Friday, July 30, 2010

Its finally Friday and....

My girls are here. Both of them. Running together, playing together, quite possibly destroying the house together. Its the most beautiful noise in the world to me. I wish I could bottle it, take it with me. The laughter, the bargaining, the arguments, the compromise, all of it. They are beautiful people.

I once thought that life could never be so simple again, and perhaps it cant. However, the principles remain the same. Love others regardless of what they have done to you. Forget the arguments quickly because they wont make a difference in the end. Enjoy everything, even a cardboard box can be exciting. And compromise doesn't mean you lost, it means you both win a little.

My girls are daily reminders of what's really important. They make me strong, they make me decisive, they give me direction, they make me a better person. I don't know where I would be without them. Caitlin's grandmother looked at her father and me when Caitlin was still very small and jokingly said, "She's going to end up raising the two of you." It was a joke and no harm was meant, but all these years later, it has stayed with me, and how true it is.


Monday, July 26, 2010

Monday mood swings.....

I don't like drama. Its definitely not my forte. I prefer simple, to the point.

Like it matters, though. Drama follows me. It surrounds me. I hate it.

I believe when most people look forward to life, they look for adventure, they look for excitement, they look forward to moments that will make great stories. I just look forward to peace, just peace.

Natalie has waged another war against dairy products, except cheese and the occasional ice cream cone. This makes supplements nearly impossible. Scandishake is out most of the time, Carnation Instant Breakfast is out, no adding heavy whipping cream to anything....I'm screwed.

On the flip side, merely by chance, we found out that Natalie will eat Lo Mien....yay! I can eat Chinese food without hitting up the drive through window first! :) She seems to be branching out a little...just a little though. If I can add one new food choice per week, I'll be a happy mommy.

Caitlin is with her Dad again. I got pictures of her getting a pedicure today via MMS. She was excited. She needed a little pampering and I'm glad that her stepmother does those sorts of thing for her and with her. School starts soon....very soon. Ugh! Waking up at the crack of dawn, fighting about bed times, wake up times, dinner times, homework, procrastination.....oooooh my head hurts just thinking about it.

And as for me? I'm cold and munching on Dove chocolate bars and Slim Jims simultaneously. Yes you heard me correctly. If I read this somewhere else, I would cringe too, but for some reason its working for me right now. This can only mean one thing....its gonna be a heck of a week....I almost feel sorry for the people around me....almost. Went looking for apartments for a bit today....not fun at all. The good thing is that there are plenty available...I just have to adjust to living on a single income again. ugh!

But all is on the up and up. Hope it is on your end too ;) ~j

Saturday, July 24, 2010

Im pretty sure we've gone over this.....

For those of you who don't read regularly, for this portion of the evening, I will refer you to an earlier post titled "Who do you think I am?" it and read it carefully, understand it, know it.....

For those of you who are around more frequently, let me just say that today has been mind blowing for me. To be critiqued on the content of my blog is earth shattering, these thoughts are mine, therefore they are never wrong. These are opinions, points of view, and feelings....there is no right or wrong. You may disagree, but in this world, at this moment, while I type, I am not wrong. There are very few things that I do in life that are for the sole benefit of myself....VERY few. This blog is one of them.

I considered deleting the whole thing, but decided to blog about it instead.

I liken it to my own personal therapy sessions....I send these tidbits of my life out into the abyss, sometimes there is a response, sometimes there is a simple nod of understanding, sometimes there is nothing....and that's okay with me.

If you are here, consider yourself the voyeuristic type.....because you can gain little use from this blog, other than knowing that you are not alone in your quest to deal with CF, to deal with life, to take every bump in the road, every curve ball that life throws at you.....and you can manage. Trust me, if I can manage, anyone can.

I am not strong, I am not unique, I am not special.....

I make mistakes because I breathe. To err is human.....

I try to live day to day. Looking further than that is dangerous. It makes you vulnerable. It makes you dare to hope, to dream, to think that maybe, just maybe, there is life beyond what we surround ourselves with on a day to day basis.....

I try to live day to day....but hope is winning out, shadows are receding, and once again life is taking over....I am vulnerable, I am broken, but I'm still me. And I'm going to write what I want..... much love ~j

Thursday, July 22, 2010

Friday, July 16, 2010

CF on the run.....and running over me.

So all of us CF moms out there struggle with the balance of keeping life as normal as humanly possible, and still getting in every treatment, every nebulizer, finding food that has enough calories to count without being ridiculously unhealthy....its daily.

