I have Survivor's Guilt.
There I said it. Finally. Lord knows I've thought it for as long as I can remember. Before radical brain surgery even.
You cannot have a child like Trevor. Who shares a diagnosis with children like some of yours. Children whose seizure (and/or other diagnosis) scars are more easily visible. While he continues to bloom. No. You cannot have a child like Trevor and not have it tear at your heart when others suffer more. All the while sowing the seeds of Survivor's Guilt in your soul.
Even if you do see seizures post surgery.
That Guilt (or is it empathy?) has muffled my desire to share Trevor's on-going seizure activity openly.
Because I feel terrible. Awful. Freaking guilty! I know the war that many of you wage on a daily basis is much more bloody than ours. And I know that Trevor is a miracle to many IS families.
On the flip side...he is to many others...a worst nightmare. The kid I could never have. A how do they do it inspiration. Friends from the past and present look at our life and whisper in their hearts, "How sad" followed by "shew...glad it's them and not us". And then hug their healthy kids a little tighter for awhile.
Both sides have roots into why I have stayed silent for so long regarding Trevor's post hemispherectomy seizures.
I don't want to be pitied.
I don't want to be judged.
Because I have been the recipient of both scenerios it has been easier to stay silent. To not blurt outloud that we're seeing seizures a lot. A LOT.
Not huge, scary seizures. More subtle, easy to miss seizures. But seizures none-the-less. And trust me, I am well aware of what havoc subtle seizures can wreak on little developing brains. Seizures don't play fair. It's not just the big, scary ones to fear. And that knowledge goes a long way towards explaining my recent Matt Lauer rant.
Over the past year, as we've noticed breakthroughs, we have fiddled with his meds. Which helps for a while. But they always creep back in. A stare off here. A myo there. A God that looked an awful lot like his spasms here. A headdrop there. Until we can no longer ignore it. Or convince ourselves that it's just figments of our over active imaginations. And we call Dr. Neuro to discuss options.
I received some (quite a lot, actually) email feedback regarding my most recent sap-fest. I felt that maybe it was time to just let it blow.
Yes. Trevor is having seizures.
And Yes. It scares the crap outta me.
Also Yes. I feel guilty for even mentioning it out loud. Not just because the seizures we're seeing are subtle in comparison to what we faced in the past...and what so many of our IS friends face in the now. But also because I worry that knowing Trevy is seizing may sway those given the Nightmare Miracle chance at surgery - towards opting against.
Which is why I want to emphasize No. I do not for a single moment regret choosing surgery. Even though it's pretty clear the seizures we're seeing are originating in his healthy hemisphere. Most likely from that "area of concern" Dr. Rockstar noted so long ago. We always knew this was a risk we were taking. It is very clear how much of Trevor's potential was locked behind the broken left brain. Removing it was the best decision we ever made. He said, "Mommy" five times yesterday. The only regret we have is not pushing harder sooner. And probably...not braving a full hemi. I don't know why I was so attached to that island of tissue (motor cortex). It continues to spike often in spite of the MST. And I wish now that we'd just removed it all. Hindsight.
(I created this video for Trevor's school care-givers to have a visual of the seizures we're seeing...this is only what we've been able to capture on film)