Tuesday, March 30, 2010

Spring cleaning and starting over......

"...Its been a long December and there's reason to believe, maybe this year will be better than the last...." This song has been playing in my head for a while now. Its been a long winter and to finally break out of it is a really good feeling...I dont remember seasons affecting me so much when I was younger, maybe its just all the changes that have happened in the past few months are starting to get to me, I dont know but whatever it is, its feels good to take a Claritin, open the doors and feel the sunshine again.

With the coming of spring comes the fun and excitement of spring cleaning, wipe the dust off, throw away the junk that has accumulated over a winter of hanging out indoors, rearrange the furniture and start over. What a lovely idea starting over is...a new begining, wipe the slate clean, and start new. A new resolve, a new direction...Im thinking about getting a new hair cut to go with it....with my hair more than halfway down my back, the chances of that are slim, but its a thought just the same.

Natalie has adjusted well to her vest treatments. She quickly eased into her full 20 minute sessions. She's such a little trooper. She adjusts, adapts, and soldiers on. However, in the interest of full disclosure, I must say that she has found the one way that Mommy will stop her treatment and take her vest off...."MOMMY!! I have to go to the bathroom!!!" She pulls that one at least once every treatment....and yes, sometimes she does actually have to go to the bathroom :) She's so cute when she's trying to outwit me :)

Easter is just around the corner and I am a self professed procrastinator...so this week we are not only doing spring cleaning, but we are also up to our bunny ears in errands that need to be run. So here's to a busy week, here's to spring, and here's to hoping your week is as productive as Im hoping mine will be.

Saturday, March 27, 2010

Breathe Easy Eva...

My heartfelt sympathy and love to Eva's family in this difficult time. She was truly an inspiration in the community.

Friday, March 26, 2010

Death.....An outsider/insider/i dont know point of view.

This isn't really a question for me, just a question in general. In my line of work, I deal with the elderly. People who have lived 70, 80, 90 years and are ready to meet their maker, they're ready (usually long before their time) to let go, they've reconciled their past, their present, and have no burning desire to move into the future any more than they already have. They're WWII vets, Marine pilots, Naval Nurses, women who worked as riveters and steel workers while the men we off fighting on foreign soil. They've seen the advent of cars becoming commonplace, they've seen man walk on the moon, the microwave, and yes, the computer. They enjoy the simple goodness of a sunny afternoon and are grateful for things like a touch on the shoulder, a hug, and a moment of our time. They've lived amazing lives and they're ready to rest.....As an outsider looking in, I can handle their willingness to go "home".

By the same token, there are young ones that fight like fire. They're 50 somethings 60 somethings and they don't believe its their time and you can see their desire to move on, not to see Jesus, but to rehab, to go home, to make my workplace only a memory, I cant blame them either. But even if that never happens, compared to 6 years, compared to 26 years, heck even compared to 36 years, they've had a fair shake, right? wrong? How many years are enough? How long do you get to live before its fair that you pass away?

I follow Eva's blog on live journal (65 Red Roses) and I listen to (read) her comments, unrelenting "Eva don't give up!" "Eva we need you here!" "Eva just breathe!" and my heart goes out to her. I don't want her to die, I don't want anyone to die, she's too young...its not fair. But sometimes people just need to hear that if they need to let go, if they don't want to fight anymore, if they are tired, its okay....its okay to let go and we who are left behind will be okay somehow, somehow we will manage, day by day, moment by moment, we will find a way, even though we don't want to, we will find a way, even if that "way" is nothing more than opening our eyes. Being in my line of work, I deal with death quite frequently. It truly is a beautiful thing to watch the struggles and pain of this life disappear, no more pain, no more fight. Of course we cry for ourselves, we love our people, we are quite attached to them, they're part of our family, but removing ourselves from that, and looking at it from a medical perspective, it was time. It was okay to let go.

So is that the answer? When medically you've done everything that you can, is that when its okay to let go? what about before that? what if you just don't want to be tortured with tests and procedures anymore, you refuse treatment, you sign a DNR, then is it fair? then is it okay to let go?

My grandmother passed away 7 years ago and there is not a day that goes by that I don't wish that she was here with me, what would she say about certain things? I think about how much she would love Natalie's personality, how she would adore the young lady Caitlin is becoming. I would love for her to see the person that Ive become, I was so much different 7 years ago, I wish I could have made her proud when she was still here. Its not okay that she isn't here, Ive learned to live without, but its not okay.

