notes from the rockstar

Does it make me a pessimist if my heart leaps to my throat every single time I find an envelope post marked from a medical facility in my (almost rusted through and needs mad replacing if Jonathan will just remember to order the one I want already!) mail box? (I tasked him with house things...so my brain is free for medical things. It's only fair! :)

Every time...without fail...I have to fight through that "oh crap" sinking gut before I have the courage to break the seal. Sometimes...I'm not ready on the spot either. And I'll set the thing on a shelf. Where...no lie...I hear evil little voices taunting me every time I'm within ear shot. Until I finally cave and open it.

Most times it's something silly. Like a survey. Or a reminder. Or a notice that such n' such service is capped or no longer supported by our State. Rhode Island has been rolling services heads (most of which I don't take advantage of...and will someday share some of my thoughts regarding) left & right. This was precisely why I was SO fret-a-licious about Trevy's surgery being covered. It's why my confidence was wavering. I know that's old news. But still...

Sometimes it's a bill. I loath the bills. Hate the bills. Death to the bills! Especially the ones that I thought I'd already handled. And the majority of my sinking gut reaction is wrapped up in the random bill issues...dressed all smart in white envelopes. I hate them because even though it's usually an easy resolve. The resolution always involves phone call. I am SO not a phone girl. And besides I'm convinced Ms. Cranky on the other end has been waiting all day. Just for me! Maybe you didn't know...but I once worked in a call center. Collections. I was the nice girl. But Ms. take-out-my-stress-on-the-stranger was in the cube next to me. I know the tone well. And am prickly off the bat. Although...in the spirit of integrity...the past two times I've had bill issues I did get lucky. Mr. & Ms. Nice respectively. I thanked both of them until I could hear the blush in their voices!

But sometimes the envelope holds something more. The printed thoughts. From Dr. Development. Or Neuro. Or Rockstar. And even though I half dread reading the notes. Because doctors have a way of framing my child so that my heart breaks a just little more. I'm also half hungry to read their mind. I crave a firm grip in reality. Which is why cliche people drive me bonkers!

**Insert recent stupid filter moment...which may I warn you in advance IS ranty**

I use wit to break the ice. Okay. And to help my heart. Which would be why when I learned that Trevy was a surgical candidate I said "I hope his curls grow back!" Honestly...although I adore his curls and do hope they grow back...curls are really very low on my priority list! I was being witty. Or at least trying. And I've discovered Cliche Lovers just can't help themselves. I should probably cut them slack. I mean...what DO you say to someone who's standing in the brain surgery line? My recommendation? Nothing is better than something...if that something is cliche. But that's just me. I sure wish the Cliche Abuser that left me the little nugget "Just ask God...He WANTS you to ask" would have embraced my mute philosophy. Because unintentionally so-n-so sent me through the roof! I HATE that style. I mean...for cryin' out loud...if all I had to do was ASK? All this time? WTH am I doing here?! With Seizure SATURATED Boy? Standing in the flippin' brain surgery line? When all I had to do was just ask?!?!?!


**Okay...rant over**

I was getting somewhere!

The other day...my heart sank with the envelope in the mail. And when I finally found the courage to open it. Inside where the notes from the Epilepsy Surgery Conference. Held August 17th, 2009. I won't bore you with all the deets. Just a few.

  • Trevor...is a 2 year old left-handed boy from Rhode Island - this line made Jonathan chuckle.

  • ...with intractable epileptic spasms - see...this is what I'm talking about. Did you hear my heart crack a little more?

  • ACTH...proved...efficacious for two months - EIGHT months! Come on'! How many puppies does it take to get an accurate history?!

  • His seizures subsequently relapsed - It's always struck me that seizure freedom is referred to as remission and relapse. I suppose that's because there is no cure for epilepsy at this place in time.

  • Neurological exam revealed stranger anxiety - Dr. Rockstar said this is good news!

  • ...and poor comprehension - crack...split...chip...goes my heart.

  • Video EEG monitering at CHM revealed hysparrhythmia - How is my heart supposed to keep beating! Can't you throw me a modified hyps bone?

  • He exhibits axial hypotonia - fancy for low trunk tone. Don't feel dumb...I had to ask too.

  • There was considerable discussion - I suppose this is why Dr. Fellow repeated multiple times that the consensus was unanimous?!

  • ...and the consensus was that he is a candidate for epilepsy surgery. - Am I the only one that feels there should be a punctuation mark that is not boring like a period. But not thrilled like an exclamation point? Because my heart...after reading the notes...was somewhere in between the two.



I'd better run. I think I just heard the mail...


blogzilly said...

It's still set for October right? No changes in any of the set forth plans, this was just the written element of all the notes and such from the conference.

Hmmmm...how much angst will get in you if they up the date to say, next week or after? Might happen, you never know. Happened to Elaine. You prepared in the event they want to bump you up?

Holli said...

Right there with you. When I got the reports in and read "intractable epileptic spasms" and "developmental delay", it hit me like a Mack truck. Both things I knew. But never anything I'd read...from an expert's point of view. It's brutal.

