Salt in our blood

Where your at can you feel pain? Can you see the hurt that's left in this world? Do you see things I don't?

At this time I'm at a loss of words that usually have little to no comfort for my wondering mind. I'm stuck between a rock and a hard place. What do I do? I wish their was a guide book for grief but sadly there is nothing to mend this broken heart.

I see a lot of others who are close to other cfers and honestly I'm doubting my strength and determination to bond with these cysters and fibros. Nothing can prepare us for the loss of our brothers and sisters in war.

We all fight this disease we are a group of determined soldiers who are prepared to fight for the end in many ways we were born to fight it comes with the territory of cf...the salt in our blood is a true tell of the strength we have. Nonsense to most but to me I feel like that's what we were made for...for fighting and testing the boundaries and limitations.

When we are called to war we give it hell every time and when it's our time to look our fate in the eyes we do it with such honor and pride others should be amazed but anyone who know us and our hearts and our determination it's nothing new to them. It's just us doing our war dance. Preparing for exactly what we were made of...given them hell

So I think in times when words are cheap go by the action and do exactly what we were born to do...fight. It's all we know how to do and we do it well.

This is war

Cystic fibrosis rules my world that is no exaggeration or white lie.

It rules and controls every aspect of my world.

I try to show it who is the boss and I try to pull the famous "because I said so that's why" but it calls my bluff. It has grown stronger then me

Their once was a time when I was the boss and I ruled our world but like many things it got an attitude of its own and more importantly a mind of its own and when we were battling head to head for control it showed me its power and much to my surprise I caved and I let it win. I let it have the upper hand and ever since then we constantly go to war and at one point I was the leader for a short time. It waited and it saw my weakness and it attacked and with little support I gave in.

I train regularly preparing myself for our next big show down and I know one day I will win the battle and the war.

Cystic fibrosis you better watch your back cause I'm coming after you.

Dear Megan

It breaks my heart to see the beautiful present Megan's mother sent me. I wish it was Megan who sent it. I wish there was no need for such a meaningful present.

I think it's common in our cf community to experience survivors guilt. I find it most difficult around major holidays.

I feel like I question my presence in this world when a beautiful soul like Megan was taken so soon and with so much life to live. So many things to accomplish.

I think I can say with confidence that there is no hurt like loosing someone you admire and who look up to and look to for strength.

Dear Megan,
Missed you more today then yesterday, how was your first Christmas in heaven? Did Jesus let you sit next to him at his big celebration? I bet you loved being so close to him and Christina. I couldn't imagine the hurt to not be at home for Christmas but in sure you got the best view of your god babies on Christmas morning! I think of you often...everyday. I wish as would of gotten the chance to meet and go out and dance all night.

I'm afraid Megan. I don't know how long I can keep watching others die from cf and watching others get weak. It's a true test of my strength. I wish this was all a bad dream but no matter how many times I wake up your never there. Megan I miss you but I find peace your in a place where you belong among other angels.
Xoxo Jessica

He is my Aaron

My thought process is wacky. I look at something and I automatically go to the dark side of things. My biggest fear is for others especially the ones I love the most and hold a special place in my heart.

I see things and I fear the possibility of regret for him. I'm afraid he will look back and have moments where he says what if...?
I shouldn't of been so quick to leave and not give that last goodbye or the hug she wanted so badly.

I fear the regrets he will have. I hope no matter what happens between now and that moment I hope he never forgets the bond we have and the times together are always held so close to my heart I keep them with
me at all times. They are my fondest memories.

I fear he will look back and see moments where he wasn't getting the attention he needed and blames me. I took and still take a lot of attention and focus away from him when he is such a great man. He's becoming a wonderful boyfriend and he's grown so much I have nothing but pride in him and the man he is. He might of felt in the shadows of me and my cf but he will always be my star. I told him I want him to live for the both of us traveling and doing things I can't...when he accomplishes things I feel so much pride that I cannot contain myself. He is always in my heart with everything he does. He is my brother my best friend...he's my Aaron.

Making memories

It seems like we're loosing so many strong fighters in our community. And right now this is a time to grieve our losses and pay respect to those who have gotten there wings; we all do it differently while some take time away from Facebook and emails while some just celebrate the times they shared and reflect on the friendship that once was.