The truth is that human nature tells us that its never okay, there will never be a time that we can view a death as a nonevent, it will always impact us negatively. Once we have lost someone close to us, we are never the same. So whether we fight for our loved one, we fight for a friend.....we will always fight, but we fight for ourselves. The terrible, gut wrenching, make you puke truth is that its only for ourselves that we fight, WE don't want to lose them, WE don't want to endure the pain, the change, because God knows, the ones we lose are better off than we are, there is no pain, no tears, no struggle, no fight, only peace. Isn't that what we all want? Peace for our loved ones who struggle, just peace.

Natalie:"There's a monster under there!"

Caitlin:"There's no such thing as monsters, just people dressed up like monsters.Then there's people like Scooby Doo who catch them and bring them to jail for scaring us."

Its moments like these, laying in the dark, between my two little ones, that I have to simply lay it all aside. Forget the worries of the day, forget what has yet to come, forget what has yet to be done, and just be. For a moment I bask in the beauty of the world through their eyes, grateful that they have each other, forever grateful that they were given to me.

Children are a crazy, amazing, beautiful, worrisome, hair graying, scary, rewarding adventure. I'm happy to have been invited on this ride.

Tuesday, March 23, 2010

Midnight fears of an overwhelmed Mom......

When the lights are turned out at night, when everyone is in bed, I usually am the one sitting awake in the glare of the computer screen lights. I don't stay up because I'm not tired, I don't stay awake because its fun, or because theres anyone online...I stay awake because I need time to process the events of the day, to decompress, to unwind. I listen to Natalie cough and breathe, waiting for the slightest clue that we might need a trip to the clinic. I make sure Caitlin is covered, comfortable, and her TV is off....she constantly leaves it on and you just cant get a good night sleep with the TV on. I stare at the toys laying around that I'm pretty sure I asked someone to pick up, listen to the dishwasher run, stare at the pile of laundry, go room to room and look at what lay before me for the next day.

When the thoughts of what is undone have been processed, filtered, and left by the wayside, other thoughts creep in. How did we end up here? Why did we end up here? The fights that occur, the ones that come because I feel like I'm being pulled in a million different directions and the only result is that life is maintained, never improved. I want to do fundraising, I want to be the "fun" parent and do everything the girls want to do, I want them to have the perfect everything, I want the house to be spotless, I want the laundry to be done, I want the cooking and the grocery shopping to be done. Regardless of the fact that I prefer to see myself in the "I am superwoman, I can do it all" kind of light, that is simply not the truth, or perhaps it is the truth, I can do it all, I just don't feel like I am doing it right. I want someone to pass the buck to, I want someone to take the pressure off, when the truth of the matter is that the only one applying pressure is me.

I want my daughter to be healthy, I go to great lengths to make sure that everything possible is done to keep her that way, but I have another daughter, a 9 year old who doesn't have CF, who needs her mother just as much as Natalie does. I feel guilty because Natalie requires so much attention, so much time, not just because of her disease, but because of her age too.

Caitlin is coming into a sensitive time in her life, I remember being 9. It was hard, it was confusing and I needed someone to pick me up and show me that I was okay, everything was okay. I want to make sure that she knows that its going to be okay. Shes a spunky little thing, with all the life, energy, and imagination that comes with being 9. She's too mature for her age, seen too many things, been through too many things, sometimes I wish she would relax a little more, she worries a lot. Shes outspoken and insecure, she's protective over her family (especially Natalie) but opinionated about the choices that her father and I have made. I encourage her opinions, I encourage her to speak her mind, she is a people pleaser, always looking out for what others want, nearly to a fault...I'm trying to break that habit before its too late. I want her to know that her thoughts, feelings, and opinions are just as important as everyone elses, Its taken me 30 years to figure that out.

But when it all comes down, when the day is done, there is only so much you can do. I pray every night that I am doing enough. I keep telling myself that tomorrow will be better, tomorrow I will do better, do more. I think my children are happy, they have a lot of privileges and things that I didn't have, I tell them that I love them over and over throughout the day, I try to make them happy and I hope they are. But I have very real fears that I am running out of tomorrows, running out of time to make it better, to prove (even if only to myself) that I am doing EVERYTHING possible for my children. Caitlin is getting older and Natalie's disease is progressing. When does this end? Where does this end? Those questions make my skin crawl, make my heart hurt, and tonight those thoughts just cant be entertained.

