In September...

There will be a day when all you have is pictures and memories left. I hope those are enough for you. For your whole life...I'm lucky I will leave and take my greatest moments with me. But time will pass and you will create new memories and gather new pictures. I hope our pictures and memories won't fade to the background and become a blur to you.
You are the greatest love of my life and ill always have that love for you regardless if its here on earth or flying in the sky above. Great love is great love no matter where you are.
I'm lucky we have a love like ours. In September we will officially become one. A day I never thought would happen and it's happening because of you. Because of us.
that day ill be standing between the two most important men in my life. Each one holds a special place in my heart but from that moment forward I become a wife. Ill always be a daughter for all my life; but not everyone can be a wife.
In September I will be married to my best friend.

Heart and head

I haven't written in a while and I have no reason why other then I just have nothing to say. I feel distant to everything lately just feeling like there is a space between my heart and my head. I'm feeling off lately just off like no one understands me or my thoughts or even the thought I'm trying to convey in a conversation I feel like the world is spinning and I'm standing still.
I see so much around me people changing and growing up and drifting away but I'm still here waiting as life passes me by. I see moments where I'm invisible and I wonder will they notice when one day I'm not standing in the spot "they" left me in.
Life keeps moving on no matter how hard I try to slowdown. The harder I push the harder they pull.
I'll be okay I always am. If I have learned one thing; I'm alot stronger then I look.

Forgive me

I go back and forth about posting certain things on my blog. This is one of those posts I write then delete. It's really honest. I just hope it's not to much emotion.

Take me back to the days when everything we did we did together. You and I grew up perfectly. You the older brother and me the proud baby sister. I adored you from the beginning and you could care less. We grew up ;we became your typical brother and sister. Bickering laughing teasing. Riding bikes playing soccer together.
I realize now looking back things all changed when I was diagnosed with cf. maybe because you felt like you had a different sister who had new needs. I still looked up to you for strength and support more then ever after that news.
Now 15 years after being diagnosed I see how you went from my big brother to my protector not because you wanted to but because that's what you had to do. Still to this day that responsibility is thrown on you. I'm sorry for the stress that causes you. I'm sorry for the strain it puts on your relationships. It's not your burden to carry. I will make a better effort of not letting my health effect you and your life. You deserve to have that stress and burden lifted off of you and I'm sorry for all these years leaning on you when I should of been standing on my own two feet.
I hope you forgive me for everything and one day truly understand the love and admiration I have for you not only as a human being but most importantly my big brother .

Here's to tomorrow

Nobody knows what it's like to be around me at my moments when I'm weak. Very few see it maybe only 4 people. The weak moments where I lay in bed and my dad brings me apple juice in my favorite hello kitty glass with a straw.
Those moments I hate feeling so weak and it would take just one thing to set me off and I'd be an emotional disaster. But that's the true and ugly part of cf that you don't see. Only few really know the whole story on cf, what it does to you and the ones you love the most. To see the agony in Aaron's face as he gives me my most treasured gift...a hand hug. I know he's worried. I know he is concerned and his eyes give it away. My dearest mother lays in bed with me while I'm hooked to ivs and feeding tubes. Just her company is enough to make me feel better. I'm just thankful we have that relationship and more thankful we aren't in the hospital.

It's easy at times to see things and see how bleak the outcome is. Today was one of those days for me. But im aloud to have those days. It's normal feeling and emotions. I just have to make tomorrow better then yesterday. And if I do that I have no where else to go but up.

So here's to tomorrow. May it be less bumpy...more smiles and better spirits. But if its not then that's fine I'll wait and have my good day...just you wait and see

Dear...

Dear Uncle Jody

Last night Dad and I were talking about you and how you were when dad was growing up. You were good to him so thank you for that. I always think of you and what it would of been like to have you around. I imagine like my Dad I would love you unconditionally. You would be silly with me when I was younger and as I got older you would be like another Dad to me.

Daddy says Aaron looks like you. I can see it too now after he said something. You would of loved Aaron. Everyone does. I think you and him would have a special bond. He's a lot like you.

It's silly but I love you even though I don't know you. I miss you but I have never seen you.

Aunt Dottie tells me about how silly and hyper you were growing up and how you taught her to always leave the people you love with a hug and a "I love you". I do that too.