Life has been a pretty steady go, go, go for the past couple of weeks. Adjustment to a new house, new time lines, new routines and still attempting to find that balance. Work, play, and an extra pitter patter around the house make for some hectic times...but we're managing.

The best cure for insanity is routine. Regardless of what else is going on, there should be some things that always remain the same, or as close to it as humanly possible....

We wake up and do a vest treatment. period. end of story. If we have to be somewhere, we get up early, its just the way it goes....if we happen to sleep in, that's fine too, its done when we hit the floor and get good and awake.

No matter where we are, Natalie has snacks at her disposal for snack times. Snack times remain the same, just like meal times. This requires that I carry a bag that looks much like I just came from the grocery... disposable plastic spoons by the box, cups of applesauce, enzymes in my purse, enzymes in my bag, half the time my purse looks more like a pharmacy than an actual purse....but its a must, especially if you're on the road all day....stopping every 2 hours to eat or grab something just isn't feasible when you live in the area I live in....its usually 20-30 minutes for me to get where I want to go.....and it makes mommy gain weight faster than Natalie ever will ;) plus, it gets mad expensive to try and buy EVERYTHING while you're out....

We are blessed that Natalie's mid day routine is focused strictly on play time, her nebulizers are only once a day and therefore we are free from the time we finish her first vest treatment, until right before bed.

Dinner is later for us...we aren't ready until between 7 and 8....if there is company coming later than that, the meal is still made in time to feed Natalie between 7 and 8, if she chooses to eat again when everyone else does, so be it. This makes dinner time less of a hassle and much more relaxing....(when she isn't trying to get me to dress her baby dolls while i eat :)

Our bed time routine is a little more hectic....she's 3, she's never ready to go to bed so bath time is our cut off. We get a bath every night and both of the girls know that after bath....its quiet time...vest time....nebulizer time....time to just sit still. This goes over much like a lead balloon with Natalie and the fact that Caitlin is 10 and no longer finds it fun to play in the bath tub with Natalie makes the process long and not near as relaxing as it used to be....its another hair pulling, make you want to hide in a corner part of the day...there are many with having these two girls the ages that they are. I honestly thought that having them this far apart would be a blessing, after all what could a 3 year old and a 10 year old possibly have to argue over? The answer to that is everything.....EVERYTHING.

It looks pretty when you write it all looks like you could fit it into a nice little box and put a bow on it....but it doesn't always work.

Vest system hoses flying off, being pulled off and used as a hair dryer when mommy isn't looking....

The Vest being unplugged from the wall by a mysterious person named "Idunno" followed with a proud exclamation, "Mommy, I all done, I got all the junk out!" ......

Caitlin screaming because Natalie touched her, or knocking one of her dolls slightly askew while she was doing "inventory".....

Natalie screaming because Avery has decided that her vest console is the new place to sit....or pushing the buttons.....or just plain looking at her wrong...

It runs over me sometimes....sometimes I don't feel the need to fight back...sometimes I am overwhelmed, sometimes I am tired, sometimes i wear blinders and don't want to see the dark circles under her eyes, or just how tiny those little legs are, I don't want to feel how thin she is when she crawls in my lap....I just want it to go away.....

Its a crazy life, you worry when no one is looking, you put on a good face and smile and tell everyone you're fine, she's fine, everything is fine....just fine. No one understands what creeps in when no one is there, no one understands why you hesitate just a tad when correcting her, no one understands why you just cant bring yourself to tell her no when she asks for a toy every single day of the one knows what its like to live with the very real possibility that you will bury your child. It makes you hard, it makes you indifferent to life's smaller issues, it makes you rush....I need to provide her with her life experiences now, what if tomorrow is too late. I want them to have everything they want and I want them to have it together, memories together, playing, fighting, hiding under the covers with a flashlight....I need that for them now. I am growing impatient with myself, but there is only so much I can do...I work enough.... I want my girls to remember me, not my job. I want my girls to see life for what it is, a beautiful experience...not a chore....its not a chore.

Monday, July 12, 2010

Its Monday.....

Its Monday. Normally I would go on and on about how I hate Mondays and how I really should be resting after getting practically NO sleep since Thursday night.

Its Monday. Normally I would tell you about work...I would entertain you with a story or maybe just a general statement about how I really do love my job, regardless of what I say.