Friday, March 19, 2010

Vest System Day 2.....not a total disaster.

Well, at least she didn't scream when she saw it this time. We got it on, she started to fuss a little, but I kind of get the idea that she's only fussing because she thinks shes supposed to. I only say that because when Natalie really and truly doesn't want to do something, she is strong, she fights and she is relentless. Today, she was just kind of whining. Hopefully that means that she just finds it to be more of an inconvenience than a life altering, emotionally scarring event. We tried singing, we tried, making noises, we even tried the Crayon and paper idea that Piper had, but that just frustrated her. We got through an entire five minutes before she started to have a nervous breakdown. The MD said it was okay to do the vest in short increments until she gets used to it. So here we go, working our way up....

Thursday, March 18, 2010

The Vest System......better known as Exorcism in a Bag :)

I had hoped to have some pictures tonight, proudly displaying Natalie's first vest session, but there were no pictures, no smiles, it was just a mess. Its not funny, its really not, but Im trying not to be so incredibly frustrated, hence the title of this evenings blog. Today's meeting with the Hill-Rom rep and the training session that followed was a total disaster. My poor baby, she just screamed bloody murder. When I went into this whole thing, the idea was for Natalie to get better airway clearance, and she did, just not from the vest. The rep turned it on, and she screamed, not just a regular cry, an all out, top of her lungs, demon exorcism scream, it was like nothing I've ever heard. Actually I have heard it one other time, her first nebulizer treatment in the hospital she did the same thing, we were all in tears. This time I didn't cry along with her, I did my best to reassure her, to try to focus her, to talk about hugs, and making funny noises, but she would have none of that....It was heartbreaking, frustrating chaos.....Here's to hoping for a better session tomorrow.

Tuesday, March 16, 2010

Time to get real.....

Its easy to throw on a happy face and show the world how good your life is, its easy to focus on the fabulous parts, but it takes courage to tell everyone what goes on when the doors are closed and no one is looking.....inspired by Sarah who forges "Not so bright and shiny" I'm going to take a break from "Care Bear Land" and break it down for you.

I am in no way even close to in the same situation that Sarah is in, my heart breaks for her. I know that sounds cliche, but its so very true. One mother to another, her fight is inspiring and her courage and strength are awesome (not as in cool, as in the true definition of the word) I find myself in awe of her. I hope that I can find the same courage if/when ever I am in a similar situation.

The truth is that I feel terrible complaining at all when I know that there are so many other mothers like Sarah, and like Breck
who have more complicated situations than I do at this time. But the truth is that I'm tired, and I haven't even started yet.

I got a call from a Hill-Rom representative who assured me that we would have Natalie's vest by the end of the week. I don't want it, I don't even want to go there, having the nebulizer that we had was acknowledgement enough and now that it is gone (we cleared her pseudomonas x's 12 months of cultures) We are getting an even bigger, bulkier, scarier piece of machinery. I just want it to go away. I want to wake up tomorrow and for this to be a really looong really bad dream....that just isn't going to happen though.

Natalie doesn't eat well, this is not new information for those of you who know me from CysticLife. I am constantly trying to find something that the child will put in her mouth and swallow besides apple juice. Scandishakes save us on days that she wont eat, but she's already on an appetite stimulant....just what exactly is it going to take to get her to eat consistently? I don't know, I cant really complain about her weight right now, but the problem is that she loses it so quickly and for no reason at all, she goes through spurts and if I am not 100% on top of it, it could get away from me without even realizing it.

I feel like I am always on edge, always on the verge of breaking down, constantly beating myself up (not literally) From the time that I wake up to the time I go to sleep, I am counting calories in my head, calculating the number of enzymes she needs, assessing and reassessing the situation all day long, exercise, approximate the number of calories burned during exercise, the amount of salt lost during sweating that needs to be replaced, its mind numbing and when I lay my head down at night, I'm kicking myself because, "I could have tried this for her to eat" or "We should have stayed outside longer" or "stupid stupid, you forgot the clorox wipes for the shopping cart handles" "Periactin, yep both doses...nasonex, yep, vitamins, yep, oooh darn i didn't watch her, hopefully she didn't hide them under the sofa cushions again....cpt....oh cpt, was that long enough? it wasn't long enough, maybe it was...do better Juli, you've got to do better"