Uncle Jody, you should see Joe your son. He's a great man. Great father. You would be proud. He came to our lives close to 8 years ago. I feel deep in my heart you had a part in bringing him close to us. I think he needed us but we really needed him too. I love Joe like my brother. A good man who is fun and silly I really think you two are a lot alike. At least in my mind. Thank you for everything you left behind the memories and the lessons.

I would hope their is a heaven just for the simple fact someday you and I can meet and I can finally see you. You are missed and you are loved but just in case you forgot I figured it wouldn't hurt to tell you

Goodnight sleep tight

Smile and nod

Sometimes the task if telling others about your disease is tiring. The questions are easy to answer but when they start drifting into my so and so has asthma or I.b.s. and it's sooo hard for my so and so. I just have to smile and nod because the other part of me wants to scream "did you not listen to what I just said" but that would use more effort then it's probably worth. I find majority are interested to know your struggles and issues with health but only is you agree their health issue is just as important as yours.

Again just smile and nod in agreement when in your head your saying No. Nope. No way. Not going to happen!

Every disease is awful let me make that perfectly clear. The " invisible" diseases definitely got the short end of the stick when they were giving out awareness importance.

I'm constantly saying I wish people understand I might look good; hair make up done nice clothes I still care about my appearance but it isn't the only way to judge someone. I can look so normal but struggle to get outta bed or, even a shower sometimes just isn't happening. Of course those people aren't their for those moments but those are real me. Coughing till I throw up. Mucus everywhere tissues covered in snot. Hair exactly as it pleases messy and wild...and I don't look so healthy without my coverup and blush. But it's me.

All I can be is me. Somedays you get the "healthy" looking Jess but if your one of the few you see just normal ol Jess

To all my cysters who are not feeling good and are on the "juice" hope things turn around quick. oxox

Happy birthday!!!

Happy birthday Megan

Well I imagine your party is amazing. Who made your birthday cake? Did they pull ALL those candles on the cake? Lol I bet you picked plates with lots of pink. Well because pink is so you! I don't know what presents you will get in heaven...shoot you might not need presents if heaven is as great as they say. I wish for a moment I could see you in heaven and see what you see and feel what you feel.

Your mom misses you so very much it's obvious. I hope you are with her always she needs you. I couldn't imagine the feeling that come with loosing your daughter and your the only person who could comfort her.

I dreamt of you not to long ago...you with pink hair dancing and having fun. It made me happy.

I hope I find the strength you possessed cause you are one tough cookie. You never seemed to stop fighting and I don't know how you did it. I'm tired Megan and I haven't done/experience 1/2 the things you went through with your CF. I could use your uplifting view that always made me feel better about the situation. Megan my heart hurts for your family and friends mourning the loss of anyone is hard but when you loose someone like you, who truly was special and kind and beautiful inside and out is almost impossible to heal. But we love you and know what you would want is for us to find comfort in your Lord Jesus Christ.
Someday Megan just for you.

My normal life

I'm full of mucus. It comes out in amounts that are frightening and it never seems to happen at the right time usually in the middle of a sentence I get that cough with projectile mucus that will take no mercy on your clothes, car or purse my mucus has no boundaries. It comes and attacks poor innocent people. It's like it feels the presence of fearful people and attacks. If it wasn't enough to spew mucus like a monster the cough is a whole other story. I make elderly people run in the opposite direction. The stares are my personal favorite. Nothing feels better then the over the shoulder stare as I'm grasping for breathe. Humanity at its best everyone. It never gets old. But fear not my friends I find it sad that stares and forceful smiles are what I attract but in reality all I'm trying to do is live my life as normal as possible and sadly all of the above is normal to me. Goodnight all xoxox

Gibber jabber and mourning

I always talk about the moments when my disease takes a back seat and for an hour or maybe two I feel normal. Those hours or even moments keep me sane.

Sometimes I feel that I come off weak. But really I'm just real. I'm honest with you about my emotions and the hard things I struggle with. I'm real because no matter what happens this disease is real and no matter how weak I get at times I thankfully always find my feet and get back to standing my ground.

Having a bad weekend doesn't effect just me but everyone. Waiting on pins and needles to see if today was better then yesterday but we hope not worse then tomorrow. I hate that part but it's real. The emotions are real the fear is real. It all is real.

Sometimes I find myself dazing off into thought about the simplicity of what life would be like to be CF free. I wonder tho if I knew what it was like would I miss it more?

