What is "normal"?

Yesterday--

I held him in the back of the car while Clay drove us to the ER

His little body twitching and jerking.
there was vomiting.

By the time we reached the ER we were hopeful that the worst was over.
We were wrong.

It is maddening to go into the ER and try to get someones attention through the Plexiglas....
Clay is holding jack who is rigid. Vomiting. And it appears as if everyone is moving in slow motion.

I won't lie to you --This was as bad as Clay has ever seen--and that is saying ALOT
I felt utterly useless except to answer questions, sign papers
AND I felt completely compelled to make sure that I had a hand on him the whole time.
Amidst all the tubes and wires and medical paraphernalia-- I foolishly thought that if I had MY flesh touch HIS flesh it would somehow help......

after we were released we came home and watched him sleep
(the meds gratefully conk him out)

and then we go about the business of getting back to normal
(have a drink, get some food, wander about the house to do "things")
what is NORMAL?
When at any moment you can be holding a small child in your arms who is twitching and jerking- racing to the ER........
is "normal" the opposite?
of course, we are hyper vigilant right now....
so that flavors our "normal"

any thoughts?

No rest for the weary..........

I MEANT to do a blog about being Thankful and grateful at Thanksgiving.
THEN at Christmas --one about what true giving means
and YET AGAIN --at New Years--one of reflection.

See where I am going with this?
Haven't had any time for such luxuries as blogging.......there are children to take care of (including a trip to Oaklands Children's Hospital for two days of testing)a house to keep up (in since june--and no, we aren't all unpacked), errands to run, a job to go to .....
and most importantly--a family to be a part of.

I used to be online alot.
ALOT.

but that was when I lived in a real crappy house with a man who I didn't want to be married to let alone spend "quality time" with....
and so I self medicated with oodles of blogging and online chit chat .....

so here is to 2011.
whatever it may hold.
hopefully I can keep up on this blasted--uhhhhhhhhhhhhh BLESSED? --blog.

The Sounds of Saturday Morning and other musings

the dishwasher chugging away
snippets of "Drake and iCarly Declassified" or whatever it is Darrah watches on Nick...
the boy laughing, babbling, saying "I see a cars"

RIGHT NOW?
It all seems good. As I write this I look out the dining room window --to the back yard.
Beyond the back yard is the bay then the ocean Clay reminds Darrah all the time just how lucky we are to have this view --as we live in one of the most beautiful places ever.

Yep......we are lucky lucky people all right......

Did I mention Jack had another seizure last night?
Not big. But he did vomit and it did come fast and hard.

I remember when Clay and I got married on 9-29 I specifically emphasized the words I had to repeat to him--in good times and misfortune-- knowing he-WE- had this cross to bear.

And while we ALL endure this--I work hard to keep Darrah's life from being engulfed in sorrow and making sure she is not just another foot soldier in the fight to keep Jackson happy and alive day to day........

But for TODAY? today is good. today is OK.
We have family

Crisis and YOU, a users guide......

My becoming a step mom (who am I kidding? - MOM) to Jackson just went to that next level.
I experienced first hand the "big one"--the once a year (knock wood) or so seizure
Puking, glassy eyed stare, drooling, loss of bowels, shaking, lips blue, rush to the ER, tubes and vitals, needles and meds and worry


And that ain't all.

His little body--all 65 pounds of him with so much medical apparatus attached to him and still it was hard to bring him back
The Jackson that I have come to know and love was gone.....
All that was there was the seizure taking over this little boy
Clay --who has been through all of this before--was a champ--
A knight fighting for for his son--to get them to move quicker--more efficiently--he has been through this before--
I tried to stay out of the way-
keep his neck straight, rub his hair.....keep watch on the vitals....

the seizure was almost 3 hours
It left us all exhausted--none so much as the boy
And what a brave boy
Monday--he was grumpy as the aftermath of the meds and the seizure still wrecked havoc on his little body
Tuesday afternoon brought a return to mostly normal with a few small seizures in the evening--almost like aftershocks of an earthquake

Darrah was a champ-- a big sister like no other.

SO
any questions?

The blink of an eye............

so you are just sitting there.
it's been a long day- a good day, but long
your daughter is tucked in bed,
your husband to be is sitting in a big comfy chair, his boy tucked in with him, cuddling-settling in for the "pre-bed wind down"
you think- Life is good.

then
then you see what your internet research has told you is an ictal smile
A crooked little grin that indicates:
SEIZURE

you watch.
you see the smile, the head nod, the wide eyed stare and dilated pupils.
you wait.
seconds turn into minutes

then
its all over

you are emotionally rung out, knotted and worried.

the boy?
no worse the wear.....or so it seems.

and so life goes on.

Song of Myself

It is time to explain myself -- let us stand up.
What is known I strip away,
I launch all men and women forward with me into the Unknown.

What I know thus far:

• at 46 I think I FINALLY "get it"
• I understand what it means to love and be loved and accept both graciously
• The bigger picture will always trump the smaller immediate need.
• Some milestones are so small that if you blink--you'll miss them: keep your eyes open
• Family is where you find it.

all this being said : I will endeavor to blog--
on sewing, on tattoos, on being a mom to a righteous 9 year old girl, to being a step mom to a severely autistic 8 year old boy with TS, on finding true love through a bumper sticker, on being a geek...............

stick around and read on as I launch us into the unknown