Skip to main content

oh ME of little faith

She NEVER does that.











NEVER.











EVER.










She always calls me on my cell. I thought it was, like, an unwritten rule or something.










So when I answered the MagicCrap phone I was totally not expecting to hear her voice. And it took an extra second for my brain to register recognition.










It took another few to process what she was saying. Her thick accent. The crappy connection. The emotional tidal wave.










But when it finally sunk in. Sobbing that obviously has been laying dormant for months flooded upwards. And suddenly I was a gasping. Choking. Bawling, Mess.










Embarrassingly so.











But I couldn't help it. Hard as I tried. And I was trying. Cause my mom...and another friend were in the living room with the kids.










But SO flippin' much emotion has been held at bay. And my heart burst like a dam that couldn't hold one more drop. I didn't even realize that I felt this strongly about this.










But when Dr. Neuro told me we were...







APPROVED.TO.GO.TO.DETROIT.











I bloody lost it.











In fact, she finally said, "Danielle...calm down. Stop crying!"











::gasp gasp...blubber blubber...choke choke::











"Didn't you just email me THIS morning that you had people praying?!"












We both laughed. It was TRUE. I HAD emailed her that morning. Yesterday. All brave bluff. And no faith. SO me. SO Him!











::laugh::












Okay....








So even though I'm over the moon about this news. I feel like I need to clarify. That although this option...the brain surgery option...is widely considered a miracle chance amongst IS families. Dr. Rockstar hasn't set anything in stone. Plaster of Paris maybe? There is still testing to do. And surgical committees to approach.









And even should everything move forward in the direction that I'm (and so many others) are praying towards.










This miracle option...is truly. Utterly. Completely. Sick to my stomach-ly.









Barbaric.









And scary. And horrific. And so unreal...that I have a hard time wrapping my heart around being happy about this. It's bizarre on so many levels. Lrvels that really only other IS families will truly understand. In fact...I probably don't even need to voice it for them. I think you guys would all agree? That some IS things don't need words...because we just get it in the gut. This clarification is really more for those that (by God's Grace) will never have to hope for...to pray for...barbaric options. On an intimate level. You're SO totally not off the hook on praying for Trevy!










And this is truly just a mini-step forward. So much to do. So much to fret about. So much to hope for. And organize. And totally freak out about!










BUT WE CAN GO! WE CAN TRY!












Without filing for bankrupcy! That crossed my mind. Seriously. Along with many other super crazy thoughts!











And now I can't stop rubbing Trevy's curls. Which despite Jonathan's shaggy dog comments...I WON'T snip. Just in case. They don't grow back...







::sigh::








This is just the beginning. I know that.











But it just tingles in my soul. That a new chapter is opening...










And I'm not gonna let pessimistic me rule. Not today anyway...











(those that know me best...already know...that I'll keep the deets coming as I get them...)

Comments

JSmith5780 said…
I can't tell you how awesome my day was yesterday (despite driving to Boston and home in the crappiest weather) to getting your phone call and then getting a call from another IS mommy with her fabulous news of no hypps. I am just so happy for you both. You both have waited so long for good news.

And incase my test message wasn't good enough... YAY!!!!!!!!!
Bacon Wife said…
OH danielle!!! i am just so happy! i know that i cannot even phathom what you are experiencing emotionally but i know for me, as someone who has been praying constantly that something would give and that Trevy would be given the opportunity to see Dr. Rockstar, I am crying my eyes out with joy...so much so i can barely see this screen! Love you bunches and we will continue to pray.
brendalynn said…
yayyyyyy!!!!!! thats awesome!!! im sooooo happy for you guys! still praying for you. i love you!!! give trevvy a hug for me!

<3333333brendalynn.
Carolyn said…
THIS is were we do the happy dance!!!
Holli said…
Just like in my email...

WOO-HOO!!!!

So, so, SOOOO happy you guys can move forward now!!!!

Love ya!!
Holli
Anonymous said…
Barbaric, yes...unless you believe.

I feel only privileged to be on Trevy's hook. Barbara
Adesta said…
Ok, my coworkers are looking at me funny. It may have something to do with me squealing out loud when I read that you can go to Detroit!!! Who cares what they think!!