Let me stop on my ramblings for a moment and let me say my peace about a tragedy that has accrued in my home town. We lost an amazing man 27 years old and he passed away suddenly of a ruptured aorta. His name was Jeremy and even tho him and I were never close it breaks my heart to see a family mourning such a huge loss. The community has come together and wrapped everyone in love and it's beautiful. So beautiful it makes me proud. I can't speak on a religious note saying god needed him or whatever you say. I just know its sad to see someone as loved as Jeremy to pass but it really reminds us of how important it is to love the ones in your life and tell them. I can't speak on behalf of Jeremy but I bet he's proud of how everyone has come together in this time. It says a lot about Jeremy and the legacy and love he leaves behind.


"Many a smiling face hides a mourning heart; but grief alone teaches us what we are." -Friedrich Von Schiller

Peace love and hello kitty.
Xoxox

A little about me you might not know

I always tell you about the things I struggle with. Let me tell you about other things in my life.

I'm a really good daughter. At least in my opinion. I'm a decent sister. A pretty handy niece and a good cousin. I'm an okay friend. It depends on what day you catch me on. I have never had good luck with friendships really.

I'm a really great shopper. I'm great at clearing an isle especially if elderly people are hovering to long. I just cough a couple times then bam they disappear. Same with Moms with small kids.

I'm an amazing car dancer/DJ.
I can get groovy in the car like no ones business and I hate to say it but I have amazing taste in music. My music ranges from tupac to hall and oats. Eminem to Clapton. I'm hard core like that.

I love to get my craft on. I have learned from my fiance's mom how to quilt so I'm trying my luck at that.

I like to scrapbook I have 7 books starting from my first date with Matthew. We are going on 7 years it's crazy to see how much we have grown.

A lot of things come easy to me. Some things more then others. I have really enjoyed my role as an "aunt" they aren't my niece and nephew they're actually my cousins but I like Aunt better. Dodi to be exact. I love being Dodi (Hebrew for Aunt) it's an amazing feeling to love another human being in that way. It's unexplainable. But it's amazing

I know I tend to blog at my hardest moments and I don't want you to think that's all Im it's actually the complete opposite.

Peace love and hello kitty to all! Xoxox

"Without fear and illness, I could never have accomplished all I have." -Edvard Munch

I don't know that this is true for everyone but tonight it speaks to me. I speak of the moments where I'm weak and lost but in reality that's the fear taking over my hope. It happens and no matter how hard we try not to be scared of something there is nothing we can do about our fears. Either they consume us or we defeat them and do things despise the fear.

We deserve a cure

This disease has no famous face standing in front of us saying look at me I'm important cure cf for me. We have real faces of real people who most aren't internationally known but does that make them less deserving of a cure? They are loved and they are brothers and sisters wives and husbands moms and dad daughters and sons. Are these people less deserving? No we are more deserving. I have times in my weakest moments after sobbing for hours I look at my self in the mirror and I see weakness where there once was strength. I'm supposed to be a warrior and all I see Is this weakness the disease that has made me drop to my knees begging for an ounce of hope.

Where there is hope there is rainbow of possibilities. I dream of those possibilities being a reality and I know with the support and fundraising were closer then we have ever been...look at the evidence of your charitable donations making leaps and bounds for the disease that once was a bleak death sentence. Now we have possibilities and hope. Together we really are working hard to save so many lives.

So we might not have a celebrity standing in this fight but we have each other. Our community is a beautiful one and we support each other. It's a beautiful thing. I have seen nothing like it.

Peace love & hello kitty

Just my update

I'm sick again but I think this time its much worse. I'm physically ill but I'm emotionally ill. I spent all day at kaiser Thursday and even though I knew what the day was going to be like. I didn't. I didn't expect it to be that bad. I'm just tired of doing the same thing over and over again. Iv antibiotic after antibiotic to feel better for a little then back to being sick. I just wish I could have a break cause as we all know if it's not one thing it's another.

I had an appointment with audiology and ENT. Just as I had suspected my hearing has gotten worse but nothing to be concerned about right at this min. It's just hearing

ENT my least favorite appointment ever was as I expected. Painful. I had sinus surgery may of 2011 and it was supposed to make a difference but no it didn't. I'll admit I should of been better about the rinses and I paid the price. I now have polyps in my right nose hole and that's new completely. I just want to scream but I can't I cannot physically bring myself to scream. But I cried and I still cry. I'm struggling I have been struggling and in just waiting to catch my breath and find some solid ground to stand on. And If that wasn't enough of a shitty day it ended with a massive blood coughing fit coughing up the most blood I have ever coughed. The feeling of the blood coming through your lungs is a feeling of torture and all you want to do is breathe but when you breathe you cough and when you cough you get more blood.