If this tells me anything about life it seems like it all ends to soon...it's not long before where standing reminiscing about the things we should of could of done. One thing I enjoy doing is making memories and you never know when your making a good one.

I'm not sure if I shared the news with anyone but Matthew and I bought a home...with wheels on it! We decided we wanted to travel and this is the time in our lives to do it. We have had this vacation planned for months and it couldn't of came at a better time...I needed a vacation after loosing Hannah and Spencer. No I didn't know them personally but I feel the loss and it weighs heavy on my heart none the less.

So Matt and I are on the road just the two of us making those memories. We're going to pismo beach hearst castle and ending the trip in solvang. It's our vacation. It's our time and I know it will be memories that will last a life time.

Wish us luck and safe travels. Wish us time to bond and become closer then we already are but most Of all send us peaceful thoughts.

Peace love and hello kitty

Soupy sails Lol

This scene in friends keeps replaying in my head and every few min I let out a chuckle and think soupy sales!?

Pheobe -(as Mrs. Adelman): I KNOW WHO IT IS You remind me of-- evelyn dermer.
-'Course, that's before she got the lousy facelift.
Now she looks like soupy sales.
- pheebs, who's evelyn dermer?
I don't know.
-Who's soupy sales?

Pheobe's massage client dies while Pheobe is giving her a massage and Pheobe believes her spirit is now in her...she keeps having these "elderly" moments and it's just a knee slaper.

Soupy sales where do they get this stuff. Oh friends you crack me up but it's further proof I should really find a hobby or something better to do with my time.

Soupy sales....gets me every time!

Dreams

When I was a young girl I dreamed just great dreams...many dreams like most children dream. They always were changing constintly. Always a bigger and better dream then before. I once dreamed to be the best woman's rock climber and everyone would ask me what pushed me to be so great and I always stood tall and said CF was something I was born with and even though it has caused some bumps in the road I'm stronger then cf.

After that I wanted to travel and study in Australia. Going places by myself and being an educated person despite my disease.

My greatest ambition came later...wanting what I knew was imposibible. A family. 2 babies and a home and this was my greatest goal on life. But reality sank in and I realized the risks and even tho I accepted the possibilities I was never okay with loosing a child or leaving my child due to my health.

My dreams now are small and less ambitions but they are my dreams my thoughts and even if I never complete the things I always wanted to I hold strong to the hope that others can do it despite Cf or any disability

My dreams are small and humble compared to what they once were. I once was able to concour anything but now I feel weak and choose my battles much more cafefully.

I accept the things I cannot do and am thankful for the things I can still do. " Different but not less" - Temple Grandin

Dear Matthew

Dear Matthew
Your working hard tonight like almost every night; and well I'm working hard on going to bed. Do you remember one of our first dates and I told you that I was sick and couldn't promise to grow old with you? You grabbed my hand and told me you wanted to spend "our" days together taking care of me. Remember? I bet you never thought it would be like this did you? Me either. One of our first fights I told you to leave now it would be easier on both of us and you stood there and told me you would never leave me. I lied and so did you...I said I wanted you to leave...I never meant it. And well you left years later. I cried and cried and I tried to hate you for leaving and honestly it was easy for a little...but I never was able to move past the good times and accept we were over. I still remembered our first vacation to Solvang and our first holidays and the time spent in hospitals for doctors or port accessing or even those few hospital stays. I use to tell you that you were my sunshine my only sunshine and that was so true cause when you were gone I was at my darkest days. You came back and sometimes I ask myself why...but everyday I'm thankful for you coming back to me and loving me at times when I'm unlovable. I will spend everyday thankful that I have you...hand in hand we will always walk and no matter you will forever be my sunshine. Forever and a day

Bring you back to life

Do you ever have moments where your doing something and your mind drifts off and you realize these are the moments that you'll remember forever and these are the moments that when your at your worst will bring you back to life?

I'm in bed tonight with a killer headache that makes me think what did I do to deserve this pain. I feel our newest addition sleeping at my bed...and as much as I enjoy bossy or Bosco right now I know when he grows up to be a full grown mastiff weighing probably close to 200lbs I might regret letting him call my bed his bed; but for now I enjoy the late cuddles when he's cold and I believe nothing is a better start to a day then puppy kisses.