I don't let it show though, I keep up a good front. People look at her and say, "oh, she doesn't look sick!" I just want to grab them and shake them and ask them "DO YOU HAVE ANY IDEA WHAT I GO THROUGH TO MAKE HER LOOK THAT WAY?" But the truth is that they don't have a clue. I'm trying to do fundraising, but I feel like people are tired of hearing me....or maybe I'm just tired of hearing me. I don't want anyone to feel sorry for us, I don't want pity, I just want someone to understand. I want them to understand what it feels like to be pretty sure that you will out live your child, I want them to understand what its like to place your hope and faith in God and at the same time in a pharmaceutical company who may or may not have the answer to our prayers in their lab, I want someone to think before they complain about their lives....I want everyone to understand exactly how precious each breath is, it shouldn't be taken for granted.

I go to work and I do the same thing that I do at home, give medicines, assess, reassess, call the doctor because I am the nurse, I solve problems, and I chart to show everyone exactly what Ive done about each situation, If I cant handle it then they go to someone who can, but whatever happens, I fix it,.....but I cant fix my baby.

Monday, March 15, 2010

Just put on your ballet slippers and dance.......

Its Monday guys!(WOOT!!) Most people cringe at the idea of celebrating a Monday, however with my work schedule (16 hours on Saturday and 16 hours on Sunday) Monday is a welcome sight. Its always tough to get motivated on Monday morning though, much like someone else's Saturday, I just want to lay around. That's just totally out of the question though, even if there were no treatments to do, no medicine to give, Natalie is a no stop all go three year old that never gets tired, PLUS I've resolved both of us to a healthier lifestyle. So, we started off the day with a trip out to lunch then headed to the park.

I try not to get involved when Natalie goes and finds other kids to play with, she needs to learn how to make friends, and how to deal with rejection when they don't want to play with her. That being said, there was this one little girl today who really didn't want to be around Natalie for some reason, every time Natalie would go to ask her a question, or try to talk to her she would just walk away....finally after persistent little Natalie annoyed her enough, she turned around and said "GET AWAY FROM ME!!" I watched Natalie very closely, trying to gauge her response, she never missed a beat and went to play somewhere else.....I didn't handle it quite as well....I was heartbroken. My mind started to wander to days not that far from now, kindergarten, first grade....would she have to deal with this all of her life? Would children shun her when they found out, would she be ridiculed, mocked, would she be able to find friends that could handle her CF. What if she's never even healthy enough to go to school long enough to make friends.....oh the places your mind can take you. I'm just glad that she is so very strong, she still had a blast, and we still got some exercise in :)

After the park it was time to come home and get dressed for dance class. As upset as I was about the park thing, I was equally, if not ten times more excited about the acceptance we received when we got there. Today was our first class and everyone was sooooo very nice, and soooo very accepting, other little girls were just as sweet as they could be and Natalie just melted right in to the group. I watched her hold hands and come out of her shell (not that she has a thick one) and be involved and interact with other children. It was fun to be on the outside looking into her world for a moment.

So today I guess the issue is with me, my own insecurities in her disease, my fears, my worries. Apparently I need to take lessons from my little one: Some people like you, some people don't, just put on your ballet slippers and dance.

Friday, March 12, 2010

My two little girls.....

The bubble monster came to visit in the bath tub
"Something's not quite right" one whispers.
Splashes and bubbles onto my bathroom floor
all because someone found a blue marker.

"Mommy said put them away!"
That means that Natalie has found another marker
but its better than the crayon papers
Ive been picking up for days.

CF has been put away for the moment,
only bath tubs, bubbles, giggles,
laughter, and bargaining for toys,
just the two of them.

Thursday, March 11, 2010

Denial is not a river in Egypt......

My brain hurts....earlier today Piper, the author of "A Matter of Life and Breath" a blog right here on Blogspot, posed some very thought provoking points that I have mulled over and over and over and over......well you get the point. She questioned the idea of being positive vs being real in the face of such a massive foe, CF of course :)

I won't sit here and lie and say that there aren't days that I am angry, there are days that I refuse to acknowledge her disease, days that she gets her medicine and her treatments but the reality gets shoved waaaaay back to the farthest reaches of my mind, days that I want to sit and cry, days that I go camera crazy and film her doing the most normal random things "just in case", there are days that I search for life insurance, burial insurance, wonder if I would make her funeral the send off of a princess or a dark solemn event.....I go there, I would be foolish and unrealistic if I didn't validate those feelings by giving them light just every once in a while. Of course Im worried, of course Im scared, I know every sound she makes, every different cough and whats wrong by the sound of it, I know the color of her snot and every other bodily fluid and excretion and know what its supposed to look like at all times and can tell you when there is even a slightest change.....