I'm so frickin happy for you guys! Yeah! I have such a GREAT feeling about all this D!!! I have a feeling that Dr. Rockstar will be able to help Trevy gain seizure freedom for good! Of course I'll keep the prayers up!!! {hugs to you all!!!}
Mama Skates said…
whoooooooo freakin' hooooooo!

so happy 4 u sweets! & still praying harder & harder!

xoxoxox,
sharon
blogzilly said…
Pessimism can certainly take the day off for just today I think. :) It's great news, it's the right step and I couldn't be happier for all of you.

-Ken
Charlismomma said…
I think the 7th and 8th should now officially become a holiday. Days where we felt a new wind blow into our sails, and carry us forward (or simply just want to jump up and down, yell a lot, eat lots of chocolate and hug every single person with IS we know) I am SOOOOOOOOOO happy for you, I'm a balling mess now. I'm so happy for ALL of us. HUGS!!!! XOXOXOOXOXO
Cindy G. said…
Danielle,
I am so ecstatic for you. I absolutely love that God surprises us even when we doubt. He NEVER, EVER gives up on us, even when we have the most pathetic, teensy bit of faith!!! I will keep praying fervently for Trevy and for the whole family.....and hey, is Rockstar really his name??? cuz THAT is just cool!!!!
Love you guys...give Trevy a big kiss and hug from me!
Anonymous said…
YAY!!!! I am SOOOO happy for you Danielle. Isn't it the oddest feeling in the world...hoping your son can have brain surgery??? When we were waiting to find out if Hannah was a candidate, I allowed myself to go there...you know...the possibility of getting rid of seizures? a CURE??? Then when they told me it wasn't going to happen, I felt like I got the wind knocked out of me. "Yes, I am upset and crying because they AREN'T going to cut out part of my child's brain." Seems so backwards.
Anyway, baby steps are good. You are moving in the right direction and God is with you. Stay strong. You can do this!!!
Marcia K
Anonymous said…
I'm so happy for you. Yes, I felt the same weird way about surgery. Who would ever hope for brain surgery? LOL. Good luck!

Erin
**HAPPY DANCE** HAPPY DANCE**
So so happy for you guys!! Yeah we are all an odd bunch wishing for brain surgery, but when you've been at it this long any miracle is worth it. Keep us informed!! Love you and Trevy!!!
Melanie said…
doing the happy happy happy dance we are. Daniel and I! I so hope everything goes well. It is a scary thought I am sure for surgery, but you have a ton of people praying for you....and I know first hand Dr. Rockstar is awesome. (we aren't surgery candidates -our seizures are bilateral) but he is great one on one!

Popular posts from this blog

I cried when I got the news

I felt like such a heel not going with Trevy for his first post hemi EEG. Yeeeeeees...Jonathan went with him. Yeeeeeees...he's just as good as me. But still! He's my baby! I was instead sitting on floor 6 east waiting for Neurology to get their boots here and help me sort out this medicine mess! Seriously it's like a bad joke...how many Neurologists does it take to write a bloody script? And fax prior authorizations? Cause Trevy's been back for hours now. And I'm STILL waiting! Anyway... Jonathan had just stepped out to meet the pizza delivery guy when Dr. EEG made his rounds. Of course I asked immediately if he had read the EEG. Of course he had. That's why he was there afterall. And I cried when he told me... that for the first time in almost two years. For the first time since this whole crazy mess began. my baby's EEG is completely normal! Side Note: It's super fun to sob in front of Japanese men and watch them squirm When I kept repeati...

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...

it's like being asked to the prom...

only MUCH MUCH bigger! I had noticed (yes...I stalk my site meter!) that a government ISP had logged onto Trevor's blog. Whoever it was had spent a good deal of time hanging out too. Followed a few minutes later by a government ISP...hailing from Washington. As in DC! My eyebrow raised. It was just kinda odd. Note-able odd. You know? Anyway...later that day (last week) I was folding laundry & thinking my crazy insane thoughts. Along these lines... I hope I'm not saying anything I shouldn't! Maybe I made somebody mad? Wait a minute! I live in America! I'm allowed to say anything I want! Aren't I???? A shout from the other room interrupted my thoughts before I had a chance to further mull. It was Jonathan. I had just received an email. **Side note...he's always doing that! Reading my emails! Sheesh!*** The said email was from a US Senator's aide! Asking if he could speak with me. Little ole' hardly has time to splash some make-up on ...