Back to my original thought...those moments what are they for you? For me they are simple but I hold them close to my heart I think about the car rides and the conversations. The tears and hugs and I think about special occasions. I have my dark moments you know that I have never been shy about those moments but trust me I have moments that are the best moments. Seeing my baby Jax for the first time on the ultra sound...made me cry. Knowing moments like those are what my life is made of is nothing short of amazing in my eyes. Im going to try to be better about sharing those moments with you all

Friday night fun

Nights like tonight tell me two thing one i'm truly a unique soul and it's not necessarily what your doing but who your with. I spent most the night putting together Jax's room with my cousin and her fiance my brother and Matthew. As I'm sitting on his floor cleaning some icky gooey mess it dawns on me...even in my worst moments it's nights like this I will treasure and hold close to my heart. Being with my family is the best nothing beats them and then when you add on preparing for Jax's arrival nothing in this world is better and I challenge anyone to tell me they had a better Friday night. It's not your typical Friday night but nothing beats the love of a family. Especially on a Friday night.

I'm back...be afraid. Or not, your choice.

Isn't it crazy the life we live rather it's with a disease or a limation the people and the things you experience in the long and difficult road were forced to travel at times make it all worth while. Im not one of the rainbow and sunshine cfers it never has worked out well for me my attitude has been make the best of what you got and it's okay to have days where you throw your arms in the air and cry and scream and say things that shouldnt be repeated. Yes I have those days I think everyone does it's just some are more open with those days. Man I have been MIA for so long it's weird to blog. I have recently watched the power of two the amazing story of the twins who have cf and have had a total of 3 transplants between them. (not 3 lungs per twin...one had 1 double transplant and the other had 2 double transplant) I got the chance to interact with them this year at CFRI abd I will be the first to say they are amazing and inspiring in so many ways. I'm impressed in so many ways. I know alot about others but I'm not always outgoing as I appear to be on this blog I can be shy mostly depending on my mood and the person. I'm unique in so many ways not just cause the cf but cause I realize im just born to stand out. I wanna be different and trust me you won't find another like me. Haha plus I'm funny.

I never thought I wanted a transplant and there are still moments I'm not sure that's the choice that's best for me. I doubt my strength and my determination but mostly I just feel like I have accomplished alot in a little time. I have friends who tell me they would beat the shit out of me If I chose to be done...and I usually smile but inside im screaming it's not your choice. Im the one struggling to breath and frankly It's not there body but I know that comes from love and I appreciate someone telling me they want me around. My friends and family are the most important thing to me. More important then anything and everything and the thought of not being there for them is heart breaking. I asked once to find my true meaning in my life and as I was watching the movie I realize whatever the purpose is I'll find it in time but I know I should take comfort in just simply being here surrounded by the ones I love and the ones who love me

Peace love and hello kitty

I think in life we all want the basic things happiness love and companionship. This is just my opinion and even though I think myself at times am insightful believe it or not there are others who disagree. Madness, I know. Haha

I find myself happiest when im surrounded by others especially when they are happy. I enjoy the small talk and the mindless chatter about anything. I enjoy others. But I do enjoy my alone time...just not at night. In the night the depression takes my hand and it pulls me deep into the dark.

I see this disease drive others to do great things in there life, they take the negativity and darkness of CF and turn it into something beautiful. Hope.

With good comes bad we all know how this world works

I miss my friend Megan terribly. I also miss Brandy and my babies they moved and left me behind :( I cry for them constantly and I'm finding it difficult to let them go and not miss them to the point it hurts. My tt started first grade and I won't be there, it breaks my heart. I miss them.

Tonight is one of those nights; my stomach hurts my body aches I can't find a position where my lungs arent in pain and to put it quite frankly im just fed up. The numbing head ache doesn't help my mood.

I'm waiting for my moment where I finally find the purpose of my existence. Sounds heavy huh? I feel like I'm floating by in life not making waves or not even being noticed. I struggle seeing what others have accomplished in comparison to me.

It's a struggle to stay healthy let alone find my purpose and accomplish whatever that is. Give a girl a break. Geesh

I know I have been Mia for a long time my apologizes but really I have so much to share it can just be hard to separate good things from bad right now they just all feel like a blur all entwined into one mess.