But the honest to God truth of the matter is that those dark places, those dark moments are not the reality of CF, at least not the CF that I deal with day in and day out. The reality of the CF that I see, that I deal with on a daily basis is a 3 year old little girl painting herself with permanent markers, munching on popcorn, peeling wrappers off of crayons and calling me at the top of her lungs everytime its time to wipe her boohiney. My reality is taming the squiggle wiggle worm while trying to do manual CPT, chasing after her with 5cc of Periactin because she thinks its funny to see Mommy run, and ooooooopen wide when its time for enzymes....Im grateful for these times and I thank God everyday for the life that I have, even the bad days.

That being said, just because this is my reality today, does not mean that this will always be my reality. As a matter of fact, we just got the call today to schedule a training day for Natalie's new Vest System....a corner, a revelation, a change in Natalie's condition....hence a new reality.

Just because things wont always be this way doesn't mean that I cant use my blessings and good fortune to help others, and by help, I mean staying positive, encouraging those who need it, and supporting those who need it the most in any way that I can. And what a disservice it would be to my daughter if all I ever focused on was the textbook reality of CF, and what an ugly reality it is.

I guess what it all comes down to is that the way you approach this disease is as unique as the disease itself.....we all have our own feelings, our own approach, and every single way is valid, its real, and its ours.

Wednesday, March 10, 2010

Who loves Scandishake? WE love Scandishake!

Natalie has been on nutritional supplements since she was 18 months old, her appetite has never been fabulous, we have had struggle after struggle trying to figure out what foods she likes best (changes weekly), what she "feels" like eating (usually not much), and at the begining (18 months old or so) we usually ended up settling for whatever Natalie decided, as is usually the case with a toddler, you cant MAKE them eat.

Initially we started Natalie on Pediasure....it was the sure fire answer to our prayers, packed with vitamins, fat, calories, and protien. It worked too, she gained at whopping 3 pounds in 3 months and we were more than happy to fork over the $9-$12 per six pack in order to keep the weight piling on. After 6 months, the weight gain started to fall off and the doctor added Periactin to our medication regimine. We didnt think much about it and continued with the Pediasure and the Periactin and continued to slowly add on some weight. Up until about 6 months ago.....then, one day, Natalie said "No".....uh oh?!

The extended time drinking the Pediasure had taken a toll on Natalie. She was TIRED of it and she absolutely REFUSED to drink ANYTHING out of her sippy cup because she thought it was all Pediasure....we had to get her used to her sippy cup again AND find a new way to sneak in some extra calories. Enter Scandishake!

Scandishake is NOT a meal replacement and IS NOT fortified like Pediasure is, but when it comes down to calories, weight gain, and taste....it wins HANDS DOWN! Granted it is more expensive, $9-$12 for a four pack, plus its not pre mixed (you mix it with 8 oz of whole milk) and if you try to drink it before its fully dissolved in the milk, its kinda grainy (blech!) But if you do it right, I havent found anything that beats it, AND Natalie will drink it, even after our unfortunate Pediasure experience. It comes in different flavors (vanilla, chocolate, strawberry) and it has 600 calories when mixed with 8 oz of whole milk (woot!!)

So anyways, just an opinion, it has worked for us so far......hopefully she wont declare war on Scandishake too :)

Clinic appointments and reality checks......

Who says CF clinic appointments cant be fun?? Natalie has a HUGE personality that takes over any room that she is in....she's dominating, she commands attention, and after all, who could resist?? she's just sooo darn cute! CF clinic is much like visiting family,albeit strange and remote family, but family just the same, after three years the nurses are like cousins that you didn't hang out with when you were young and the doctors are kinda like that Uncle that you don't mind talking to, but always talks about something you don't want to hear about :) They know when Natalie is coming because she literally runs into the nurses station at the clinic looking for our nurse, and looking for stickers. They are always happy to humor her. We draw on the bed paper in the rooms, play with the toys on the wall, and wait, patiently wait for what could make our day better, or could make the ride home a mind blowing rush of "what ifs".

