Friday, September 23, 2011

it's amazing, how quickly life comes in to focus
when you're faced with a tragedy, a trauma,
something unexpected.
our safe, little, self-centered world sheds it's heavy coat,
dropping it to the floor at our ankles,
the coat of our daily gripes
our materialism,
all the little things we take for granted,
to reveal the TRUTH.
that we need nothing in this world,
but love, family, good health,
a loving home to nurture all of that.
nothing else matters.
that next big vacation, next new car, new outfit. . .
oh sure, those things add excitement and offer new experiences,
feed us temporarily.
but they don't last.
nor sustain us through the rough patches.
it's our connections, our relationships with each other, our compassion,
that takes care of everything.
showing you that no matter what happens,
you will be held up.
my dear friend and i talked about that quote that everyone always uses when you're going through a rough time. . .
'God never gives you more than you can handle.'
yeah, yeah, yeah.  that's comforting sometimes.
but we giggled at that.
really?  we agreed.  are we really that big of assholes that God keeps dishing shit on to our plates?
are we SO strong of human beings that he says, 'yeah, here you go.  you could use some more.'
who knows.  we'll never know.
but you go to those places when you're suffering.
when you find yourself in a hospital room on a random monday,
watching your baby sleep, hooked up to electrodes and monitors,
waiting for the other shoe to drop.
those surreal moments,
where you can't help but ask, 'why?!  why us?  why now!  why my baby?!  why doesn't THIS family have to go through this, or THAT family?!  can't we get a five-year-extension or something, on how much crap, how much pain and fear we have to endure as a family?
and thinking about those families you know, that don't ever seem to have to go through anything hard.   
if we were weak, would we be spared?
but you reel those thoughts in, because that's a terrible think to think or say.
even in those horribly terrifying moments,
when you don't yet have any grasp of reality but are stuck in a time warp
from what you were doing just yesterday, to where you are now,
you know, you wouldn't wish whatever you are going through, on anyone else.
and trust, that maybe someday,
the WHY this is happening to you, will reveal itself.
and that it doesn't matter what others do or don't have to go through.
and ALSO, that's it's not about you.
it's about learning to cope, to find the silver lining in the worst,
and gain SOMETHING, no matter how small, from the experience.
so you'll manage it, somehow.
life is cosmic. 
the universe, or God, whichever you believe, has a way of showing you things.
i REALLY believe that now.
as scary as this experience is with jack,
how unbelievably lucky and blessed we are,
to have it practically brought to us on a silver platter.
just like brian finding his cancer.
oh, it sucked.  but it was made simple.
ONE LITTLE STORY prompted an action.
one voice in my head lead me to a moment with jack that yes,
would change our little world again,
but made things easier.  move quickly.  and catch something that otherwise could've continued to go unnoticed.
and i can't help but think.
we were at a gopher game just over a week ago.
watching college ball in an autumn sun.
a beautiful day, but one that ended with coach kill collapsing from a seizure.
i remember thinking, 'man, that sucks.  poor guy.'
and of course, jack wanted to know what a 'seizure' was
and spent the following days checking in with me. . .
'how's coach kill?  is he better?  did his seizure's stop?'
were we supposed to be at that game?
to have that word subtly introduced to our daily vocabulary?
almost a week later, experiencing it for ourselves?
who knows.  so random.  maybe that's far-fetched.
it's much easier to say, 'oh.  that's just a coincidence.'
but i like to think that sometimes, there's a plan.
someone looking out.  preparing you.
now i will say, t's exhausting to live a life where everything you hear and see becomes a part of you.
i've lived that.
fear, anxiety and obsession over other peoples' stories have been a part of me for many years.
(i'll save that topic for another day.)
but as i watched sweet mohammed, a male nurse at children's,
and replica of punjab from orphan annie,
a large, looming figure, but a man that was gentle, kind and and quiet as i watched him glue and delicately screw electrode after electrodoe to jack's head,
his warm eyes and soft voice bringing peace to the room and to a desperate mommy.
well, i couldn't help but wonder,
were we on a clear cut path, one that brought us here?  did it start at the gopher game?  is it that simple?
again, who knows.  maybe just an odd coincidence after all.
and yet there we were, jack, although tethered to a machine,
made himself at home.
finding just enough slack to leave his room while i laid in his bed in a heap of anguish.
him schooling a cute nurses aide in wii bowling,
while we fell apart, trying to make decisions about the future of his little brain.
God damnit.  (actually, i say the F-word, of course.)
that's all you can say in those dark moments.
you can't run.
you have to face, the best you can.
and then dive in, become an expert.
cram eight years of med school in to 2 days,
in order to care for this child who now has some BIGGER needs.
but as my amazing husband, the man who TRULY is my hero says,
'it could be so.much.worse.  we just have to change some things.'
and he's right.
enough wallowing in what WAS.  time to be in what IS.
we have so much to be thankful for.
we have a happy boy we can bring to school, snuggle with at night
(which we get to do more of since we're watching him so closely, something i haven't been able to do since he was a baby.)
he's alive and energetic and just has this 'thing' now.
so many parents have to say goodbye too soon,
live their life without.
and some never get to experience what its like to love someone that much.
THAT is a tragedy.
so we'll take this and make it work.
and continue to do our best to just be and not let the fear of the unknown get the best of us.
jack had a great day at school today.  bounding out at the sound of the bell,
his little sister in tow.  jolly as can be.
a funny side story. . .his first day back, thursday, he wanted to bring the picture of his brain from the MRI.
he left it in the car though, so grace grabbed it chasing after him all the way in to school,
shouting down the quiet hallways, (with her east coast accent, of course,)
hysterical.  a much needed laugh on the first morning leaving my boy to the hands of his teachers.
WHICH, by the way, has been another blessing. 
we switched schools this year to something that fit us better and it's been unreal.
they've totally wrapped us up in their goodness and that's one thing i can say,
i feel good about in all of this.
the six hours of day i have to send him off, i know he is well taken care of.
as hard as it is, i welcome that break from cowering over him, watching his every move
(which i know i won't do forever.)
a release from the anxiety of the morning, when he usually has his seizures,
while trying to pull it together and get people out the door.
it's such a relief to TRULY let him go and be a kid still,
let God take care of him and know that whole dang school is aware of his stuff and that they're all watching out for him.
allowing me to be a focused parent to the almost-3-year-old at home with me still,
the house that needs management,
the errands that need running.
truly a blessing to have some normalcy to the day so we can settle in to our new nights with a little more ease.
one day at a time, we'll find our way.


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