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Seizure Solidarity When There Is A Black Hole




This past Wednesday, we took Leo to Boston Children's Hospital to get a second opinion from their docs at the Epilepsy Center. As you know, this fall season has gotten off to a pretty rocky start in Camp Lion Man. We've had it all: an increase in seizures, allergy reactions to meds, strange side-effects, and general re-haul of all of our assumed norms and expectations.
When it rains it pours...
And thunderstorms...
With scary lightening.
But when I was a kid I would always run towards the storm to watch it out the window or the safety of the doorway and glorify in its power.
When we had the blood moon eclipse a couple of weeks ago, I couldn't help but feel a flash of fear as the dear old moon suddenly became a stranger; as cataclysmic forces moved ponderously in their own mysterious dance in the heavens totally and completely outside of any human opinion or control. How come nature never checks if we want a bloody moon or flood or hurricane? Jeez.
My fear of the uncontrollable and untouchable however, was quickly replaced with awe and respect, because let's face it, stuff like that puts it all in perspective. Our life is constantly balanced on a knife edge of unknown variables which at any point in time can shift and change.
God knows a black hole can open up next to our tiny blue planet tomorrow and swallow us up into some kind of crazy dimension where reality is something else entirely. Where everything we think we know is obliterated. Or at least that's what happens in the movies.
But if it did...and as terrifying as that would be, I would probably welcome it with total awe, because black holes get respect people. Even as it will be obliterating my existence, I can't help but feel that crazy crazy wonder at the power and majesty of such a force...
I need to stop watching those pbs nature/space shows.
And reading.
And um...dreaming.
Anyway, back to the little cute storm that lives in my house and wrecks my house daily and in new and inventive ways: Leo's appointment was in the afternoon and we got to Boston in plenty of time. In fact we were waaay too early thanks to my ocd tendencies and that in itself might have sounded the death knell of the whole venture if we hadn't found a handy elevator to play with. Actually Leo had three whole elevators right next to the waiting area so for the extra hour or two we had to wait for our appointment all traffic going up and down in the building was abruptly detoured to the ninth floor. If I had a video camera that video would have gone viral for sure. I don't know which was better, the people stepping out - then realizing it was the wrong floor - then scrambling to get back in before Leo closed the doors back up, or the people who waited inside patiently for the invisible person to get in the elevator..
The time flew by. And we didn't get hustled by security either.


When we finally saw the doc, it went pretty much as I expected it would, though hoped it wouldn't...
What I hoped would happen is that the doctor would take the novel size three ring binder of his medical history that I had prepared, speed read it like ET, whip out his unicorn wand, tap Leo on his noggin three times, and proclaim with much ceremony that he's all fixed.
That would have been great.
Instead we got the whole scarecrow treatment; you know, that bit when the wizard basically tells him he's had a brain all along and that there are no take backsies or upgrades available.
He did admit to skimming his history but he did pay attention to his MRIs. All sixteen of them...
I won't lie and say I'm not disappointed. But I won't lie and say it was a total waste of time either, because now we know that we really did try all there was to try and that in the world of seizures there just ain't any quick or easy fixes. No magic wands you know...
But the doc did offer some perspective which we hadn't really visited in a while. He said that five years ago if they had told us after all the gloom and doom surrounding his birth that all we had to worry about with our Lion was a couple mild seizures a day, we would have been pretty dang happy. 
Now a week later after the appointment, thinking back on these words, I'm not so convinced that I didn't get suckered. Sure, Lion man was born with no brain and only given a couple months to live. Hearing that sucked. But it's been five crazy incredible years in which all that hard stuff has been redefined by his sheer awesomeness. So can I be placated by comparing his prospects now to his when he was born? I'm not sure. I think he's pretty much re-invented himself so new rules must apply. I think it was a sneaky tactic to lull me into accepting something I'm not naturally inclined for.
Can there be a scenario where having daily seizures is ok with me? 
Would it be easier to be ok with it if I remember that he could have died at three months old like everyone expected?
At first I thought hell yeah! I'd take seizures over his death ANY day. Who the heck would say otherwise???
But that isn't what is on the table anymore! The trauma of yesterday is not the one I'm dealing with today and it doesn't seem fair or accurate to compare the two.
He's a big ole five year old, rocking his kindergarten everyday, talking, running, pottying, pushing his sister off the bed, counting to twenty, reciting the alphabet, and doing a million and half things the medical team said he would never ever under no certain terms ever be able to do. So does it make sense to be content with his lot when I take this Leo of today and compare him to the deathly sick Leo of five years ago?
My answer is hells no!
I refuse to give up and accept daily seizures just as I, five years ago, refused to accept that my baby was going to die.
Back then, I ran into the storm, holding my baby and refusing to cower under the bed.
So I think my answer now is the same as it was then.
I'm not going to give up and accept seizures. Not now, not ever.
In the waiting room with us were several other families with kids ranging from six months to late teens. I got a pretty good look at all of them, trust me I had plenty of time, and I felt as if we: the parents, all kinda looked the same. We all looked like we had black holes over our shoulders and are trying our best to pretend that we didn't. We looked at each other's children and tried to smile, knowing full well the hell that we live on the edge of. 
There was a young mom with a baby who obviously had some major things going on and I felt a sense of familiarity as I watched her. 
She never once looked sad. She never once acted like a victim of a prank gone horribly wrong.
She glorified.
She roared in the face of doubt.
She turned to the black hole and opened her arms.
It was pretty cool actually. 
And I realized that even though today's Leo isn't the same one of way back then, and that I can't compare the two, I can remember that feeling of jumping, of gathering myself and giving it all I got. 
So yeah, I think the doctor was on to something...but that something has more to do with action than with passive acceptance. Acceptance can be active. 
I will remember Leo of five years ago not to placate or give me a false sense of security, but to remind me to be brave. To be brave and to never ever stop believing in miracles.
I will remember the feeling of facing down a storm.
And I will remember that there are many different ways to be ok with something; being passively beaten down into fearful acceptance or being accepting with a backbone of strength and faith. Cowering from the storm, or facing it head on. Seizures are not going to be the end of this.











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