Its Monday. I should be curled in a ball on the sofa, regretting more than 50% of how Ive spent the last 29 years 11 months and 20 inner dialogue torturing me....relentlessly.

Its Monday. I should feel drained. I should be agitated. I should be tired...I should be yelling for naps and quiet.

Its Monday. I normally would tell you about the yucky virus Ive had over the weekend and how I am trying to avoid giving it to Natalie....

But I'm not any of these things today, and I'm not going to do any of these things today. Its Monday and for the first time in a long time, I am okay. The world makes sense. Life is as it should be. My mind is quiet.

I have no complaints of how unpredictable life is. I have no rantings of how much I hate CF. Natalie is doing well, her appetite has been wonderful today, thus far. Caitlin is with her father and therefore in very capable hands.

Maybe tomorrow will be different....maybe tomorrow I will fall apart. Maybe insanity, fear, doubt, and chaos will creep in and today will seem like a sick joke.....maybe....

Life is not perfect. I'm putting pieces back together, hoping that I remember where they go. I don't have a lot of material things, and maybe I never will....but I'm happy, my children are safe and happy and as healthy as they can possibly be......and that's good enough for me.

Saturday, July 10, 2010

Tuesday, July 6, 2010

I had planned on going on a hiatus of sorts....planned on running. I don't want this to turn into an "oh poor pitiful me" party and the best way to avoid such nonsense is to avoid the place that brings out my innermost

As it seems, blogging is addictive. I have found no comfort in the 36 hours from simply avoiding this place. In fact, I sorta miss plans have changed again.

Life alone is progressing. Finally starting to reacquire a few things that I left behind or gave away when we moved in together. This is thanks to friends and family. The same people who were there for round one are standing by and supporting me again on round two....Thanks guys. Aaaand there are some new faces who weren't around for my divorce who are hanging in and digging me know who you are, thanks for keeping me smiling. :)

The girls are fine. Caitlin misses her room, Natalie just wants to know when we can bring her toys. Soon enough though, all things come in time....looking into getting back into my old neighborhood, where I lived before Katrina....Caitlin is excited about that idea. We both loved it there. Natalie is oblivious. Doesn't ask many questions and is content with the answers I give. She's only asked to go home once, I told her we couldn't, she said "okay" and skipped off to play.

The world keeps turning, life goes on. There are appointments to be made and kept, dentist, doctors, specialists, lists to be made, dinner to be cooked, clothes to be washed, medicines to give, fun to be had, life to be lived....this was so much more earth shattering the first time....but that's for a different day.

all of my best ~J

Friday, July 2, 2010

when people asked me why, my answer was always the same. "Because he's the only person who knows everything about me and likes me anyway, hes good to me, hes good to my girls....why not?" it was all a lie, and now its over.

bubbles, stupid freaking bubbles, they blind you. but i keep my head in them most of the time, its a coping mechanism, its how i function knowing i have one child with a terminal illness and one who i will spend the rest of my life making up for her father's untimely retreat. for those of you unfamiliar with bubbles, maybe you could relate to blinders, rose colored glasses or some other stupid synonym.

i cant breathe. i cant eat. im lost. grey areas? stupid. nothing is normal. nothing is right. caitlin still doesnt know, she just got home yesterday and thinks we're spending time with her aunt. i cant tell her, not around all of these people.

the girls are fine. playing with cousins, running wild. oblivious to whats going on around them. Natalie's nebs are going well. her cough is almost completely gone. i am here, still functioning, still putting on a good face.

...and i am bearing my soul on the internet. why? why here? because i have nowhere else to go...not because its cool or funny or because i need attention, but because this is mine, my journal, my life. its a choice for you to click here....i live it.

Thursday, July 1, 2010

Dude that doesnt look like a speck of dust in your eye, its more like a boulder.....

I'm doing it again. Stalking the Internet. No real input to give. No words of wisdom. No witty or uplifting comments to offer.....I'm brain dead.

We did, however, have a major revolution today. Natalie actually held her own nebulizer and didn't have a screaming bloody fit. *yay* She was proud, Mommy was proud and we took pictures. I think it helped a lot better too :)

As soon as I figure out this computer or get my laptop fixed, Ill be happy to share....yes, yes, another, different computer....Apparently I have a problem, at least I'm starting to think I do :)

But fear not people, I am in one piece and goes on. Like one of my friends and fellow nurses said, Ive had worse than this in my eye and have made it just fine. I just wish stuff would quit getting in my eye to begin with, I mean seriously.....