Ive known since Natalie was 5 days old that she had Cystic Fibrosis. Even so, perhaps Ive just not fully accepted it. I understood the pancreatic insufficiency, the need for enzymes, I just assumed/hoped/prayed/imagined that her lungs would always be healthy...soooo apparently that's just not the case. In a dramatic turn of events, the problem at today's clinic appointment was not her weight, in fact her weight today ranked her in the 70th percentile for her age (WOOT!!!). The issue at hand is Natalie's lungs, there are marked changes from the last chest xray to the current chest xray. What does that mean? What do we do now? Well, quite frankly, it means that we hang on for dear life....fly by the seat of our pants into the wide wonderful world of "The Vest"....sounds scary, sounds intimidating, sounds like a big fat failure on my part.....however, in all actuality, its just the nature of the beast....a corner we must turn, a fight we readily accept, and might I add, expect to win.

Tuesday, March 9, 2010

Always and adventure, Always a story

I never realized how amusing my life is until I decided to start sharing it with you guys, not that I feel like my life is exciting, but Im hoping that maybe someone can relate, just maybe someone has been there, felt it, wondered it, seen it, hoping that somehow in the solitude that a mom can feel dealing with this disease day in and day out, I can find a connection, conjure a laugh, or make someone feel not so alone in their quest. Our day started out with grocery shopping. I am a nurse and I only work a "weekend special" for those of you who dont know, thats 2 16 hour shifts, one saturday and one sunday, so im pretty much out of pocket until monday, the good thing is that I am home 5 days a week with my little ones :) anyhoo, being gone that long requires groceries to be stocked so that there is an endless list of choices on the food end, i try to make it as easy as possible on her daddy, and in the end that means that its easier on me. On the way there, i did it, i admit it, i bribed a 3 year old, i told her that if she drank ALL of her scandishake, i would buy her a toy, and she did (YAY!) so mommy bought a toy :) it only took her 30 mins to pick it out too, i couldnt rush her, after all it was my own doing, right? i sat and watched her as she stood in the toy aisle, gazing in wonder at the what must seem monstrously tall and shelves of toy after toy, for a moment i envied her, how wonderful the small things are, toys, christmas lights, rainbows, sprinklers, all the things that seem common place and ordinary by the time we've grown "older and wiser" by the time we got to the checkout, the ice cream was melted all over the broccoli, but hey, we got an extra 600 calories in! woooohooo! :)Tonight we went to see "Princess and the Frog", it was Natalie's first trip to a movie theater. She kept asking over and over on the way there, "mommy, where is the DVD theater?" I suppose it was a cross between the fact that she knows that movies come from DVD's and us telling her we were going to the theater. anyways, i think i enjoyed it as much as she did, not that the movies was all that great, but I enjoyed watching her see everything for the first time, it must have seemed so big, so amazing, and for the second time today, i appreciated the little things just a little bit more because of her, because she is part of my life. My little girl is amazing, and she just happens to have CF.

Oh the guilt that comes with brushing her hair and telling her "No"

