coming out of the seizure monster closet

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)


lisa said...

Oh Danielle...I am crying after watching that video. That was very well done, BTW. Talk about survivor's guilt...I have it in spades.

I hate that you are dealing with the fear and the anxiety that seizures cause. I'm glad Trevy is doing so well in spite of them. Hugs to you my friend.

The Blatchford Family said...

Those are so subtle! I see my son have several seizures/day, and I had a hard time spotting Trevy's the first time through that video. I am glad that you were able to capture them on video for those who provide care for him. It would be hard to see them if you don't live with them daily.

It must be so hard dealing with these ongoing seizures. I hope that you and your neuro team are able to find something that will hold the seizures at bay, and allow Trevy to continue to develop and thrive.

happy's mommy said...

Lisa...what can I say but XOXOXO!!!! And you'd better NEVER EVER feel guilty with me!!!!!!!!

Blatchford Fam...they are easy to miss. Trevy's seizures always have been. Some as subtle as just his eyes rolling. But they used to cluster which left little to doubt. Now that they're not clustered it's easier to convince myself I imagined it. He's just twitchy. Whatever. But then he'll have a bigger one that leaves no doubt and eliminates all my second guessing. Or I'll catch one on film so I can replay it over and over again. Because I'm morbid like that.

Honestly...these seizures are MUCH easier to deal with than his spasms. Overall. It's only when I catch them on film and then obsess that I find myself feeling depression welling up.


Thank you guys for the support and well wishing...

We're waiting to hear back on labs to see if we can go up on anything again. If not...we'll most likely be trialing a diet. Trevor has become abundantly opinionated about food. I expect that'll be a joy. :)


Alicia said...

Remy has had two, and I havn't been blogging. Still, he is amazing, and moving forward with such intensity and joy for life that I can hardly stand or believe it. Still...two seizures after I chose to poke and prod at his tiny little brain, is too many.

happy's mommy said...

I miss your blogging, Alicia. I love your zest...


Kristen said...

(((HUGS))) He is so adorable. I'm just amazed at all that he does.

Sophie's Story by Elaine said...

I am so, so sorry that they are originating in the healthy hemisphere. I had no idea. I have been so consumed in my own drama that I hope that I didn't miss that point somewhere. That's heartbreaking.

I know...I HATE talking about Sophie's relapse. Because I have absolutely NO regrets about having the actual surgery. Just wish it could have been sooner. Though I am still SO ATTACHED to that little bit of tissue left. I can't bear the thought of it being removed. Makes me feel superficial.

happy's mommy said...

Kristen...thanks sweetie. XOXO

Elaine...You are NOT allowed to feel guilty either! Of course you're consumed with your life right now! Cross my heart...I am okay. Really. But I need to stop watching that stupid video!

I am educated "guessing" that they're coming from his right hemi. They look very left sided to me...soooooo...

I know the head drop was much easier to miss than the myo jerk. But in slo-mo...it's very clear that his eyes deviate up and to the left.

So that's why I'm saying right hemi. His neuros have not said that...that is coming solely from me. However, I think I've earned the right. Hahaha...so take that doctors!

And you are NOT superficial!

Love you, hon...


Anonymous said...

Hugs Danielle - it's heart-breaking to see them/any seizures, especially after the huge surgery decision.

I know I would feel sick if i saw them in Henry.

But also survivor's guilt here, as far as we know (EEG in 3 days time!) H is S-F after his surgery, our regret is not doing it sooner (read: getting the docs to sort it out earlier!) and I feel so bad for all those families still going through the IS nightmare :(

If you go with the diet, fingers crossed it works miracles, kt x

MJStump said...

I am sending you a hug, not the kind to make you cry...just the kind to let you know I care.

You are amazing for catching all that you do...ironic thing is that others have seen Kylie's first seizure video and see nothing. That is why you are his mommy...you know all things Trevy.

I totally get what you mean by survivor's guilt. Our struggle wasn't what most are, and my heart aches for those still going through it.

I have already lost some IS friends because of where we are now.

Praying that all the smiles and giggles fill your heart.

blogzilly said...

I can't express to you how much I loved this post and admire you for it. You know how I feel about you. We have had our ups and our downs. And we had our little private rough patch recently, which all centered around some of your SG, my G, some misconceptions and my failure to communicate to you properly about some things I was trying to say.

But to see you so openly 'come out of the closet' like this is amazing. It's as beautiful to see in its vulnerability as much as it is difficult to see how painful things are for you in navigating it.

I'd never considered one thing you mentioned, the part about a fear of influencing any potential future parents in making a decision not to have surgery based on our experiences with surgery and the aftermaths.

There is a strange irony here. Thursday night I got a phone call from our former Physical Therapist, who wants me to speak to a local couple about Bennett's experiences with Epilepsy surgery, since their daughter, age 4 I believe, may be having it. I agreed to of course.

Then you write this. Which forces me to remember what an AWESOME responsibility that actually is. Because I wasn't. I mean I was, but I wasn't, does that make any sense? The situations are totally different, but your blog appeared in front of me at precisely the right moment to clarify something for me regarding elements of my own Guilt, things I have yet to even write about myself.

