Who do you think I am?

I probably shouldn't be doing this, but the truth is that some of my greatest moments of clarity come when I am away from home, when I can gather myself without everything staring me in the face.

I am sick, so sick of negativity...not just in CF life, but in every aspect of my life. I do my best to make the best of situations that would drive "normal" people absolutely batty. What is normal anyway? What do people expect from me? Quite frankly, I don't care(most of the time).

I am sick of being sad, of being pulled down by all that is around me. I was thinking about deleting my Facebook account, not because I don't like it, but because there is always something depressing, something sad, something going on. I take on the emotions of others very easily....its killing me. I have enough on my plate.


This blog was started for me. It was to be an outlet, my moment of peace, a place to let go, unwind, and vent.....This was never supposed to be an informative blog, a "I am woman, hear me roar" type blog. It wasn't supposed to be eloquent or funny, it was designed with nothing more in mind than...okay so it wasn't designed with anything in mind....nope, zip, zero, nada.

The problem is that I find that I am censoring myself....because I don't want to be judged, I don't want anyone get mad, get upset, freak out, think I'm crazy *blah blah blah* ugh! Its the 19 year old Juli....back with a vengeance :( ewwwww!

So consider yourselves forewarned....this is coming to a screeching halt. Beneath all of this is a real person, with real problems, with a real life, and this blog is mine.

I don't want to scare anyone off, I have no plans to bite off chicken heads or add porn to the site. I do, however, plan to keep it real, raw, and unedited....except for the occasional spell check :) But definately not as raw as Eddie Murphy's stand up comedy.

I hope you'll come along for the ride. ~J

For the Jones Family

Thinking of Brad and Sarah during this unimaginable time. For those of you who dont know the family, you can visit them at www.notsobrightandshiny.blogspot.com Just a warning, this may be difficult for some to read. love and peace tonight and always ~Juli

Scattered, Smothered, Covered.......

My life is an endless stream of oxymoron's, contradictions, contraindications, just plain weird. Its hard living in this skin....I suppose it could be easier if it weren't for me getting in the way all of the time. Only someone in my shoes, or similar shoes could understand why the previous statement makes sense.

Ive told my parents a million times that they made my life so black and white that I assumed that one day I would wake up and suddenly I would know everything. There would be some great epiphany and *TAAADAAAA* "Congratulations Juli, you've accomplished enough in life that now you know EVERYTHING!!!" (loud cheering and applause)

My parents did what they thought was right and I suppose it was a really good thing. The only problem is that it left me ill prepared for life's gray areas.....and omg they are everywhere. The lack of knowing what to do mixed with the idea that my parents always knew what to do gave me poor self esteem, made me think maybe I was stupid?, had no reasoning skills?, no moral compass?, or perhaps I should have never left home because I was obviously retarded or missing something somewhere.....Thanks guys ;)

However as life has progressed and I am nearing on the big 3-0, I have learned two very important lessons, everything I need to know for my daughters, I learned from the people who raised me. The good, the bad, and the crazy. They taught me what to do, what not to do, they tried....and thank God they did. Second, Ive learned that there must be something greater than us, there has to be.

Ive come to see that my life was laid out before me long before I had a choice, everything that has happened, was intentional, purposeful, and has gotten me where I am today. I'm in a good place, regardless of what i say.

I was a waitress before I was a nurse. One of my friends who had just finished nursing school came in, she was stressing about passing her licensing boards. She looked at me and said, "Juli, why don't you go to nursing school? You know you could do it." She changed my life, I didn't know why I needed to go to nursing school, It was never on my list of things I wanted to do when i grew up. But I went, and I loved it.

Natalie was born 3 weeks and 2 days before I graduated. I cried as I signed the paperwork to send her to the NICU, I had a great understanding of that paperwork, I knew what it meant inside and out, I had been tested on it. I cried, I held her after the doctor told me the news. I rocked her and told her I was sorry over and over and over again through my tears, even though I knew I could not have prevented it and had done nothing to cause it. I'm not saying that you have to be a nurse to be a good mother to a CF child. I'm saying that my path in life gave me understanding and brought me to a point where even though Natalie wasn't planned and it wasn't convenient to have another baby, I would have never exercised my right to choose.

I don't know where these days are leading me. I don't know my direction before I end up there. Natalie is hanging in there. Caitlin is growing too fast for me to keep up. Everyday I think that I could not love them more and then I wake up and I do. Time is flying by and I feel the need to hang on, hang on to them so tightly. I'm afraid. I fear the unknown and when looking forward, I see nothing but those big gray areas I was speaking of earlier. So all I am left with is faith. Faith that there is a plan, there is a reason, there is a purpose. I believe that, I have to.

So tonight in this muddled mess of a post, a peek into what happens when I free write when I am tired.....and pictures. Pictures of why I am sad tonight, and my greatest joy. Why I don't want to get out of bed sometimes, and my reason to get out of the bed all at the same time. My fear, my love, my hate, my hurt, my happiness.....all at once....everyday. ~j

8 am on a Tuesday morning.....what could possibly go wrong?

Let the food wars begin!

I guess if I were 3 and I had people shoving medicine down my throat and up my nose and strapping me into weird shaking contraptions, I would want to control what I could too. The problem is that Natalie chooses to control food. She doesn't realize what she's doing.....

Other times I think its just genetic.....there are some picky people in the family and her eating bears a close resemblance to them. The good news is that they all have outgrown it, the bad news is that it took each and every one of them a minimum of 20 years to accomplish that. I don't have 20 years to wait for her eating habits to change.....

If its green you can forget it, if it has more than one part to it (ie. a hamburger) you can forget it, if it requires being chewed for more than 15 seconds you can forget it....this leaves very little to choose from, but I am ever diligent, ever trying new things.