I love waking up in the morning to her morning breath and her saying "mommy, the sun is awake!". There is rarely a time when she doesnt start my day off in a really great way, I love this age and all of the curiosity and imagination that comes with it. Natalie is 3, but she is soooo smart....i know, i know, all moms think theyre child is the most beautiful and the most intelligent, we're supposed to :) After the initial morning routine has been completed, c'mon you know the drill......the fight to brush our teeth, whats for breakfast, what kind of "food mood" is she in today, enzymes, periactin, vitamins, 15-20 mins of CPT *whew* goes by quickly when you're typing it, but its at least an hour and a half process, she's a slow eater.....Anyways, after all of that comes the day's regular activities. I had to run to work this morning for a minute and so, of course, Natalie needed her hair brushed.....and this, of all fights, seems to be one of the most heartbreaking. I have detangler but she cries anytime she even sees a hairbrush. Yes, she has to have her hair brushed, yes, it must be put back, otherwise it goes in her mouth. But with all of the fights that i MUST have with her....the CPT fight, the blood draw fight, the chest xray fight, the nebulizer fight, i feel the most guilty about these, the dumb ones, I mean, in the grand scheme of things, what does her hair really matter, must she cry over this, must i be so insistant on the hair being brushed??? Then its off to the store to pick up some applesauce, the portable kind, that has the lids and are "single serving" so we can go out and about for a while without worrying about getting enzymes in her, and of course now there's the toy fight. Christmas just passed and i find it absurd that the child could possibly want anything more. We went way overboard for Christmas (we usually do) but somehow, even though there are still presents she hasnt fully appreciated yet, there is still the "I see, I want". Must she cry over a $2 toy? must i say "NO"? is the principle so important that I would have her cry over something so small when she has so many other, more important things to cry over? Day in and day out she tolerates things that other children have no idea about. Shes been poked and prodded and xrayed and tubed and monitored......doesnt this deserve a little wiggle room? Doesnt this deserve a break from "mommy the nag monster"? Or is it simply that I am so overwhelmed with guilt, i feel guilty that she has to endure this, why not me? Ive prayed and prayed, "God just give it to me, let me have her pain, let me have to take the meds, let me be the one to do the treatments, just let her be healthy and give it all to me" In the end, this is what we have been chosen for, in the end she must learn the lessons that all children must learn: hair and teeth have to be brushed, you dont always get the toys that you want, when you want them, everyone is different, friends are special people, sharing is a good thing, do unto others as you would have them do unto you, and Mommys are there to make sure you know how things are supposed to go, even when they themselves do not understand why they are this way.

Not everyone needs enzymes.....

Natalie is the only person in either of out families to have CF, we can go back 4 generations and know for a fact that it was never diagnosed....that being said, I have a 6 month old niece. She's a cute little chubby thing (no CF) who likes to stick things in her mouth, bang things together, and shriek for no reason :) I was babysitting her and as I was getting Natalie set up for her breakfast, I was also getting my niece's bottle ready at the same time. After I finished with Natalie's enzymes and sat her plate in front of her, I picked up my niece and started to feed her her bottle.....Natalie looked at me very confused and said in a very accusing tone, "MOMMY....YOU FORGOT AVERY'S ENZYMES!!!" My heart dropped and swelled with pride at the same time..... I told Natalie, "Baby, not everyone needs enzymes, but good job on telling Mommy." I was sad that I had to tell her in a round about way that she was different, but proud that she is so conscious of her own care, and the care of others, that she knew that youre supposed to have enzymes before you eat. So goes the ups and downs of CF life, small victories, pride in the strangest of places, and what seemed to be such a strange and difficult routine to establish, has now become common place for her, for all of us.

The good days, the bad days, and the ones that make you want to cry......

I am a nurse by profession, a mother by the grace of God, one of my daughters just happens to have CF. I am a fiance, a daughter, an Aunt......I wear many many labels and all of them is a caretaker in one form or another, this is my lot in life, i enjoy it, i thrive in it, but when I percieve failure, I can make life very hard for me :) Especially when I am thriving on the professional end but feel like I am struggling at home, when my patients are all doing well, and I cant even get Natalie to take a bite of food, that day, that moment is a hard pill to swallow.......

Today was a good day........one of those, the ones that make you sit back and say to yourself, "Im okay, she's okay, we can do this" . Natalie has eaten well all day, 4 pieces of bacon and a piece of sausage with grits for breakfast, some apples and peanut butter with a pediasure for a snack, chicken and fries for lunch, and the list goes on and on, shes been a human vaccum cleaner today and that, my friends, makes for one happy mommy...........The problem, it seems, that there arent that many days that are just okay....maybe its just being in the midst of it makes your memory short, im not sure either way. I know that finding high calorie foods that are have real nutritional value has been the new mission in my life (aside from raising my two little girls). It seems like everyone is so calorie conscious, i have to do two rounds of grocery shopping, one round so Natalie has her high calorie, high fat, high protien diet, and another round so the rest of us dont blow up like balloons......the attempt at balancing is never ending, but what a ride, huh?

However, everyday is not so blissful. There are days when she would rather do ANYTHING other than eat.......days that im lucky to get 500-600 calories in her, days that i want to sit and cry, days that it seems that a feeding tube is coming and would be a blessing, days that i just dont think that God chose the right mother for this little girl because Im OBVIOUSLY not doing something right........then she crawls in my lap and says "mommy, i so glad youre here" in that sweet three year old voice, and i know im here for a reason and there's nowhere else Id rather be.