8 glorious months.
8 glorious delicious months.
8 glorious deliciously free months!
8 glorious deliciously seizure free months!
Just like that.
Well...not really just like that.
And that's my point entirely.
See...this post has stewed & swirled in my heart for a LONG time. But just as I would start to put words to my heart thoughts (which isn't as easy as it may seem). I'd click delete. Believe it or not...I don't enjoy being disliked. Or making waves. I'm ultra susceptible to soul conflict, you know. I've heard moving to the Nebraskan wilderness is a potential cure? Someday perhaps...
But then again...maybe you can take the uptight New England girl from Upthebootville...but you can't take the...well you know the rest!
Here's the thing.
Even though Trevor was labelled lucky four injections into our first round of Acthar.
My heart could never really come to terms with that. Being lucky. I always always felt haunted. Hunted. Stalked. Baited breath...waiting for the other shoe to drop.
I spent every one of those 8 glorious deliciously seizure free months with my stomach in knots.
I've heard it said that some people. The lucky people. Move on after Infantile Spasms. Never to be heard from again.
I have a hard time wrapping my heart around that. Probably because I never did. Of course...hind-sight being 20/20 clears up the fact that I have a right to my knots. Because even 100s of thousands of dollars of Acthar is NOT a cure. Right, Questcor? In fact...we have now spent more months fighting the seizure monster than we did running from it. And I imagine if we took a poll of the lucky ones...we'd have enough stomach knots to do a fine job of convincing the world that Infantile Spasms is not something that's here today. Gone tomorrow. Unlike seizure freedom.
Wanna know something else? I think I always had a right to my fears. I think every IS family...even the lucky ones...has the freedom to feel fear knots. Of the unknown ahead.
I think that even though Trevor was (so-called) lucky. For 8 months. I think the fact that we ever had a crash course in Infantile Spasms worked to negate being called lucky.
In fact...I don't think we ever were lucky. (in the seizure-free sense)
It certainly didn't feel lucky pushing the thick-cranky-inducing-blood-pressure-raging hormone into my screaming child's thigh.
Just as it didn't feel lucky having a seizure-free-after-four-injections-of-Acthar EEG reveal that his little brain was still in a storm...even if it was smaller.
And for crying out loud...it doesn't feel freaking lucky NOW when I hold him through clusters all day! And I don't give a flip at how high functioning (God...I hate that label!) Trevor is! He is being...and always was being...ravaged by this beast.
And I think it sucks that I ever tried to convince myself I was lucky. And I think it doubly sucks that I had others telling me I was lucky.
That's right. Sucks.
I mean how do you justify telling someone whose child has had not just seizures. But Infantile Spasm seizures. That they're lucky? That they should shut up and move on already? Just because their child only had 600 seizures before striking the lucky jack-pot. For what would be a measly 8 months. Like somehow 600 seizures isn't a big deal? Like somehow being handed a diagnosis of Infantile Spasms is get-over-able! A couple months later?
That's right. Just four short months into our lucky (ticking time-bomb) months. I was told in an email (more than once actually) to move on. To stop sharing my story. Because it was causing pain to others. The un-lucky ones. And how disgustingly dare I continue to rub in my lucky-ness.
Are you freakin' kidding me?! Of course...I say that now.
Oh and how I wish I didn't let it get to me. Hurt me. Guilt me. Torment me. But my silly little guilt-loving heart was torn to pieces. Ravaged. To the point that for awhile I stopped posting in the forums. Even though I had questions. Craved community. And answers. Many times over I thought about making Trevor's blog private. Or shutting it down altogether. For I was already saturated with Survivor's Guilt. I HAVE eyes. I HAVE ears. I HAVE a freakin' heart! I didn't (and STILL don't) need to be reminded that Trevor was (is) amazing. A miracle. Trust me...my heart was already shredded by that fact. Long before the lashing came. And it took courage (for me) to continue to share my story. Honestly. Openly. Seizure free-ly. Moderated comment-ly.
Deep down...in that place where things are felt strongly. Passionately. I knew. I think I always knew. In that unexplainable way. That our journey was far from over.
But maybe it has nothing to with a sixth sense at all.
I mean...look around people!
It doesn't take long (although it may self-less compassion) to see that more often than not...the luck runs out!
It may be 8 hours in. Perhaps 8 days. 8 months. Or even 8 years!
In fact, when Trevy's IS relapsed. I was contacted by a mom (btw if you're reading this...please email me...) whose son had been seizure free since their first round of ACTH...until he was 10ish. And then BOOM. Seizures. Spasm seizures. After freakin' YEARS! I watched that video clip and bawled my eyes out. Not because he could read. Or was adorable. Or lucky for so long.
I bawled because the monster that is Infantile Spasms is that far reaching. Like a vicious beast always hunting our children.
I bawled because every family deserves to feel deeply...honestly...all the emotions that having a child with THIS diagnosis brings.
And they deserve to share their story. Authentically. Honestly. Joyfully. Seizure free-ly! Even if their luck never does run out!
Those stories not only deserve to be told...they NEED to be told!
I hear from newly diagnosed families all the time...that the stories of hope are so few. So far between.
Maybe those stories are left untold...not because they've moved on. But rather because they haven't. And feel so incredibly sad...and guilty...and fearful of rejection. And it's just easier to be mute.
I don't know. I'm just guessing. Educated guessing.
That I will always always have a soft spot for the lucky ones.
Because Trevor's story has (is) encompassed both sides of the spectrum.
And I'm promising the families struggling with Survior's Guilt. You don't have to here. With me. My heart feels joy that you have something to celebrate. Dancing with you is like food for my soul! My heart also understands the fear that you try not to feel. And the guilt that comes with it. And I need you to know that you are NOT rejected!
And I'm promising those waging war against the seizure monster. Day in. Day out. My heart breaks with you. I am in the trenches beside you. We are brothers. Sisters. Family. And I love you in a deep (perhaps slightly creepy) way!
And I'm promising those that may feel outrage over this post. You are not alone. I have felt outraged too.
And lastly...I'm promising myself. Trevor. That if he should have this surgery. And should we be lucky again. I will celebrate his success with everything I have in me. I will try to slay the guilt that loves to plague me.
And if you shouldn't, Darling. And we battle seizures for the rest of your life here...
I am vowing with all my heart that I will wrap you...my always amazing...beautiful...baby boy up in a great big juicy bear hug...
And count my lucky stars!