Thursday, April 17, 2008

CANCER KIDS ...MYLIFE...

Good morning ladies(hmmm, don't think i have any man reading on here, if so please let me know!!)...
Some of you have been waiting to hear my side of THE trip...But , it wont be for today...I will make my own illustrated version , with lots of "interesting" pictures (wonder how long it will take Michelle , Dawn and Manic to email me wanting to proof read before posting my new post???)
We blog a lot about funny things our kids do, they just ARE funny, and if we didnt see the humor in it then we would be locked up in a padded room somewhere.(And Dawn wouldn't have a blog!) ...But today , I will be down to earth and maybe some of you will see this as depressing, but it is someone's reality... Sooooooooo , this is a fair warning, if you are already depressed, if you take drugs for depression and you are doing ok , or if you plain don't care about someone else's cruel reality , then move on to the next blog, this post is NOT for you...
That being say, if you keep on reading I need you to sign a disclamer: I will NOT sue Mimi as I chose to read this post without being forced to do so. All negative implications to my life , whatsoever, are my and only my responsabilities... Oh and Kendra, i believe you are strong enough to read this , but it is up to you...

As most of you know , I lost my 4 year old to brain cancer in january. 4 years old. Does that even sound real to you ? Julian didnt even pass the one year mark from diagnosis. Julian spent his last Christmas paralysed from the neck down ,laying in my bed(but with a smile on his face!) , Julian only wanted to grow up to be 5 and go to kindergarden , Julian did NOT want to die because he wouldnt be able to see or hear me in Heaven, Julian wanted to just "stay down here and ride his bike" , Julian , within a couple of weeks went from being totally mobile to losing the use of his left eye, then his legs, then his arms, Julian couldn't even give me a"real hug", Julian couldn't be held for comfort because cancer had taken his spine over and it hurt too much, but Julian also always smiled about something... My little sunshine. He was brave, and even though i didnt explain to him what exactly was happening, he had to have known... How scary for a 4 year old... When he slipped into a coma (tumors had taken over all of his brain) his only reactions were to say no and shake his head, he looked scared. It broke my heart every single time. All I could do was lie to him " It will be ok ,Pun'kin!" How could it be ok, when he was going to be taken away from his Mama? ( and hearing comments that he IS in a better place just dont cut it for me...) . Anyways, it has been three months minus 2 days...The pain will never ease, i just will learn to live with and around it... I still smile and laugh out loud everyday, I just owe it to him...
Now tomorrow is our Relay for Life. I am excited and scared, we had Julian with us last year , he stayed up almost all night!! I carried him around for the survivors lap, what now? my arms will be empty...


But this year , I will walk not just in Ju's Memory, but for all my "other" cancer kids...Praying for them , praying for everyone working together for a cure , praying for the moms ( and dads) who like me ache for their child to hold, praying for all of the cancer moms and dads out there,spending each day wondering if cancer is being defeated in their child's body as they see the poison (chemo) flowing into their babie just as I had to see and do only a few months ago...




I will walk for our friend Kendra and pray for more strength and healing .
I will walk for all these kiddos and more:
Bailey,Coleman, Alex, John Eric, Mikayla, Cody,Cameron, CJ,Cole, Derek,Haley Hart,Isaac, Jacob K.,My man Quinn,JP,Kennedy G ,Kennedy (PW),Lucas, Luke,Maddy,Madi,MT,Nicholas, Noah,Peyton O., Payton C. ,Sadie, Zak, Zeb, Jaxon, And so many more, TOO MUCH!!!

Bay

Coleman

JohnEric

Kennedy
Then my heart will be with my beautiful Haley . My heart is ALWAYS with you baby...
Haley is 18 , battling neuroblastoma. Diagnosed at 5 ,went thru treatment, NED (no evidence of disease) at 8 , relapsed at 17. Haley goes to college to be a pediatric oncologist .She has chemo every monday.


Chemo days
Haley shares her birthday with Julian and so much more. I believe God sent her to me after I lost Julian to help me thru the hard times . But it seems we both need this. Haley is beautiful , inside and out. She has been robbed of a lot of friends by this horror. She knows way too much about cancer and meds and prognosis and terrible endings... But she has a strength that amazes me , she is the goofiest ever, always making faces to make me laugh(it works) , talking to the little ones on the webcam and make them crack their heads off . Haley never feels sorry for herself and does not like when people look at her with pity...Keep your chin up Kiddo... When we have a down moment and I ask her what she is thinking, she looks at me straight into my heart and just tells me she wishes she could make it better for me...

Like that! I just melt!


I can't even begin to explain the connection because i dont think anyone would understand , or rather would think i am nuts...I guess I dont have to explain. Haley, I love you...
This is me last night at the computer while talking to Haley...




Haley will be having routine scans tomorrow.PWEEEESE PWAY HARD !!!

Hope you guys have a good day ...
And our new moto is "HIGH FIVE...YOU'RE ALIVE" (by Haley) ...Right along with " CANCER SUCKS!!!"
Peace out!!!
Mimi
(If you want to donate, see link on side of the page)

22 comments:

Mabunny said...

Hi MiMi! I've followed yours and Juju's sotry through Dawnand Michelle. I washappy you got to meet them in Chicago.
Julien shared my birthday too. When he passed and I saw his birthday it threw me for a mini loop at first. I don't consdier myselvf very special, but I do now to have shared my birthday with such a wonderful little guy...

I live in Dallas. Not too far from you. Withallour busy scehdules I hope to get to meet you sometime.

Hope you comevisit my blogtoosometime. I havea contest going on right now for your funniest wedding story, tocelebrate my 100th post. If you do check it outanddecide toenter it is titled Happy 100thtome..
Hope to hear from you soon

♥Lisa♥ said...

