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

New Lungs!!!

Congrats to Piper on her new lungs! Many prayers to her and her donor family! Looking forward to tomorrows updates!

feeling my age, not my shoe size.....

I remember when I was young, whenever I did something that wasn't the most responsible, thoughtful, mature or forward thinking my grandfather would look at me, shake his head, point at me and shake his finger wildly saying, "Sister, one day you're going to wake up and you're going to be as old as I am....." then he would finish with his point of view, or maybe just put his head down and shake it disapprovingly. I always shrugged it off, after all, what's that supposed to mean anyway, right?

Today I woke up and I was as old as he was. Maybe not in numbers, but I feel every day of my nearly thirty years. I'm tired in every way possible. I ache all over, my body, my head, my heart. There are those that laugh at me when I shake my own head and say, "I'm just too old for this....." They laugh because my numbers don't reflect my experience. Sparing you the details and perhaps sparing myself embarrassment, I'll just say that Ive seen abuse of every kind at a variety of ages, Ive been a military wife, Ive been the one sitting at home, going crazy sick with worry and fear through September 11th, a war on two fronts, then the shame and devastation of divorce, death, sickness, CF. My highs go as high as motherhood and my lows are too many and too shameful to display to the world. I am mother of a ten year old and a three year old, I am a nurse, a fiance, a daughter, a sister, a friend. I am anything I need to be for whoever needs me. I am severely codependent, I acknowledge it and I don't feel the need to change it. I sit in my living room observing the happenings. My little girls running around playing with their friends. Those are my little girls.....when did I get this old? I don't feel old enough to have children this age. I am sitting in this house, Justin and I have discussions about mortgages, savings, retirement, 401k's, buying furniture, replacing flooring and what kind of cabinets we want in the kitchen when we finally decide to replace them. Who has conversations like these? Who talks about this stuff? I'll tell you who, old people......

I read the blog Postsecret. Every Sunday there are new secrets posted. Mondays I sit and read through them, contemplating. What would I write on a single post card? Would my secrets fit on a single post card? How many post cards would it take for me to empty that little box in the farthest reaches of my mind. Would I dare put them on paper? Would I dare give light to the secrets that pull me down when I am at my lowest? Would I dare to acknowledge the ugly parts that keep me from believing that I am worth more than my worst thoughts or past actions? I don't know that I could.

On the opposite end of the spectrum, how empowering it must be to write down the secret, focus on it, decorate that card, personalize it, give it power for that one last moment and then send it away, away from you and to a place where maybe, just maybe it could help someone, make someone feel less "bad", less alone, less like a freak, where it could help instead of hinder, where it could help create instead of destroy.....

I don't really know where I was going with this one, but life has gotten in the way and I have lost my line of thought....dinner, bath, and now its time for bed......Im going to leave this one as a To Be Continued.......

laptop was KIA and Ive been MIA

I'm writing to you from a Mac....that's right, my laptop was KIA last week....such a sad, sad time. Ive been struggling to put together a post without erasing it and when the darn thing finally quit on me, it just gave me an excuse to not even try. Justin was kind enough to offer me this Mac, so I feel compelled to update. I don't like the way the keyboard feels, I don't like that it seems to have been made for someone who is left handed, it feels awkward, backward, wrong somehow, like I'm cheating on my laptop, so I'm just going to muddle through :)

We have had a busy week or two. Justin and I decided to pamper ourselves and the kids for the summer and get a membership to Francos, a very nice athletic club in Mandeville. Four pools, two water slides, sauna, spa, full upstairs gym, and children's areas that the kids are happy to get to visit, even if it means getting out of the pool.

Natalie is well for now, watching her like crazy....she's never been in a pool that wasn't our personal pool and exposed to this many people. It worries me, but the truth is that I want her to live as normally as humanly possible. I'll stop taking her if there are any signs that she may be getting sick from it, but she is just so happy in the water, I just cant see taking it away from her unless I absolutely have to. There will be no school this fall, she falls short of the October 1st cut off, so she has another year at home with mommy. That's not a bad thing for her, I think she needs the extra year, not because she is not ridiculously intelligent, but because she is just so spoiled, she doesn't listen very well, and this will give us a little extra time to work on that :)

Caitlin is enjoying her summer so far....she keeps asking me what we are doing this summer. I'm assuming that she means a beach trip or something along those lines. Ive tried to explain to her that its just not safe, I don't think she is grasping just how far reaching this oil spill is. Tar balls have been washing up in Alabama for the past two days and the oil sheen was supposed to reach the FL panhandle yesterday. Caitlin and I lost most everything we had in Katrina.....I know it sounds silly and its not even close to the same thing, but I just hate to explain to her that, once again, life as we knew it is gone, a trip to the beach will have to be planned far in advance, not the day before. How I hate to break that child's heart. She is so proud of the fact that she was born in Ft. Campbell, Ky. So proud that she was born somewhere other than here, she roots for the Titans and cheers for Ky in the college realm as well, even in spite of the fact that they are in the same conference as LSU.....but she is a Louisiana girl. Loves her seafood and her time under the live oaks at the park, and she finds beauty in our off kilter ways. I just don't want to tell her that its another change, not that she couldn't handle it, like i said before, maybe I'm just chicken :)

My accomplishments are limited to housework and work outs. I actually used the upstairs portion of Francos and worked out for a whole hour. Gonna try and do it again today. Another staff meeting, picking up Caitlin , squeezing in a workout ugh! guess I better get moving huh? ~J