Nobody wins in that situation.

Make it more of a hard hit I knew I was sick I just didn't know I was this sick. I wish everyone knew how good I'am about hiding how I feel cause even if I told you...you would believe or understand. No body knows

So this is the catch up on me and my health. I'm hoping I catch a lucky break but as always I'm not holding my breath.
Only high light was riding the merry go round at Griffith park. Matthew was kind enough to ride with me for safety reasons of course ;)

Dogs gone wild

Bossy our 10 month old mastiff is a rebel. He destroys every rug we put on the floor...he hates rugs and sometimes when we come home we will find he moved the rug from the kitchen to the doggie door, possibly setting it free. He loves to eat dog beds but not the ones he likes but the ones the bullies like. Dish towels those are rare these days. He will grab them from the counter and run like a mad man to the doggie door and no matter how loud you yell he keeps running

He's my treatment buddy even though he takes up more of the couch then I do. But it's nice to have his company and when I lay on the floor to do my vest that's when he thinks he needs to share the pillow.

Even though they have 4 legs all my dogs are my favorites they are good company and my dearest friends. Plus they usually agree with everything I say. Haha

Betsy is the dog in the round bed and the dog that's laying on the dog bed in the middle of chaos. Bently is my ohandsome boy laying on my bed and that leaves bosco aka bossy.

Wish us luck and let's hope he doesn't eat the furniture next. Or the computer

Is this real?

That feeling of being uneasy is starting to take over me. The point where you think you're sick but maybe it's not that bad and before you know it you have convinced yourself you don't need to go to that appointment.

Something is off. I feel it in my lungs. I know my lungs they are going to be the death of me (haha) my right lung obviously hates me and is punishing me. Between the chest pain and the coughing up blood I really feel like there is no hope for us ever becoming friends again.

My sinus' they are the wild child every parent prays they don't get. But no not me I got the rebellious sinus' that we're sent hear to destroy me.

I have moments where I just need to know I'm going to be okay. The uncertainty of cf is awful. The good days and bad days are hard. to feel good one day and like crap the next is like having someone blow out your candles. There is nothing left. Some days I feel so good that I believe this (cf) is a bad dream and I'm waiting to be woken up...but like always something will happen where I get slapped in the face and I realize this is real so very real and the thought of it being a dream is unreal to me.

Sometimes life feels unreal.

Fighter

Sometimes I have so many thoughts they jumble together and I scramble to seperate them.

I realize now in this moment more then I ever have how so much depends on my health. The one thing I cannot control.

I realize no matter how many days you stay with me you will never truely know CF and what it does to my physical and emotional being. The things that I think of and that happen are unexplainable to you and no matter how hard I try you will never know. & even though it's not your fault I will resent you at some point for your ability to stay healthy or your stamina and even for the way you just don't care the way I care. You will never have the black cloud over your head the stress of a bad cough and a loss of a fellow comrade. You will never know what it's like to have a holiday approach abd not know of it would be your last.

I see so many moments where life is bleak and I think to myself why? Why me? Why my family?Why does it have to be so long and painful. Why do I have to look so healthy but feel so awful. Why continue another day?

I'm awake thinking these thoughts and I feel such hate twoards these thoughts but they still come one after the other like a train of misfortune.

Iam weak today. My thoughts are weak my spirits are weak. I have no desire to awake to another day like today. Im weak today but tomorrow I'll be stronger. Im a fighter..Always what i have been and all i know how to do.

10 years of advice for me

A letter to myself when I was 15

Remember when you thought 25 would never happen ? It did and it's not to awful but take it from me that boy you think you love isn't for you. You will learn there are many forms of love and this isn't true love forever and always; that happens just not now.

Friends aren't forever you will learn this very well more then once. People come and go and as hard as it is to watch them walk away it's not your decision. Being a friend isn't the easiest part but you make it through and find you're friends in the most important people. Your family.

