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Friday, May 25, 2012

wouldn't it be good

I have a new friend.
(you will want to be her friend too when you read that clever blog of hers)

Go ahead and check it out.  Read every post.  I'll wait.

See? Clever.

So today when I heard an old old song on my way to work and I immediately burst into tears, I tweeted her to see if it was ok if I attempted to do what she does so well.  She said it was-so here goes.

Remember Pretty In Pink? One of the classic 80's movies we have all seen so many times--it ranks way up there on my all time fave list.  I think I can recite each and every line.  And the soundtrack-oh the soundtrack.  How it takes me back. I remember even at that young age just being heartbroken for Duckie when we see him dejected and rejected in his room-mattress on the floor, spray painted walls. Remember the song that was playing?  It was Nik Kershaw's Wouldn't It Be Good covered by Danny Hutton Hitters. You can see/hear the original (and much better) version HERE.

This is the song I heard just as I passed through the tunnel on my way to work.  I heard the first few notes and turned it up.  Then turned it up again. Then the tears just started flying. 


I got it bad, you don't know how bad I got it
You got it easy, you don't know when you've got it good
It's getting harder, just keeping life and soul together
I'm sick of fighting, even though I know I should


The cold is biting
Through each and every nerve and fiber
My broken spirit is frozen to the core
I don't want to be here no more

Wouldn't it be good to be in your shoes
Even if it was for just one day
And wouldn't it be good
If we could wish ourselves away




And I think I was crying because I have been feeling this way recently.  I guess for the past 2 years or so really.  We have to fight for a lot, and too often I hear complaints from those that have really nothing to complain about.  And I think I was crying for feeling like that because it is just a shitty way to feel. And I think I was crying because as much as I want to say "i have it worse than you", I can also say " i have it way better than many". But even with that realization, I still have moments when I wish I was living someone elses life and not this one.  I hate even typing that.  I do.  But it is just the truth.  And as they say-the truth hurts-even ourselves sometimes.

I try so hard to push through life and keep a smile, but sometimes it seems my spirit has in fact been broken and is frozen to the core.  I look at people and literally think about how much easier their life must be...I know it does no good.  I know I have NO IDEA what these people deal with in their own lives-but when I see a mom with her three kids in a store I cant help but think "why isnt that me?" Actually my first thought is usually "who brings their kids to this store?" and then I realize she did it most likely because she CAN.






The heat is stifling
Burning me up from the inside
The sweat is coming through each and every pore

I don't want to be here no more
I don't want to be here no more
I don't want to be here no more






No, I don't want to disappear.  I just want a life free of Rett. I want the life I thought I would have.  The simple, normal regular life that many of our friends have. Again, I dont know what goes on behind closed doors.  I dont have a clue.  But it has to be better than having your normal daughter stolen from you by Rett syndrome. Watching her as she loses her skills? loses her words? having to do everything for your nearly 6 year old little girl? it breaks your heart every day.

And wouldn't it be good
If we could wish ourselves away



I know Im starting to sound like a petulant child screaming NO FAIR! I totally realize this.  I know that many many people could hear this same song and think they might want to live in my shoes for a day.  And it would be easier than their life.  And it would be fun and good and full of love and laughs.  It would.  My life is a wonderful life.  But Im always wondering, wishing, dreaming-would it be better if Avery didnt have rett syndrome?

Sure it would.  But I wouldn't know I had it so good.

 

12 comments:

lifeloveand.com said...

Beautiful, Honest, Gut Wrenching and so so Real. The beauty of what you've written Erica is that you have been truthful without being self pitying or morose. I had to laugh about the grocery store...I think that all the time 'Why do those people have their kids in here?' Well done my friend :) and thank you for the shameless promotion of my blog... :D

Erica said...

Thanks kori. You totally inspired and challenged me. I'm so glad it doesn't come across as self pity! Thank you!!

Janie Beaumont said...

Erica...... this is wonderful, i feel just the same & can so relate to everything you have written here. But too i am so grateful for my life, & i truly feel we have been blessed......
But also will continue to be blessed, yes we have it harder than many but our lives are SOoooo real......

I had the same idea this morning, when i went out for a really early run, i was listening to my tunes & the words just made me feel so liberated, most lyrics i hear i can relate to our life i think, i feel a 'lyrics blog post'
coming on too...............xxx

joetremblay.com said...

First of all, anything that involves the PiP soundtrack is automatically going to rule. I wore that tape out in 6th grade!

Second, I have also had the weird experience of hearing a song in a totally different way, given our current situation. It gets you right in the heart, doesn't it.

Third, thank you for a great post (and a great new blog to read!)

Kelly said...

YES, thank you for writing the words I have not been brave enough to write myself.

cw said...

Erica, thank you for sharing...I wrote something very similiar yesterday on Elizabeth's caringbridge website. Please know that you are not alone and that if we keep our hope alive our heart may start to heal and a treatment and ultimate cure will grace our girls and our families.

Petrina said...

Spot on...again! What a life we lead. Everyone takes so much for granted, no matter what type of life we are living. Some better? Some worse? I'm not sure. As rough and as unfair as it seems so much of the time, we are blessed. And those moms that bring their kids in those stores...well, they're just showin' off. Screw 'em. LOL! Love ya'!!!

cassandra said...

you have every f-ing right to feel that way.
Scream it out, if it makes you feel better.
I hate rett too, and I hate that your life and your families lives have been affected so horribly from it. YES it's NOT FAIR!
xoxox sandi

Sana Kashif said...

Hi erica, my name is sana and I have a 5 year old daughter with Rett. We live in Pakistan and I just want to tell you that this post is so poignant and so true to my life, you've written the words I feel. Even though we live continents apart, our feelings as Rett moms are universal, and its comforting to know each of us has one another to draw strength from.

Love and hugs to you and your daughter.

Colleen said...

Well said Erica. I am truly happy for you that this song came on and gave you some words to help with this thought. Kinda makes me think I need to just lay down and listen to some music, maybe that would help to untangle things for me. xx

Kim said...

beautiful post erica... so beautiful! i can't wait to meet you in new orleans!

sorel said...

Seriously could not have said it better myself and thank you! I hate that I know you because of Rett syndrome but I love that we can acknowledge and understand each others heartache and pain more than anyone and live off our joys!
I love you lady, thanks for the good cry... Mine was a little Dave Matthews last night on my run, can't tell you how nostalgic he can make me feel but how inspiring as well!
Xoxo
See you in New Orleans!