His smile is what got me Mimi!!
I cant wait to hear all about the walk.

Pamela said...

Hi Mimi,
Will dontate to the Australian Relay for Life held on 28th April in Ju's memory.
With Love and prayers.

The Journey Begins Here said...

I know Relay does not put a lot towards pediatric cancer. People tell me that all the time when I tell them my passion for Relay. For us, it's about community. It's about educating people and then from there they can pick the more specific foundations.

I love the silly blogs but I love your seriousness. Maybe if just one more person gets well it could be that one person that brings us closer to the cure.

We will honor Julian at our Relay. There will be a lot for me to run my mouth about in the next 2 months so look out, girl.

Love you, Theresa

Don said...

No men, huh?
Mimi, you should know better! :-)
Love and hope always,
Don

e said...

awwwww mimi

i don't know how i got hooked up with you..prob thru renee and kennedy, but i'm so glad i did. you are a tower of strength in Faith and show all the good that women can be!

plus...i think God brings us together for purpose, and shortly after we lost julian, our friend amy's little ben was diagnosed with a brain tumor of such magnitude...they are only able to participate in clinicals.

amy has already lost a little girl with ds (like kennedy and my molly) to a heart defect, that could have been diffused with a transplant, but transplants weren't available to kids with ds.

*sigh*

it's seems so totally unfair, this unfair beast, that she should have to face losing TWO! especially one like little ben, who came to a broken hearted woman from an orphange in asia.


anyway...i try to keep you in mind when talking with her (UCLA) cp benthebrave, and pray that one day i can summon up the strength and grace that you exemplify, to help my friend walk this path

thank you! BLESS YOU and hang in there...you are so needed!


e & molly kate

I am Heather...creator of all things crafty! said...

Mimi, thank you for an honest account of dealing with the loss of Juju. It didn't make me sad, it made YOUR PAIN REAL. Not that it wasn't before, but your explanation somehow put a "face" on it like never before for me. I am so proud of you for doing the Relay for Life. I still think that Juju will be with you. Especially if you wear your necklace. (wink) I love you gal, we need to meet. I have some great friends whose 7 year old is 4 years out in remission from Neuroblastoma so I remember the struggles they had with Victoria and your friend Haley seems like she's a Godsend for you. In Christ, Heather

LaskiGal said...

I followed Julian's story on carepages . . . found out through Manic and Michelle near the end of last year. I couldn't tear myself away.

"( and hearing comments that he IS in a better place just dont cut it for me...)" No kidding . . . There simply are NO words.

I'm one of those strangers whose heart and soul was forever touched by your story. As a very new mom, I can't imagine. And I am certain that neither could you.

I admire you so much, words can't express.

I'll be donating . . . and praying for all those little ones.

Shellie said...

Will keep the kids (and you)in my prayers and hope that tomorrow things go well for you all!

nomi said...

Thank-you, once again, for keeping it real. I'm still praying, every day. And have now added new people to my prayer list, thanks to you! Good luck tomorrow. (((hugs)))

My boys are Army Brats said...

Hey Mimi!

I just wanted to let you know that last year I participated as a team captain in our counties RFL and learned about Julian over the summer and followed along day by day.

This year I was asked to Co-chair RFL of our county and at first said no because the responsibility was HUGE but after more thought I decided I could do it. So this year I'm working my tail off to make our RFL great with Julian and the other cancer kiddo's I've been keeping up on through your carepage referrals!

Have a great Relay!

Michelle Best

dedekae said...

Mimi,

I will be honoring JuJu at our RFL on May 9 as well as Coleman and Haley. I just wanted you know that I do think of you and yours and pray daily. I know the pain won't go away, you just learn to live with it. Just know you are a light in the dark for a lot of people. Can't wait to see pictures of your RFL.

I am Heather...creator of all things crafty! said...

Thinking and praying for you today. Go Mimi, best of luck at your RFL today. Heather

Laura said...

Mimi, your post moved me as does your cp each time you post and I read it. I know you are at the Relay now and I'm praying for you!!!! I have learned a lot for you! Lots of love coming your way, Laura

I am Heather...creator of all things crafty! said...

Excited to hear how RFL went. Heather

My Flock Rocks! said...

I tried to donate to the RFL but I don't think it went through online. We had made a donation in Julian's name for the Bradley University's RFL. If it isn't too late, I will try again online :)

I am going to wear my T-shirt today and have my hubby take a picture so I can send it to you!
Hugs!
Sue

srogers said...

I did not know you had this separate blog. I have been thinking of you all day...no coincidence. I hope everything went well at the relay. Still going maybe.
Like Haley, bless her heart, I wish I could make it better for you. I miss your little man. Love and FROG,
me

Manic Mom said...

You know, you give me goosebumps!

HUGS HUGS HUGS ALL THE WAY TO YOU! Just spending a lot of my time thinking about you, Julian, Haley, Coleman, Kendra, my son's friend Michael. You didn't know this but my mom-in-law is starting chemo again tomorrow.

So many lives touched by this disease.

xoxoxoxoxoxo Steph

Laurie said...

What "real" stuff. I love how you show us your heart towards these kids and their families. The world needs more of that!

Love you,
Laurie

Mommy to those Special Ks said...

Thanks for including Kennedy! :) Love you.

snowdoggy124 said...

Hey Mimi, Don't worry I didn't read your post....I'm a man, so I just looked at the pictures lol! But thanx for thinking of Alex. Love to read... ahhh no, look at your stuff!
Greg

cancersucks said...

You are an inspiration to me...cancer sucks is my blog.