Thursday, September 22, 2011

i wince, skimming over my last post as i sign in to write a new one.
was that really just a week ago?
seems a lifetime.
as our reality has, once again, been transformed.
the rug being pulled out from under us as we try to wrap our heads around this
NEW world we're living in.
if you're just checking in, i'll bring you up to speed on jack.
will do my best to marry facts with my own personal feelings.
try to make sense and as usual,
simply just give release to all the thoughts, emotions and fears that are bombarding my tired brain.
in hopes to find some release here, some encouragement and support.
as always for me, using my writing as not just a creative outlet
but a way to make sense of what we are NOW experiencing.
i woke up monday morning saying to myself,
'you know?  i'm going to get jack up early today for school.  we're always rushing.  he's so putsy in the mornings.  i love to let the kid sleep, but then i just end up angry and frustrated when he's not ready to go.  so i'll go in to his room at 7:45am to get him up instead of his usual 8am.'
those were literally my waking thoughts monday.
a day i had high hopes for, as i do most mondays, with no one at home (at least for the morning,)
two hours to myself to get caught up from the weekend.
not this monday.
i went in to jack's room at exactly 7:45am to a bed that was shaking, a weird rythmic thumping.
i stood for a second wondering what was going on and then heard the gasping for air.
i ran to his bed to find him seizing, his little arms and legs contorted, his heart beating out of his chest.
his muscular little frame convulsing.
a seizure.
i'd never seen one, but knew what it was.  called 911 as i tried to hold him.
so awful.
i have no idea how long it had been going on for, but he came out of it within a minute.
he looked at me and said, crying, "mom!  i'm fine!  this always happens!"
(he saw me on the phone in panic.)
i just stared at him.  'what?!  what do you mean?!  this always happens?'
he said his arm just fell alseep. . .it always happens.  i don't know still, if he was referring to the seizure or the fact that his arm was asleep, and continued to ask him.
i don't think he knew he was seizing while it was happening, but was and has been coherent afterwards.
able to sit up, talk, focus on me.
needless to say, paramedics in my house at 8am on a monday was horrifying.
he was ok.  he got up, showered, ate breakfast, as if nothing had happened.
i was left in shambles.
what's happening?  what was that?
of course, we went in to his GP to find out what happened.
she said it sounded like a seizure, but couldn't be certain.
but should definitely get in to see a neurologist.
i kept him home monday and spent the day making calls, looking online,
in total disbelief and enveloped in fear from what the morning produced.
my, up until now, perfectly healthy, sweet 7-year-old boy clearly has something wrong with him.
a neurology visit, of COURSE, was a 4-week wait.
thanks to the advice and encouragement of a dear, dear friend who has dealt with seizures with her baby boy,
pushed me ahead.  that there's no waiting on this.  go straight to the ER at children's hospital and i did just that.
monday night.
thankfully, they admitted us, per my urgent requests,
hooked him up to an EEG to monitor his brain activity while he slept monday night.
he had two more seizures in the hospital, both in early morning, lasting about a minute each.
a terrifying experience, but thankful it was caught and in a safe place.
this has begun our new reality.
although his EEG revealed serious abnormalities in his brain waves while he slept,
his MRI was clear.  no tumors, nothing suspicious, and as of now, no damage done from the seizures he's had.
(and we're pretty sure he's been having these at night in the past few months, but were unaware until monday.)
he's had a few nights where he's gotten up to use the bathroom and collapsed because his legs won't work.
his arms and legs are often asleep in the mornings.
at this point, we're not sure if he's been pulled awake by a seizure, has tried to get up and couldn't because his legs muscles weren't working?
at the time, we assumed it was just sleep paralysis from deep dreaming, which is common.
and that still may be the case.
either way, he's having seizures and they occur in sleep, typically while he's moving from a sleep to awake state.
and he has it, then pops awake.
'hey!  wow!  that was a big one!'  sometimes he's conscious of them.  other times he's just come awake and said, 'Hey mom!'
i'm still wrapping my head around how we got here.

i'm allowing myself to be frustrated and mildly annoyed, but not angry.
we are SO DAMN BLESSED that i found him having one.
that we acted instead of waited.
that he had more so they were able to capture his night time activity in order to diagnose.
clearly someone is watching out for us.
i believe in that.
i will find myself going to the 'why's.'  why jack?  why my sweet, energetic, optimistic boy?!
he's been so healthy!
but it doesn't matter.
it's here.  it's what we have to work with now.  he's still jack, just another side of him now that will have to be monitored and managed.
it sucks and it's horrifying.
my mind, my TIRED mind right now, of course goes down all those dark alleys.
will this change him?
will he become a different person?
what does his future hold?
what if he has kids someday?  what about them?
or will epilepsy claim him?
but i have to stop at some point.
we have no idea.
my same dear, dear friend, who's been in these shoes, reminded me that,
hey.  this is no different than it was parenting before.
it's still the same worries, fears, of raising a child and having to face tragedy.  the unexpected.
only for us, at this point, it's more definitive.
there's a 'thing.'  a something that brings his life, our life,
in to greater focus, reminding us that NONE of us knows when we'll leave this earth,
how long we'll be here,
how long we'll have our children for.
what we'll be faced with.
we could all be one day away from our worst nightmare.
a morbid thought,
but all the more reason to STAY.IN.THE.MOMENT.
especially with our children.
to learn to accept where you are, no matter what your reality is,
cry, grieve, moan, stomp if you have to,
but then move forward the best you can and trust that peace is always waiting on the other side.
it helps that jack seems unaffected during the day.
his same old, beautiful self.
he slept great the first night home (in our bed, of course, so we can watch him.)
woke up, came down for breakfast.
'mom?  you should wear that shirt more often!  you look beautiful.'
his heart is huge.  and i'm terrified what this may do to him, rob him of,
aside from sleepovers with friends, more freedom, things that we'll just have to do differently for safety's sake.
we'll be keeping him close for awhile.
(and remember, these are my feelings.  i know brian feels a lot of the same,
but handles tragedy and trauma so much differently. . .and better.  he is my hero.:)
but for me, i feel like we have a new baby in the house again.
only he's 7.  a monitor on in the morning so i can hear him breathe while i get the other two ready,
before he wakes up.
pacing, rocking, keeping busy but always aware of him, watching him.
i know eventually we'll get to a place of ease again.
of place of more confidence and trust.
not there quite yet,
but soaking up the hugs, the emails, the calls, the texts
with assuring words, stories and support.
reminding me also, that's there's nothing we won't be able to get through
surrounded with the love from our friends and family.
in the meantime, this is where i'll write instead of send mass emails.
so feel free to check in on how's he's doing, how we're doing.
and if you have any information on this SPECIFIC type of epilepsy,
please share.  there are SO many types.
anything relevant to this would be much appreciated.
i love information, education anything to keep us informed and giving us a little more control over this.
again, jack is doing great.
he cried when we left the hospital because he had so much fun.:)
he had all the nurses wrapped around his finger, allowed one to give him a bubble bath even!
i just looked at him and shook my head. . .''geez buddy!  you're not afraid, are you!'
such a ladies' man.
he had two little tremors, one last night and as he woke this morning, but nothing compared to the others he's had.
he's back at school today.  on an anti-seizure med to regulate his nights and keep him from having any episodes during the day.
will continue to put updates here when i find the time and energy.:)
love you all and can't thank you enough for the prayers and support.
please keep it coming.:)
(oh.  one more thing.  if you know of anyone PERSONALLY who has experienced this with their child, who i can talk to or meet with, would be wonderful.)


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