Good news is coming tho I promise and thank you for sticking around and show me some love I always love the love from others also throw in some good vibes they never hurt anyone

Peace love and hello kitty
Jess

fight for your right to be "normal"

I'm an odd person having CF in the first place puts you off to a bad start in the "normal" category. There are times when I can be very independent and self sufficient and times when I'm needy and just plain useless. I can be everything I hate; rude short disrespectful and down right mean. I literally can be anything I choose to be. (thanks dad you were right) I struggle at times to be true to me and when Cf grabs hold of me I fight back. But there are times when it wins the battle but not the war.

My battles are constant damn near never ending. If it's not one thing it's another, but to many of my warriors out there this is nothing new to us it simply is the normal in our crazy mixed up lives.

We fight for the most basic instinct; to live. While others just waste away in life we fight to exist

Normal? Who wants to be normal when you can fight and give 'em hell.

walking twoards a better day

I wrote this a week ago

Days like today make me grateful. Grateful for the air in my lungs the ability to put one foot in front of the other and walk. Walk towards better times leaving the emotional "funk" behind. Eating lunch with my girls gabbing about nonsense but at the same time a moment I will never forget. A real chance at happiness for myself and for others who aren't here with me physically but emotionally.

I see so clearly today when god takes a life he gives life. I don't feel like everything he does is just and has cause but maybe today I understand how this whole thing works. I find comfort In being able to see my baby "cousin" someday grow, but for now I watch baby bean take form and get life and that makes me happy. Makes me feel complete.

We have nothing to loose but only love to gain

A true fighter is laid to rest today, 24 years In warrior mode making CF the looser in every fight, always coming out victorious even in her greatest and last battle...she left on her terms. Such a true act of bravery and honor.

Today a family buries there beloved daughter. Sisters say goodbye to there sister and an angel leaves this earth.

Take a simple second and tell someone how much you love them, miss them admire them. Give that hug you have been meaning to share. Give them that warm embrace that is long over due. What do you have to loose? Nothing but only love to gain.

Nothing in life is fair, we all know that to well. Hug your loved ones tighter tell them how much you care.

A family buries there baby, a friend says goodbye to a dear friend and heaven gets the best angel to ever brace us with her earthly presence.

Megan, I adore you. I always felt such a connection to you. Our talks and letters shared are priceless to me, feeling like you completely understood me on every level CF or not was truly an amazing gift. I can say I'll miss you but those words do not do the justice of the emotion and hurt I feel. you were taken so quickly and too soon. I have never seen someone fight the way you did you are a true fighter. I will miss you terribly but look forward to seeing you again someday.

http://www.cff.org/Great_Strides/JessicaBenson7192

Donate Donate Donate!!!

clarity

I have brief moments of clarity. I see things from a different light. My life isn't what I thought it would be. 24 and living is something I never thought would happen. I have always been a dreamer I'm one of the people who feel there life should be more like a music video...dancing and singing and shoot matching outfits with sequences why not right....dream big. But why just dream big live big too. I try to do that live big but my definition of living big is probably a lot different then yours. I live big by loving big. I hug I kiss I love. I try to be open to others. So my question to you is do you do the same? Love big? Dream big? Live big?

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Why are you so mean

One thing I struggle with is people being mean to me..it happens more often then you would think. But I struggle with the feeling its because of my disease. I once had someone tell me they were tired of tip toeing around me trying not to upset me because I'm sick . This hurts me in every aspect it's hard enough living with this disease but then feeling like your "friends" cant be real with you cause you are sick. What a shitty feeling.the last thing I ever want to do is make someone be fake with me cause they are worried about upsetting me. It's hard enough watching my family suffer through this damn disease but then to have a friend make it obvious I'm making there life hard because I'm sick makes me just want to cry. I never think my needs are more important then others...they are different but I'm still a person with feelings. The most hurtful thing is when someone attacks or judges me because of my cf...it's not something I chose to live with and if I could change it I would. People like that hurt my heart. It makes me just want to cry. I'm not much of a cryer but it helps me feel better. Sometimes it makes me wonder why do they have to be so mean?

Sorry for the spelling and grammar...blogging from the cell phone again.

