on occasion

I've...on occasion...struggled with resentment. Or at least exasperation. It mostly hits me when I've found myself wishing a particular person got what I'm dealing with. The fears. The worries. The sadness. The guilt. Even the joys...that I take for granted less often now.

People just don't seem to understand that Trevy is more than meets the eye. More than cute deep. If more than a cursory glance is given...it's obvious. And I've found myself fuming more than once in moments of frustration.

Which is precisely why this has been haunting me for days...


Sophie's Story by Elaine said...

I know how you feel. I had a friend over the other day who has 2 typical developing children and she said to me "Sophie can go to a regular preschool". Are you kidding me? You don't think she needs any therapy?

Sophie looks normal. And she acts normal enough. She is just delayed.

I am trying to come to terms with this. Happy that others don't see her delays. Happy that it isn't THAT obvious. But I still fume inside. Especially when it is a friend that knows what I am going through. I wished that she could live me life for just one day. Then I too read Ava's blog...now I feel a bit guilty.

labonte4 said...

I guess this topic really gets the best of us all. I've finally come to the conclusion that the only person that is affected by this is ME, and MY family. I'm the one P.O'ed, I'm the one resentful, I'm the one in a bad mood.

I'm a TERRIBLE offender of getting in the "nobody understands, I hate everyone" mode. It starts off as angry, and ends up as sad. Very, Very sad, because I'm isolating my friends....my family....and people who DO genuinely care.

So, from now on, when I catch myself, I'm going to try and nix it. Just let it roll off my shoulders and keep my peace and faithfullness.

This.....will not be easy. But I've called myself out on it (actually, as stranger called me out on it *LOL*)

Mmmmaaahvelous said...

That really hits home. I too struggle with resentment and gulit and all the gamut of emotions. It's natural. It's how we act on these emotions that makes a difference...I guess. But this dad, wow...that's incredible insight. Thank you so much for sharing their story. And your feelings too. It's okay to angry sometimes. Sometimes that's what gives me the energy to get up and go still, rather than lying down and melting in a puddle of tears...as I'm certainly made of brown sugar like the witch in the Wizard of Oz and would melt. Just like you....sweet and able to melt!:) Even on the days when resentment and all that jazz pushes itself to the forefront...still sweet and meltable!:)

KC's Mama said...

I totally get what you are saying. Whenever KC is having rough times, I struggle with the lack of understanding from everyone except those who live it. It's got to be one of the most lonely feelings... I get through it with the knowledge that people do their best, and I don't REALLY wish that people understood because that would mean that they had to live it. But it's still really really hard.

Monica, James, Connor McGuire said...

IS is definitely a lonely world. i agree especially with people not getting it when they "appear normal" on the surface. Family members are sometimes the worst at not getting it. My MIL thought connor would be talking anyday now. I kind of snapped one day and basically told her we didn't know if he would ever be able to talk, that communication is a big struggle for kids with IS. she said that she didn't know. Duh!! What rock are you hiding under...come and join us in this world...it's called the internet...look some stuff up!!! It's so frustrating. My Mom for the most part gets it, but I was so glad that she came to Connor's appt this past week with us, and got to hear our reality. I really wouldn't ever wish this nightmare on anyone, but I do find myself giving angry glares to people in public with their perfect little children. IS has made me bitter & I don't like it. When I was working on peds/picu ...I had so much respect for families of children with special need. They were my heros. Why can't I give myself the same level of respect??? That's why I'm so glad I've found all of you blogger mommies. Sometimes I get on here & find more understanding than any other time in my life..so thanks for being here!!!

Ian Marrey said...

Must admit to being a bit 'torn' on this one. I wouldn't wish this on any kid let alone their family but nothing gets to me more than optimism. Particularly the optimism based on nothing in particular. IS is a form of epilepsy but I refuse to use the word epilepsy to describe it because too many people see epilepsy as treatable/curable. I don't like the word spasms because it sounds too innocent - like back pain caused by spasms.

But.......what meets the eye is also true, also a part of who our kids are - and if people see joy, happiness, mischief, pleasure and miss the stuff underneath then I can live with that - if they see these things they must be there.

Ian (blogger daddy)

baby trevor's mommy said...

To the girls...in a weird only-in-cyber-space way you all meet that need I have for someone to understand!

Ian...it's so refreshing to get the daddio's take on this topic. And you're right...if Trevy is reflecting happy & mischief & the rest...then it is there. And I'm so happy that it is!