By the way, we had some errors too. As many times as we have to repeat their history to the same dept, you'd think they'd get it right! And in Trevor's case, especially something as important as seizure freedom!

baby trevor's mommy said...

Oh Ken...you had to ask didn't you!? ;) I've thought it myself. I don't know if you're ever ready. But we're committed to this now. So if they called today...and we could work out everything...we would go. In some ways...I'd rather have it over. Sometimes. I'm very flighty with this...


Anonymous said...

i agree with Jonathan, that one line did crack me up, except that they left out all the adjectives like cute, curly-haired, belongs to great parents...etc...

i agree with you, while i am bad at sometimes saying cliche's (like the one from college that still rings in my head all the time "garbage in, garbage out" HA!)to me, they have never helped me or encouraged me... some straight up honesty always works best for me (or silence).
we seriously did add it to our prayer list but God knows that we are just being comical to help make the extremely heavy situation a little lighter AND with all the heaviness you are experiencing I am always amazed and haved loved the fact you can still make a funny! Y0u are so amazing and such an inspiration!

Sophie's Story by Elaine said...

We had errors in our report too...kind of frustrating. It's heartbreaking...to read the written words of the so-called experts. Surgery Conference letters, IFSPs or IEPS, notes from teachers or therapists...they all put a dagger in your heart. I am not the "cry in public" kind of person but the IFSP or IEP meetings seem to bring the tears out in me no matter how hard I try to fight them. Our next IEP meeting is September 25th...and I am SUPPOSE to be HAPPY to hear about all the progress she has made in the last year while hearing how DELAYED she still is. It's bittersweet. How is that for a rant in your blog comment box...sorry. What can I say though...your posts are filled with so much emotion oozing out of them that I can't help but get all wrapped up in them...in a good way. I love you, your family and a bit jealous (okay a lot jealous) that you can write so incredibly well and straight from the heart.

Adesta said...

Your last sentence made me chuckle D. As a mom who's oldest receives speech and occupational therapies and as such has to sit through endless meetings with the CPSE group at school, I detest when a report arrives and the info is incorrect. Just had Haylee evaluated too and the "professionals" with the county stated in their report that Haylee has two older siblings and was born October 10, 2009.??? Really? Didn't that tick in your head AT ALL when you typed that??? *sigh*

I swear, these "professionals" are just a crock...lmao

Sarah said...

My heart drops when I hear the mail too :( I think all IS families feel that when they know it could be any type of news about their child.

Mrs. M said...

Oooo...*breathe out*....for me it was the phone calls. Every time a certain prefix would come up I knew it was the hospital.
And my breath stops reading your post...except at the Cliche Abuser. Come on!!! Then my breath became fire (in your defense!)...and your post has given me the courage to go about with a post I have been writing in my head for a month. Thanks for the inspiration!
As for your lovely little man, saying, explaining what's going on with Trevy is always hard (I imagine) but to read it in b&w...must just take your breath away.
As always, breathe in & keep going.
Many hugs,

baby trevor's mommy said...

Holli...I KNOW. I thought that too. What if they declined Trevor because they had the wrong information?! It's like the secretaries need secretaries...and the secretaries should consist of parents! Ugh...

Connie...if I'm amazing on any level it definately is connected to the company I keep! You included!

Elaine...rant away hon! I like rant-fests. Makes me feel like it's okay to be human! ;) btw...you're a pretty good communicator yourself!

Adesta...oh good grief! Sometimes you just HAVE to laugh. Or go nuts!

Sarah...it never gets easier. Even when we know the truth because we live with the truth. It's just still hard on the heart.

Mrs. M...can't wait to read that post! xoxo


Colby said...


I SO know how you feel when you read about your child....Reading such reports for 24 years has been very "challenging"....Ha! What a joke! It has been devestating and heartbreaking and anger-provoking and....Just CRAP....

I always search and search for statements like "Patient appears to be well cared for"..."Patient reacts positively with mother"..."Mother appears to have an understanding of child's condition"...ANYTHING besides the laundry list of findings that are "abnormal" about my precious son...

But the professionals are trained that way, and you get as "used to it" as you can....(Another Ha!)

But the WONDERFUL thing is...Now Trevy has the opportunity to have many issues crossed off his list!!!!


baby trevor's mommy said...

Cyndi...the only doctor who ever complimented ME was European. It was when we were in Tanzania...and Bristel was sick. I can't remember if it was malaria or ear infection? I just remember the doctor complimenting my mothering. He noticed that I was comforting Bristel. And that she was finding security in my comfort. The point being he NOTICED. And complimented me! And I...of course...sobbed! lol I think we NEED to hear that we're doing a good job. Maybe it's a European thing? We could send our docs there for some lessons on whole family doctoring!


That was a nice memory.


Anonymous said...

When I was young, interviewing for jobs, invariably I'd get the dumb HR questions. When asked what my number one professional goal was, I would reply, "to maintain my sense of humor." Mostly, they didn't "get it," and I wasn't sure I wanted to work for an organization who didn't "get it." I guess being a certified public accountant, the "right" answer would have been, "I want to be the CFO of a five billion dollar company in five years." NOPE. If I can't maintain a sense of humor...and I don't mean falling down laughing humor...what's the point? A quiet subtlety is the key for me.

