Skip to main content

brutal




"The most brutal part about it is that one minute he's jumping over puddles and just a little boy alive with joy.

An hour later he's tired out of his mind and doesn't even know what day of the week it is."

This was Jonathan's summary of life with catastrophic epilepsy after Trevor's longest seizure to date. A seizure which forced us to pull off the road on our way home from our weekly family nature hike. A seizure which stole him away from us for four impossibly long minutes. A seizure which terrorized our hearts as we helplessly watched the drool pouring from his mouth while his body was under siege. A seizure that left us shaken the rest of the day. A seizure that forces us to face the unthinkable; complete the hemispherectomy. My heart is just so fragile and worn. I look over my shoulder and wonder how we found the courage to make that decision all those years ago. But then I remember it was much more hopeful then. My heart was much less sorrow drenched. I look at him skipping along the shore. I listen to him rattle on about this and that. And I think we just don't have the courage in us this time. All we could lose looms over our hearts with a weight more dense than words. Then he seizes like that and our knees give way and impulsively our hearts turn towards the nightmare decision that is radical brain surgery...again. We feel so isolated in our heartache; so numb. Catastrophic epilepsy is brutal.
Labels:

Comments

Brenda said…
My heart aches for you. I can’t even begin to imagine. I have seizures. I hate to even say it in the same post that talks about Trevor’s seizures. They can’t compare. And as scared and tired and out of it as I have felt, to know that poor baby has to go thru what he dies almost daily just hurts my soul. And Momma to Momma, all I can say is I have and will continue to pray for you all. No Momma should have to make these decisions. Bless you. And Daddy and brother and sister, too. It’s just hard. I hate the word suck. But I hate seizures worse. Seizures suck! Praying for you!!!!
January 22, 2018 at 11:30 AM
Danielle said…
Your words are so sweet and meaningful. You have a layer of insight that I don't. I only understand epilepsy from the caregiver role, so hearing your heart is really special. Thank you for sharing that with me. And thank you so much for praying with us. I have no idea what we're going to do, I just know this is so heavy and hard.
January 22, 2018 at 2:39 PM
Post a Comment

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...
14 comments
Read more

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...
27 comments
Read more