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Day Twenty One

Something you wish you could forget

Something you wish you could forget this is troubling.

Usually if its worth forgetting I forget it!

I cant forget this moment

I have certain moments were i remember things vividly, the emotions and surroundings. I remember the night when Conner Reed passed away

http://notsobrightandshiny.blogspot.com/2010/06/conner-reed.html I remember reading this blog and just the tears wouldn't stop i was sad for his family his brothers his mother; the loss of a child is unimaginable to me. LOVE LOVE LOVE

R.I.P Conner you are missed by many.

Day twenty

A place you want to travel to
Australia!!!!!

Sorry I can't post a picture I'm blogging from my cell phone.

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day nineteen

A picture of you when you were little

day eighteen

A picture of your biggest insecurity

this i hard, I'm not sure what I'm insecure about. It changes depending on my mood. There are times where I'm insecure about my feeding tube. Especially when its bathing suit time and I'm not in the comfort of my own home.

But there are times where i could care less.

Day Seventeen

A picture of something that has made a huge impact on your life recently

It doesn't say rather its a good impact or bad impact.

I'm not insulin dependant....yet. I know my CFRD is a big issue and i know that's a lot of the reason I don't feel as good as i should. Damn you CFRD!

Day Sixteen

Day 16

A picture of someone who inspires you.

I'm lucky enough to have met this person and I'm even luckier to have called this person a friend

Sheri Mount. She was my fairy god mother. I was diagnosed at 10 and I met Sheri when I was 14 or so. Immediately I loved her with her big hugs and smiles that lit up the room. She was the person who for many years put on an amazing benefit for cystic fibrosis called sizzlin country. This was her passion she had no connection with CF until she met a little boy with CF and fell in love with him and made it her priority to fight for a cure. I spent many years participating in this amazing charity being a face to this disease, I stood up there year after year with many others but slowly CF took them all. Sizzlin Country was an event not to be missed, the event did more then just entertain it was a sign of hope that we were going to make this disease a thing of the past so many people famous people cared about the disease I was fighting. It was an amazing feeling and I'm honored to have been in the presence of Sheri.

Sheri lost her fight to pulmonary fibrosis June 17 2008. That was the day we lost an angel who lived among us, she went back home. I miss her and she has inspired me to keep fighting and if I can be half as charitable as she was then that's good enough for me. Miss you Sheri xoxox

Day fourteen and fifteen

someone you could never imagine your life without

Aaron J. Benson

He is my best friend. I couldn't imagine not having a brother but i couldn't imagine not having an amazing supportive brother who sticks by my side through a lot. He is a devoted brother. He is loving and caring but all in his own way. He is shy but once you know him he never shuts up.

I'm lucky to have grown up with my best friend.

Day Fifteen

A picture of something you want to do before you die

Id like to own a house someday. Id like to just have my own space to decorate and make my own craft room. I don't care if its small and if it's a work in progress that would be okay with me.

Day Twelve

A band or artist you love

I love Paramore.

They are a good mix of my emotions.

I like to listen to them there old and new stuff.

day twelve

Something you love. I love my babies. They are my sunshine. I'd do any thing for them they are such amazing kids

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Day Eleven

Picture of something you hate.Llamas.

Enough said.

Day Ten

A person you do the silliest things with
Well today i ate Aaron's fake birthday cake with sprinkles...She has me do some odd and silly things...but all she has to say is...."Aunt Jess...I love you so0o0o0o much" and lets face it everyone id do anything for her

Auntie Jess loves you pretty girl

Day Nine

The person who has gotten you through the most

Brandy, your the best and with out you i would not be where I'am today!

<3>

Day Eight

A picture that makes you laugh

This was a picture from a vacation we took to Canada and New England.

This picture captures my Mom and Brothers relationship. They are silly but together through it all. I laugh every time because we were making fun of Aaron because since he got his gold tooth he hasn't quit smiling and it was just a funny moment.

This is another good one! All my doggies in mom and dads bed.

Day Seven

Yes, i know i skipped day 6 but ill be honest with you...i didn't like it anyways.

So Day seven. A picture of your most treasured item....

Hummmm I'm not sure if i treasure an item...i enjoy many things but i enjoy my Bently

He is the best gift i have ever gotten.

