy, its hard to be happy and "hyper vigilant" all of the time.

This morning I looked in the mirror and asked myself when was the last time I prayed?  Couldn't quite remember.  Need to do that, for sure.

I am worrying about Daniel right now as I write this.  Always wanting to be with him.  Because two days ago I found out that one of the sweet children in our CMV group passed away.  A beautiful boy named Jorden whose family live in Seattle.  Aspirated on his own vomit.   This family has been through hell and back with Jorden and they maintain every ounce of faith that a family should.  I am so amazed by their strength.  But just as well, I am also deeply saddened by Jorden's loss.  He was a fighter.  Had been through so much and always came out with an award winning smile.

We always wonder don't we?  Will the day come when I will sleep through the monitor and wake up to find Daniel still and blue in his bed.  I know how morbid that sounds.  But that's what Mother's of Medically fragile children have to live with.

So when the seizures came back.  I sunk 10 feet into the muck.  It will never stop to be a concern because he will always a deformed brain.

Today as I listen to the rain fall.  I have to get ready to go out.  And run typical errands.  But I feel like crying and I'm dizzy.  I should go over to the doctor, but I'll call them just the same.

There is no way for me to put into words how life goes in a life like this.  Medical issues, fear, lack of sleep, incredible happy times, incredible laughter, tears, anxiety over money and not having enough, wanting to do as much as I can for my entire family.

And they say I should do things for me.  They say "take care of Julie" .  So I try for a day or two, but the damn stress comes right on back when the pressure sets in.  "Need to get to CVS", "Need to have enough money",  "cars are old and dying", " Thomas needs new sneakers"."Sarah needs a Prom dress" ....

Oh it is not enough enough that I just have to keep the boy smiling and happy.  Is it.  Sheesh.
Being a mother, the kind of mother that I am.  Is feeling just like this rainy day right now.  Gotta kick myself in the ass and keep being vigilant.   I have no choice.   I LOVE THEM MORE THAN ANYTHING IN THIS WORLD.

Nuf said.