I read your blog, sometimes over and over, with a bit of a smile. Your sense of humor and sense of perspective in the face of Trevy's IS and all of its challenges is amazing. Your ability to express that in writing is quite admirable.

I'm certain you have helped many people similarly situated. I wish there was something I could contribute in the upcoming months before and after Trevy's surgery to be supportive of you and your family. But its difficult to do much from afar. I would be there to help cook, clean and take the kids out for ice cream if RI was around the block. (Darn, wish it was. RI is beautiful.)

Is there anything any of us can do that would be more supportive than commenting on your blog?

An aside, if Emmy's were given for best blog videos, Trevy, the remote control in hand and you chasing him saying, "I guess I shouldn't encourage this behavior," would win my vote, hands down (whatever that means.)

And a prescription from Dr. Accountant - rant as needed. Any outlet to vent is probably good for your health, mentally and physically.


Anonymous said...

Oh, we seizure moms are all the same....reading these things in print breaks your heart a little at a time. The day we changed Trevor's "diagnosis" to mentally retarded in his IEP was a big break. I cried....yep, "medically impaired" and "traumatic brain injury" sounded so much better. But if we wanted better services, "mentally retarded" was the way to go. Now, I know he's retarded, but I just don't use that word usually...oh well, these are the things that are in our lives that others just don't get. But I get it...and I appreciate your rants...they even make me chuckle.

Hugs from one Trevor's mom to another!

baby trevor's mommy said...

CB...your comment made me feel all warm n' fuzzy. And I needed a moment like that...so thank you! I am subtle humor girl myself. And in true confession form...I re-watch that video of Trevy with the remote OFTEN! Definately one of my favorite captures!

How to be supportive is such a tuffy. Although the cyber support I get here...among friends...is huge. Daily I deal with people that make me want to ram my head into a brick wall. Or theirs. ;) And it is truly...deeply...a gift to have other people out there connecting. With lil' ole me. And Trevy. But of course I wouldn't be Italian without admitting that I would LOVE meals in my freezer. And taking the kids to ice cream. How sweet the thoughtfulness...

For you in particular...being that you confessed being an accountant...I have some mulah questions that you may be able to field for me? Via email? Since you offered! ;)

Sheila...over and over again I have felt warmed that you found your way to Trevy's site. It's an extra connection that our boys share a name. But from this side...there is something profoundly comforting in knowing others have blazed the trail ahead... I am drawing comfort from knowing you're here with me! Thank you!


KC's Mama said...

Oh, I hope I'm not one of those cliche people. I do understand from the other end how that feels. I can't believe some of the stuff people have said to me over the years. My personal fav was "no one ever said life was supposed to be easy!" I was like, wow, thanks for that. Cuz I expected a walk in the park lol.
Regardless of anything else, I think you know that I love you and Trevy and wish so much that there was something else I could do besides leaving the occasional comment.
As always, praying for you.


baby trevor's mommy said...

Karen, hon...you are NOT among the cliche peeps! I get particularly annoyed at the people who don't read a lick of my blog...don't ask a question about how Trevy is...are oblivious to his seizures before their eyes...but just see his surface which I am all too aware is undeniably cute. And then hit me upside the head with the "just ask" crap. I think people who live through the guts of life...which includes things like catastrophic epilepsy...tend to have a more grounded world view. Sooo...all that to say...you are NOT a cliche chick! ;)


Liz said...

I love that you were once the Nice Girl in a call center.

I honestly always thought I could handle myself with poise and keep my cool on the phone until some recent insurance issues arose. Now I just let loose if I get someone who is less than sympathetic and helpful immediately. Until recently my hubby has handled all medical bills and insurance crap. Boy, they are going to be sorry when he deploys. As if watching my baby have seizures all day wasn't enough to make me crazy......

And I love Cyndi's comment, wanting to hear, "Patient appears to be well cared for"..."Patient reacts positively
with mother". I've been waiting for that too....Our Neuro once patted me on the back and said, "it's going to be okay". But nothing about how my mothering is helping.....that would be so nice.

And I love your rant.

Adesta said...

I'm so thankful for my girls' pediatrician and their nurses. They are always complimenting my husband and I on our parenting of the girls. As I've always told my kids, I don't care how you behave at home as long as you behave yourself properly in public.

I'll admit I feel a satisfaction that when out shopping and you hear some kid screaming and yelling and carrying on because their parent has denied them some snack or toy, my kids just take the no from me with ease and silent resentment. lol... Of course, once we are home it's another story, but go ahead and complain at home...you still aren't getting it.

brendalynn said...

okay so i may not understand how youre feeling and what youre going through. but i can say that i love you danielle. and everyone who lives in your house :P and since i dont see you anymore, we dont really get to talk much. but im still prayin for you guys. and i guess thats really all i can do. you were there for me through a bunch of crap. (even though im not really sure you realized how much at the time.)so you know im here, and constantly reading:] and youre an amazing mom danielle. dont forget it. <3