Sesame Street is blaring on the TV over the sound of the vest between phone calls to the MD office...... Natalie is coughing, but no fever, I think this is worse than being "real" sick. They wont do anything if she isn't running a fever, we just have to up her treatments and hope for the best. If they had to watch her cough and gag and sit on the sideline helpless to do anything but encourage her, maybe they would be more concerned, I'm not sure. Maybe there really isn't anything they can do, maybe we're already doing everything that we can.

Other than the (make you gag along with her) cough that Natalie has....she's fine. No fever, no malaise, no other signs or symptoms which makes for an awkward situation. To go out or not to go.....she needs her exercise, that will help, but I don't want to get her over tired or overheated and potentially do more harm than good. ugh!

Maybe a little further evaluation of the situation is in order, its early. Natalie was up and moving early this morning....that means we're all up and moving early.

Working on my blog...from my phone. How cool is that?

Thank You.

When my CF journey started, I was alone. Not just the "oh I'm lonely" type of alone, real alone. My sister helped with babysitting while I went back to work, my family would have done more if I had asked, but as far as moral support, I couldn't find anyone who understood....really understood. Newborns, NICU's, CF specialist, tests, blood draws....It made me want to crawl into a hole....A very deep dark hole. It made me hate myself, after all, I had given this little baby this dreadful death sentence. It frightened me beyond all belief, I think I thought about death, funerals much more then than I do now. If I could put it into one word....despair. Total and utter despair.

As with most of my stories, there is a light, however dim it may be, there is always a light.....

Strange became normal, fear became understanding, and this fragile frightening baby grew into my life lesson, my life's greatest frustration, and one of only two people on the planet that I would give my life for.

Almost a year ago things changed dramatically.....I got a laptop for my birthday and it was over....O-V-E-R, but in a good way.

I found the CFF on FB, CysticLife on FB, blogs, people, friends. People who however far away they may be, were right beside me, fighting everyday. *sigh* what a relief.

Today, I am so grateful for the people Ive "met", and grateful for those who remain "unknown". I love my online peeps as much as you can possibly love someone you "know" online. You all make my life easier, make me smile a little bit more, and make this CF life bearable.

So this one's for you, many many thanks, you could never know how much you are loved and appreciated.

blessings to you all this weekend, Im out. ~J

The only sure thing in life is that things will change.....

I don't want to make this post a depressing one, Natalie is fine....we're just starting down a new path.

Today was her clinic appointment. She's lost weight. That is not a really huge shocker seeing as how she was in the 70th percentile last visit. Natalie's weight is much like a roller coaster, it has its ups and downs....we just do the best we can. She hasnt fallen far, just into the 60th percentile, so we have 3 months to make it up before they start to intervene. Our clinic is real big on keeping her weight up, so we shall see.

Natalie's O2 sats (oxygen saturation) have been on a steady and progressive decline since January. January. January. I get so sick of saying that month, of reliving that month, but its when all hell started to break loose....a month I'll remember for life, a month when everything started to change. Anyways. Seeing as how there is a noted difference from January to March to June, we're starting on Pulmozyme. Im crushed. Not because I dont want to give her the medication, but because Ive spent the past 3 1/2 years bargaining with myself to make it alright in my head, "well at least she doesnt have to....(fill in the blank)...." Now those days are over. No more denial for me. We are finally, totally, completely CF patients, the vest, the nebulizers, the enzymes, the whole shebang. Oh how I wish that werent the case.

Natalie's doctor can see the difference in me. He looked at me, cocked his head sideways and says, "You look tired". This is simply a nice way of saying, "You look like hell, like you've aged 10 years in the past 3 months". I cant argue with him. I simply respond, "yeah, a little, but Im okay." Okay, fine, great, wonderful, fabulous, I am AWESOME....just ask me.....(that was a tad sarcastic....okay maybe a lot sarcastic) He just smiles, looks at me from the top of his glasses, pats me on the leg and says "Its okay Mom, she's doing just fine". Ive never been a huge fan of anti-anxiety meds, actually have been more of a "heal yourself" kinda girl when it came to such, but today, today I would have taken something if it were prescribed to me.

I must admit, however, there was a different feel to the clinic today. I dont know if they were just trying to make me feel better or if VX-770 and VX-809 are finally making their way into common knowledge or what the deal is but I had two separate people saying "just hold on Juli, it wont be long....." It was awkward to hear from the RT, from the RN. Ive said it to myself tons of times, sat in front of the Vertex page and cried....trying to move that stupid purple line with my mind....but to hear the hope in their voices, it was kinda surreal. I cant say that it has made me feel any better though.....as my Maw-Maw used to say, Im from Missouri, cant tell me anything, have to show me :) (for those who dont know, Missouri is called the "show me"
state) Oh and if you dont know about the Vertex pipeline, there's a link on this side of my blog. ------>>>> It shows their progress and how close to availability they are.

Got a call from my local CF chapter....great, they know I exist :) j/k....I told the girl that my motivation comes in waves, it does. Ive been trying, Im going to get out there again, I am....I just need a minute....or two, or three. Its hard to be a warrior mommy ALL the time, sometimes I just dont want to be seen or heard, sometimes I just want to be normal. I hope that doesnt sound selfish, but sometimes I need it, we all do.

Anyways. Sorry for my absence and lack of photographic "pick me ups" but I am still chained to the Mac, therefore not the happiest blogger on the block. Will try to stay in the loop more, I know Ive been slacking....but it is Summer....that means making the most of my time with Caitlin, with both of them.

I wish all of you peace this evening. lots of love! ~j