Its back, with a vengeance.

Its that time again.

CF awareness month.

Its here. Its big. Its in your face.

CF awareness videos. Fundraising push.

LOOK WHAT I HAVE TO GO THROUGH PEOPLE!!! WILL YOU PLEASE PUT DOWN YOUR FREAKING CUP OF COFFEE AND GIVE ME A HAND?????

Too much, I think. However the thought has crossed my mind.

Natalie and I spent the larger part of this afternoon at the park. By the time we were done she looked at me and said, "Momma, no more pictures okay?". I tried to sneak in a couple more, but she quickly gave me the classic Juli look. The "do you think I'm that stupid?" look. So I put my camera in my purse.

I did manage to get a couple in that were pretty good. About to embark on a new CF video of my own.....here's a sneak peak of some of the shots. Some edited, some not.

To post or not to post, hmmmm.

I try not to be too politically charged. It leads to arguments, mass discussions in which you will never get someone who disagrees to see your side. Opinions suck.

That being said, this is my little platform, and I feel the need to say a few words regarding the recent events in Pakistan.

September 11, 2001 We were stationed at Ft. Campbell, Ky but we lived off post. Chris wanted us to live as close to "normal" as humanly possible, away from the uniforms away from the air field, the constant helicopter fly-overs. When he was away from work, he wanted to be away from it. So we had an apartment clear on the other side of town, close to the Red River and downtown Clarksville. Caitlin was just a baby. She had slept late that morning....it was a rare occasion and I was laying in bed enjoying it. Chris had left for work, early as always. PT first thing in the AM meant he was long gone before the sun ever came up. I heard the phone ring. I didnt move. I wanted to rest. The answering machine picked up, but immediately the phone started ringing again. I figured it must be important, so I got up and answered. It was my grandmother. "Ju, go turn on the TV" is all I heard. I asked what was wrong. She was frantic. She instructed me to go turn on the TV and she would call me back. I hung up and stumbled to the entertainment center....The TV came on just in time for me to see the second plane hit. I was confused. I was scared. I watched in horror. Caitlin had woken from the ringing of the phone and toddled into the living room. I scooped her up and held her close sitting and rocking her on the floor with tears streaming down my face. Panic. Chris. Where's Chris. Immediately Ft. Campbell was locked down. No one on or off the base. Streams of barbed wire. Concrete pillars blocked the entrances. Helicopters patrolling the airspace over us. Panic. It was one of the longest day of my life at that time. I stayed glued to CNN all day. I didnt realize at the time that I would spend the large majority of the next 3 years in the same position. I got a phone call late in the evening. It was Chris. "I cant talk long. Im not going to be home." "Ok, if not tonight then when will you be?" "I dont know, Juli. I dont know if I will be home at all." Tears. Panic. Chris finally made his way home the next night. Already he was different. I saw it in his eyes when he walked in the door. He was tired. He was worried. And so the nightmare began.

We lived for weeks not knowing what day or what time he would be leaving. Phone calls in the middle of the night, he would jump and leave, we would say our goodbyes as if he were never going to return only for him to get to come home the following day. This went on for what seemed like ages. The day he really left we were so used to him coming back home....we said our quick goodbyes expecting to see each other again later that night. I went to Wal-Mart for groceries. I didnt go to the Commissary anymore....security was too tight and it took too long to get on and off Post. I left Chris a note on the door telling him where I was and when  I would be home. I was in the check-out line when my cell phone rang. It was my FRG leader, Ashley. She was the one who kept us wives in the loop on what was going on. She simply said, "They're gone." "Gone where?" I asked with such innocence and such naievity that I surprised myself. "Juli, they're gone." she repeated. When she said it the second time I understood what she meant. I sat on the floor of Wal-Mart and cried. I couldn't breathe. He was really gone. The cashier cried with me, as did the lady behind me in line.....I went home and took the note off of the door. I cried as I realized he would never read it. I cried as I realized that he was gone before I ever wrote it. I cried for Caitlin. I cried for myself. I was alone. There was nothing I could do about it. He was just a baby, barely 21. I was a baby, barely 21 myself. War. Seriously? I assumed my seat back in front of the tv, watched CNN, waited for word, waited for something.

You cannot understand the pain, the sacrifice. Perhaps this is all a lie. Perhaps this is nothing more than a political "pick-me-up". Regardless of what I think about our proof, our reasons, the lies and the truths.....Chris was sent there under a single premise. Afghanistan was harboring terrorist, not just any terrorists, but specifically Al Qaeda and OBL.

I was at work when I heard the news. I laughed jokingly with a patient because Obama was interrupting Celebrity Apprentice, what could possibly be this important this time of night...on a Sunday to boot. I shrugged off the announcement. Went into another patient's room....nothing.....another room, news....Osama bin Laden is dead. Another room. Another room. My phone exploded with notifications. My supervisor. I locked my cart and had to walk away. I went out into the night air, turned my face toward the wind and cried, the wind blowing away my tears......he's dead. Its over.

OBL is dead. I do not jump for joy at his physical passing. But for me, this is the ending of a story that started 9 years 7 months and 22 days ago. Unimaginable pain. Change. Divorce. What if September 11th had never happened? Im not trying to throw a party or anything, but dont ask me to be sorry that the son of a bitch is dead. Symbolic or not, he's gone, and that's okay with me.

