harder to shake

I had a call last week from a friend. And fellow IS mommy. I was pretty much freaking out! She's local...and a year further into crazy insane IS-ville than I. And had called to see how things were going.

Like I said...I've had better days...

Not recently...

...but still.

I said out loud for the first time...

...that in SO many ways Trevor's relapse was like the beginning of this nightmare reality...all over again.

Cause let's be real...after EIGHT months seizure free...you start to think that nagging nausea in your core. That feeling of the breath of the beast on your back. Well...you start to think maybe it's all just in your crazy head. And every now & then you even start allowing yourself to entertain the thought that your kid might be one. A miracle.


The world crashes on your head. And shatters your heart. Again. Only this time...it's real. Much more real than the first time. For us.

The first time our hearts were too numb with shock. And before we even really had time to digest just what IS was...and meant...Trevy was seizure free.

And when the beast caught up with us again...I let myself believe that we'd beat the odds again. Just as quickly.

But we haven't. And it sucks. The life right out.

I mean...how can I watch my child's innocent...beautiful...still baby-ish body ravaged. Day in. Day out. By uncontrollable...violent...knock him backwards...steal his development...seizures. And not lose some time off my life with each one??? Mommies' (nor daddies') hearts weren't Designed to handle that abuse.

A year ago...the girl in the mirror still looked kinda young. Cute. Happy.

But I'm noticing lately. I look SO old. With concealer proof circles. And hair that needed a new style ages ago. And sadness saturated eyes. Even when I'm not feeling particularly sad.

I don't know. The melancholy has been harder to shake lately.

I suppose I'm hoping releasing it into cyber space will accomplish something...

Then again...maybe I just need to suck it up. I mean...it's my own philosophy that everybody has a story...

And in that pesky core of me...I really do believe that everything happening was Known... Was Planned... Written before we ever lived a day of it... I still believe...


Happy Monday everybody!



JSmith5780 said...

It does suck. There are no other words for it. Whether it's a return of seizures, or a drastic regression. it's still a kick in the stomach each and every time! And even though it still hurts everytime, you find that you'll get back at it, and re-focus quicker.

Probaby not what you WANT to hear, but know that we are all hear with you. Expecially those that are living this life... WE GET IT!

hugs to you and the fam!

~Mama Skates~ said...

(((hugs))) & XXXkissesXXX!!!


blogzilly said...

I SO get where you are coming from...sorry you are feeling so bad, what else can we say really? Sucks in so many ways. But yeah...dump it all out on the net. That's what we are here for.

I looked at myself in the mirror a day or two ago and had a similar feeling...I have HUGE circles under my eyes and look like I've aged three years in a month.

Holli said...

Yep, the concealer just doesn't seem to be doing the trick on me anymore!

...And I've often wondered...what would be worse...going through this as we have with no seizure freedom...or having it for 8 months only to lose it?? I couldn't tell you...sometimes I think the latter.

I'm sharing a crummy day with you...Banzel seems to be a nightmare so far.

***Here's to releasing it!!!***


Carolyn M said...


Anonymous said...

You are normal, normal, normal...Keep telling yourself that...Over and over...If you felt any other way, I would worry about you...I am right there with you, girl! Thanks for being so honest with all of us...It helps US as well as you!!! (Colby's Mom)

Sophie's Story by Elaine said...

Okay...I must find myself a new group of friends because you all are depressing ;)

My brother-in-law asked me today how could reading the blogs that I do be therapeutic for me. And that is just it. Others do not understand what we are going through. Not that I want anyone else to suffer but to not feel alone...to have someone empathize with you...somehow keeps me from going off the deep end. Because even though you are having a bad day, you get through it...makes me believe that I can too.

Okay...I just scrolled down to type in the word verification and it is "forepla". I think my husband has somehow tapped into the system ;)

labonte4 said...

Yesssssssss! I love that you said that.."I believe"....and I love that song and listened to it on my Ipod many of times in the hospital.

Margo said...

Here's a hug for your heart!
Of course, it hurts, hurts, hurts. I would be more worried for you if it didn't.
I agree with everyone's comments too.
There's nothing to say other than we are all here for you...in one way or another.

KC's Mama said...

I hear ya girl! We thought we were in the clear with KC for quite a while, now we have an abnormal PET scan, abnormal MRI and abnormal EEG : ( The second time around sucks...cuz it does seem more real. My thoughts and prayers are with you always.