Words. you become very well at times with words and other times you speak when you should have been quiet. Remember words can't be taken back once they are said they are forever out there ;words hurt. You know this and to this day at 25 it's something you will be working on

Your family will shift...people will become more involved and others will drift into the back ground and no matter what you do you can't get that back. Enjoy it while you can get those hugs in and the I love yous in because time isn't promised to anyone and it's hard to see people leave.

Never regret the relationships you had weather it's friends or boyfriends they lead you to a good spot. The memories are what keeps you strong on the bad days. And yes you will have bad days. Some are pretty bad but no matter what happens on those days you make it through i promise.

You will go through a stage where you want to be normal. But you will learn trying to be normal is only making you realize how abnormal you really are. Your health isn't what defines you but it's a huge part of who you are as a woman. Without your health you are nothing

Someday you will meet a boy who steals you're heart and you fall madly in love. Young love at its best. He's your best friend and even though there are some rough sports he has your heart and will forever be the love of your life. Forever and a day

Really though have fun be smart and always follow your gut. People are sometimes good. You learn to love the people who are in your life and you miss the ones like hell who left.

I'll end with some useless knowledge. It is what it is. Exactly that. The things in your life that happen are just moments that lead you to a beautiful life with love and laughing and really is beautiful. Hold on cause your in for a ride

Only the good die young

I wrote this on the one year anniversary of my friends passing. I just am now posting it.

After being diagnosed with Cf after I was 10 I never imagined I'd live to be 25. I thought I would graduate high school have a couple years and move along. As morbid as that sounds I was okay with that. I knew the future is never promised to anyone and why would I be the lucky one? After I turned 22 I realized someone and I were not on the same plan. And at 25 I'm realizing I think I might be in this for the long haul. But you don't know my burden of this disease physically and emotionally . To see things and your mind goes to the worse...those thoughts are my burden but in reality it's exactly that. Real. I remember sitting one day with my mom looking at cars and I always felt like when I left and moved on my car would be something to treasure and I could see my parents holding tight to this one thing that was truely and really mine. And I turned to my mom and said..."when I die make sure so and so gets my jewelry armoire (I'm not telling you who so they can be Suprised) see that was morbid but I laughed as I wrote it like when I die I want my things auctioned off like guess what you got!!!!! Your the proud winner of (fill in the blank) and the people I don't like will get something stupid like a shoe. Just a single shoe. One. Haha seriously I'm on a good one tonight. But I'll leave on a more serious note

Dear Megan
1 year! How is that possible. I miss you and I wish you were here to talk to me sometimes I think your the only one who got my humor. I wish I knew what heaven was like. I kinda wish you could put a good word in for me and maybe I'll meet up with you. I mean If you like it it couldn't be that bad. Know you are loved and missed I smile every time a lady gaga song comes on but part of my heart breaks at that same moment. You were gone to soon...it's like the song says only the good die young. Miss you xoxox Jess

Im asking for your help

when I was younger I always had high hopes of the things I would do. My biggest one when I was first diagnosed with Cf I was going to cure cf. I thought at 10 years old that was something I could accomplish. I had things worked out so well In my head how I would help. What I would do to raise awareness for cf. at 10 I had hopes and ambitions that to this day I still have not found a mountain and bigger to climb. That is my Everest. Every year it's always the same me asking you to donate to Cystic Fibrosis Foundation. To take you're hard earned money and give it to a charity that means do much to me. 

Every year for the last 15 years I have been asking for you support. This year I'm not asking for me but for the others effected by this disease please take a min and read this

 http://www.cff.org/Great_Strides/JessicaBenson465

I hope my words will move you to donate to an amazing charity.

Dearest Jaxson

I wrote this about 2 months before Jax made is appearance....

Dearest Jaxson

Your so close to making your big appearance in our little family. We have waited so long for you...in reality years we have longed to have little feet running through our home and through our hearts. There is no doubt you will be loved to unreasonable amounts. Your life will be surrounded by love. Everything you do you will have love. Every step and word school play and graduation every game and practice you will have a love that carries you everywhere you will go. You will be the sunshine in so many people's lives that your going to feel overwhelmed with the love and support. I look forward to the day we meet and you capture my eyes and steal my heart. No one will ever be loved like you Jax , that's a promise I'll fa fill everyday I'm breathing. With love Jaxson Christpher....until I hold you in my arms I will not know love.

With love to the moon and back
Auntie Jess

I think it's safe to say I have found l love. He is perfect in everyway and already has my heart.