Skip to main content

sadly sunday

Isn't it crazy that the same child...

can take the same drug...

for the same thing...

and somehow not come up with the same results?

I tried not to let my heart get the best of me. I tried not to imagine how things would work this time around. Because as much as I like to know...I knew better than to start guessing. I'm way smarter than that. And yet somehow I couldn't help myself.

I allowed myself to play with the idea that we caught it early...and to remember that Trevy responded so quickly last time...

And I just couldn't help it...

I allowed my heart to hope...to dream...to embrace...the idea that this time it would work for good! Faster even!

And that would explain why I'm being swallowed up by melancholy. Not only is Trevor miserable. Inconsolable. Not only do we have to pin him down for 5 weeks of morning sticks. Not only are we living with the perpetual pit in our stomaches. A thousand not onlys...

have led to a different outcome. On day four of the time before...the spasms were gone. Poof! On day four this time...the spasms are still bobbing his beautiful little curly-top to the right. Eight times so far today. And even though we have had days with way more than eight....my heart doesn't register a difference. Spasms are spasms.

And that would be why...on this particular Sunday...I happen to be feeling sadly...
Labels:

Comments

Mrs. M said…
Oh, your poor little curly top!
It's so wrong isn't it?
I totally understand the hope and unconscious convincing of one's self that this time will be the same or better...and then things change...or don't.
I hope Monday is a wonderful Monday for Trevor with no spasms and that it's the beginning of something better.
Kiss & hug both your tears away. Needle pokes are awful. It hurts to knowingly hurt your baby in the name of helping him. Even though you know you're doing your best for him, it still hurts...I get that.
I wish you peace today, Danielle. Peace and love and cuddles and smiles with Trevy and your whole family.
My heart is with you.
M.
September 14, 2008 at 11:19 AM
JSmith5780 said…
I am so sorry he's not responding as quickly. Have faith, he'll get his miracle again.

HUGS
September 14, 2008 at 11:49 AM
Monica~ James~ Connor said…
Keep the faith, maybe this time he'll knock them out for good!!! That is our hope for your family, because unfortunately in the past 20 months since Connor was diagnosed.... I can count on one hand the number of days he has been "seizure free". I just have a feeling it will work again for Trevy! If you feel like crying...just do it. I know I always feel better after a good crying session....ugly crying face and all. =)
September 14, 2008 at 7:15 PM
Danielle said…
Thanks girls! I'm feeling better today...maybe I just needed a good sleep? Which thankfully we all got! I've learned to let my emotions rolls...they always pass in a day or two. I feel things deeply...good & bad. We ended the day yesterday with over 30 spasms...and it was just really hard on my heart. But Trevy woke up happy & seems very alert & less crabby? We'll see... We start Zonegran today too...so maybe the combo will do the trick? I hope so...
It's really tricky to move from thinking you've *beat* IS...back into the battle. But I am hoping for Trevy. He's such a fighter. We love his little fighter spirit!

Anyway...we're off to give him his shot. Ugh...I always have a pit until it's over.

...danielle
September 15, 2008 at 4:48 AM
KC's Warrior Mama said…
I know it's so hard to continue to hope when you are in this dark place, but good for you for finding it in your heart to do it. Whether Trevor has another spasm mive minutes from now or five years from now, you are going to feel devestated, but those moments in between are sometimes all we have. Here's hoping that the Zonegran is just the backup that ACTH needs to kick IS's butt to the curb again ; )
September 15, 2008 at 5:43 AM
KC's Warrior Mama said…
I know it's so hard to continue to hope when you are in this dark place, but good for you for finding it in your heart to do it. Whether Trevor has another spasm mive minutes from now or five years from now, you are going to feel devestated, but those moments in between are sometimes all we have. Here's hoping that the Zonegran is just the backup that ACTH needs to kick IS's butt to the curb again ; )
September 15, 2008 at 5:44 AM
Mama Skates said…
hang in there girl - have faith! i'm thinking of u always!
September 15, 2008 at 6:41 AM
Shanna Grimes said…
He'll get there. Sometimes it just takes a little patience.

Hang in there!
September 16, 2008 at 11:58 AM
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

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

it ain't sexy livin' on an island...

Especially when you have to cross bridges to get ANYWHERE. Very LARGE bridges. The crests of which I inevitably get stuck at. Speaking of...why is it that at the tippity tops of our bridges...the railings always open up? To reveal an eagle's eye view of the white capped depths below? I HATE that. And sure enough...in route to Dr. Pedi yesterday...they must have seen me coming cause traffic ground to a halt at the top of the Mt. Hope Bridge. Where I felt less than Hope-ish. My palms gushing my nerves onto the steering wheel for a good 15 (felt like forever) minutes. Not just things medical bring out my cowardly lion. Heights do too! Anyway... Grabbed an iced coffee and chocolate cream filled to settle my nerves on the way. And we arrived on time...in one piece. Of course. Dr. Sick-Visit-Pedi breezed in chart in hand. Glanced down. Then at Trevy. Then said... "He has a history of Infantile Spasms?" Surprise and speculation in her voice. We get that a lot. It...
13 comments
Read more