He is funny...adorable to me.

He isn't the most lovable dog but when he lets you love him it's those moments that are special

He is so bossy its unbelievable

He likes to sit at the dinner table like that's where he belongs

He makes me laugh so hard when he runs super fast but his butt is practically dragging on the

ground. I laugh so hard i cant breathe

So...Mr. Bently i love you and even though you like everyone better then me, your still my favorite.

Day Five

A picture of your favorite memory

well, lets just scratch this post up as a fail.

I don't have a single favorite memory.

I have so many i cant even explain them all to you and i definitely don't have pictures for every moment. I usually don't have time to run and grab a camera. I remember the picture just fine in my mind and in my heart.

But because this is a picture challenge ill show one of my favorite pictures

This picture was taken the weekend i just got home after a hospital stay. When I'm admitted I always like to plan a breaking out party...for when I'm free of the hospital. I remember sending out the texts saying i wanted a party and a party is what i got!! I love moments like this where I'm surrounded by the people who love me and support me.

So in the picture is my cousin Angel and I. I'm doing Iv's out by the pool...sure beats a hospital room in my book!!

So i have so many great memories and even though most of them are random and unusual Its those moments i treasure the most.

Day Four

A picture of your night

Well my nights are usually the same...Dinner..Tv...Treatments and More TV

Tonight was no exception; other then the three additions. But in Pajamas and blankets we cuddled and watched Tv.

so picture this

But with more blankets and of course Mr. Bently on the other couch he looks like this....

Day three

A picture of the cast from your favorite show

I'm not sure i have a single favorite show. Spending lots of time doing treatments and everything else CF throws at you i find myself in front of the tube more often then not. Right now my favorite Show is Teen Mom 2.

I know its lame, but i really enjoy watching these Moms handle there babies and life. Mostly i like to watch the drama. Man these Moms ha

ve a hard life. Some of the cast members i like better then others and some i just can't stand. My favorite is Leah. She has twins. can you imagine 2 twins at 16?! You can tell though she is a good mom and it tugs at my heart to see her going through some health issues with one of her twins. I wont lie, it has brought me to tears. I tune in Tuesday nights and watch my show. Check it out sometime let me know what you think!!

Here is Leah and her daughters Ali and Aleeah

Day Two

A picture of you and the person you have been close with for awhile

Matthew and I in High School

Matthew and I met in elementary school, we grew up together very close...in elementary school we were both very tiny so naturally we stuck together.

In middle school...we still were smaller then everyone else but we were still best friends

Our relationship really took off when we were in high School he transferred from a big school to my school which was a school of 50. Immediately we were close and we became thick as thieves. Everyone always thought we would end up together but we had such a great friendship we both agreed friends is where the money is.

So to Mattie...my best friend who i adore. I love you so very much and i know you and i don't talk as much as we wish but you are forever in my heart and I'm lucky to have a friend like you who has stood by my side through ALOT Matthew and Jessica Best friends FOREVER

Day One

Day one

1. My middle name is Renae. That's why my blog URL is 65 roses (cystic fibrosis) 4 JRB (Jessica Renae Benson)

2. Usually 96% of the time all I wear is jeans

3. I'm like a stalker in the sense I know a lot about you guys but you know very little about me. And yes I talk about you like I know you personally. 

4. I sleep with a stuff moose named cookie. Cookie claims to be both male and female it usually depends on how I feel and address him/her

5. I'm 24 years old and I do not have my license.

6. I bought my first car in August 2010 even though I do not have my license

7. I hate apple sauce even though it has nothing to do with apple sauce and enzymes because I wasn't diagnosed with CF until I was ten

8. I have an odd and some might even say an unhealthy love for hello kitty.

9. When I was younger I always wanted to be a writer, but because of my poor english and grammar I gave that idea up

10. I hate llamas. They scare the shit out of me. And Ostriches too. Oh man they freak me out

11. When I was in 1st grade my teacher use to call me brown eyes 

12. I wish I was a ballerina. But my mom said no.

13. I look a lot like my Mom ;But have more of my Dads personality but lord help us because I got my mothers attitude 

14. If I had half the talent my brother has I would be doing big things in my life

15. I give the best hugs.