And I'm not talking about just Survivor's Guilt, which of course I have, I mean just Guilt overall. But I don't want to hijack your blog, I'll deal with that another time.

Anyway...as always, you have me wondering about coincidence versus...something else. Dammit.

Have I told you I hate all childhood disabilities today? I really effin hate 'em all.

happy's mommy said...

kt...love to you, hon. Hoping Henry's EEG is completely clean AND seizure free!

Jody...I hate that you have lost friends along the way. I know the pain. I keep telling myself there are friends for seasons. It makes me feel better...even if it's not true. :) xoxo

Kenly...and you know I feel the same about you. I really think you're my long, lost (older!) brother.

And for what it's worth...I think you should reach out to that family. Offer them whatever you can. You have a lot of wonderful insight to contribute... Also...it just feels good in the soul to support someone else.


Sinead said...

A timely post. It's funny. Just an hour ago I was driving down the road and heard myself say out loud "isnt it weird that I am pretending to myself that Emma didn't just have a seizure in musikgarten". I shook my head and smiled and kept pretending.

I don't really want to face people saying the surgery didn't work because she is still having seizures. I don't want to face it because my miracle is not their miracle. My miracle is not measured in picking of clothes, flying of arms, weird noises and stiffening, zoning out. My miracle is witnessed in a child who can sing any song after hearing it twice, who went up to her teacher and said "bafroo" cause she needed to pee, who can put a cup back in the sink or take her jacket off. Her miracle is not the fairy tale happy ending but there was nothing fairy tale about her seizures.

It pains me to no end to see Trevor and Sophie having seizures still. It hurts to know Emma has them too. But it gives me great joy to see their post surgery transformation. To see and hear how well they are doing despite seizures is wonderful. Hugs.

Heather said...

Hi there Danielle. I've been a lurker on here for a while and really enjoy reading your posts. I figured Trevy was still having seizures, however, all of your posts still brim with HOPE and I love that about you.

My son has epilepsy too-- don't really know what kind yet. He is 9 mos. old and his seizures are very subtle like Trevy's. In fact, everybody, including my own husband thought I was going crazy until his seventh EEG (YES-- 7th) finally showed seizure activity. Not that I was happy about that- honestly, I'd rather be crazy. :)

Anyway, I've been praying for little Trevy for like the last five months and will continue to do so. :)

happy's mommy said...

Heather...thanks, honey. And wow...it took 7 EEGs?! That means LOTS of pushing on mommy's part! And I knoooooow how exhausting that can be. (((((((hugs))))))))


Anonymous said...

Late again. Sigh.

I just read a post about forgiving oneself. Here it is:

I'm worried about you second-guessing yourself. Asking you to let go of that. For both of you.

Heh. You might as well quit telling others what to do, too - "You are not allowed to feel guilty." Piffle. And, probably, you know you cannot command that. At the same time, I want to validate all your feelings. I can only suggest to remove your focus from yourself.

I'm focused on your neuro doc finding the correct formula for him. The word "Tourette's" comes to mind. Worth asking her about?

Virtual hearts and flowers, Barbara

happy's mommy said...

Barbara...thanks. Love you! And yes...I'm laughing!


Colby said...

Sweet Danielle...As I think I told you, I have taken a "vacation" from "most things seizure" for awhile...I just needed it...I haven't even posted on my Colby's blog for months and months....

I do want you to know that I am thinking about you guys and will continue to send up prayers for your little one....I can't imagine what a sinking feeling it must be...To go through all you have gone through with your boy, just to see the dreaded beast rear it's ugly head...The only thing I can relate it to is the day or two of pure elation when we start a new Rx or increase one and have no seizures for a number of hours...But that can't come NEAR what you and the other "hemi parents" go through who see a relapse...

Just know that I am cheering you guys on and will always be here for support...

Hang tough, sweet lady!


Mrs. M said...

Oh Danielle *sigh*
You're amazing. You're normal. You're a MOM! That in itself brings on all sorts of emotions.
I am so sorry that Trevy's experiencing seizures. Those blasted monsters just keep rearing their ugly heads. I hope your rockstar doc and all can get the meds tweaked just right.
On a much smaller, smaller level elements of your post are very familiar to me. The guilt when things are going "well". It's easy to feel that way...for us around TSC friends who are really struggling....and then there's the almost invisible seizures and the fears, the ignorance of some people, the fear, the watching, etc. That's our Bup. He has these seizures that no one else, other than my husband and I get, he stops looks at me with this "look" goes almost silent, then quietly says, "I feel funny. In here and pats his chest." Then there's the "wiggly hand" seizures.
Both of which are very telling and huge to me....and we FINALLY have a new neuro who we are meeting next week.
My rambling point is....as you well know...the seizure monster looks different to every sweet innocent child/person...we Mom's must always go with our motherly gut instinct/intuition....cause we KNOW. Maybe our medical degrees are honorary...but we KNOW.
Trevy is so blessed to have parents and family that see his gifts, his potential, those blips of seizures...and love him and protect and help Trevy to the ends of the earth. Trevy is truly blessed in so many ways.
Hang in there Danielle. Grab a frayed edge and hang on!