Borrowed from a friend:

This is a "pick-me-up" for us mom's, but I think that it can be adapted for my friends with CF as well. This is our lot, this is our journey. We are neither foresaken nor alone. We are not weak, we are not less than perfect. We are stronger than we imagine. We are blessed beyond measure, even though its hard to see and hard to understand.

The Chosen Mothers by Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”

Finally, He passes a name to an angel and says, “Give her a child with cancer.” The angel is curious. “Why this one God? She’s so happy.”

“Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”

“But, does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps -”Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side.”

My first, my fabulous, my Caitlin.....

I didn't know life was going to be so complicated.....I would have listened to my parents better and stayed at home longer....."Yes Daddy, I know I'm 35 years old and I should be ready to leave home.....but can't I stay just a while longer....."

Caitlin says she's going to live with me forever, that she's never going to leave home. I told her that I was going to remind her of that statement in 6 or 7 years.......If she holds true to her current statements, I'm perfectly okay with that....I would love to protect her from what the world has to offer as long as humanly possible.....she's had enough reality already.

Speaking of Caitlin......she's turning eleven in a few days.....eleven. one, one. 1-1. 11. Wow.

Caitlin is my world. She is so smart, so understanding, so loving, so caring, so compassionate. She is responsible and neat.....she is quick witted and funny.....She truly is the perfect child. She has started to form her own opinions about things and I openly encourage her to share them.....I want her to understand that she has a voice.....and I want her to use it.

I miss her.

Her father and I share custody so she is with him for a week and home for a week.....its hard on me, its hard on Natalie, and its hard on Caitlin.....but she would have it no other way. Believe me, Ive tried. She wants equal time with us.....she refuses to be the child who barely knows her father and only goes to visit every other weekend (her words).....we have had many discussions regarding the matter......She loves him so.......She protects him with ever fiber of her being......From what, you may ask? The answer is simple. Everything. Anything that she thinks would make him feel bad or sad or upset or put undue stress on him...... money, trouble that she has with her friends, opinions about things that she thinks that he may not like or agree with.....I try to explain to her that that's not her job......I hope he knows.....I hope he understands what she holds inside until she gets home to me.....I hope he understands what she does for him.....Ive tried to explain it to him.....I just don't know.

When Caitlin came along, everything changed. Not in the sense that you may think.....not the money or the fact that there was a baby in the house, that's a given, that all happened too. But the most important change came within moments of her birth.....I became a mother.

Caitlin's father and I were married while he was stationed at Ft. Campbell, Ky. Therefore Caitlin was born in a military hospital....not the nice suites in the hospitals that we have now. There was a labor room, a delivery room, a recovery room, and a post partum room....it was like playing musical chairs. Just when you got comfortable, they would jerk you out of the room and throw you somewhere else.

We were alone, except for my two sisters who were 14 and 17 at the time.....I shake my head in disbelief as I write this.....those people sent a newborn baby home with two 19 year olds, a 17 year old and a 14 year old....wow. Anyways.

I remember them placing her on my stomach.....I remember being surprised by her head full of jet black hair and i remember the confusion I had when she looked up at me with those dark, dark navy blue eyes......I tease her and tell her that she looked like a little Mexican baby when she was born, but she really was beautiful....she always has been.

We were taken to recovery. I remember the colors of the curtains. Chris was to my right, sitting there, there was a phone, I don't know who I talked to or who he talked to but there was a phone call, maybe two.....they took Caitlin to bathe her.....when they brought her back they wouldn't let me hold her because they wanted to keep her in the warmer to help her maintain her body temperature for about an hour. It was the longest 45 minutes of my life.....I just laid there looking at her while she cried. I kept telling them that she was hungry, tears streaming down my face, pleading with them to let me just feed her.....They finally handed her to me.....there was a sigh of relief, an indescribable peace, she was in my arms and all was right with the world again.....

From that moment on it has been she and I.....through her Daddy's deployments to Afghanistan and Iraq, through the divorce, through losing our house in Katrina, through her first days of school, and my first days of nursing school, through job changes and life changes.......She truly is my hero. She is everything that I want to be. I'm proud and humbled to be her mother.

Happy, Happy Birthday baby. Mommy loves you!

Orals and Nurses.....

oral antibiotics.......hmmmm now theres a topic we haven't touched on in a while.

Natalie has been extraordinarily healthy through this winter and spring.....if you don't count the November culture result debacle.....for those of you who missed it, you can refer to the blog post entitled "Homeless with PA. Please help!"

Well our luck ran out a couple of weeks ago. Its taken me a minute to write about it. It was scary and I'm not all about causing an unnecessary uproar amongst the few family members who do actually read what I write.

Natalie had done her evening treatments, as usual.....she went to sleep, as usual, but while she slept, she began to cough uncontrollably, 5 minutes of straight coughing then a reprieve, sleep, snore, then 5 more minutes of coughing......called the pulmonologist....contemplated an ER trip.....something was moving......she couldn't get it out......snoring, retracting while breathing mixed with this strange gasp in between, every couple of breaths.....snore, snore, snore, *gasp*......i repositioned her, tried to wake her (which she wanted nothing to do with) , contemplated extra treatments and just when i couldn't take it anymore.....she started to breathe easier.......she stopped the snore....she had cleared whatever "it" was, and drifted into a deep sleep. This, of course, was just in time for the pulmonologist to return my earlier call.....I told him what I thought, mucus in the upper airways, perhaps a bit of inflammation, moving a plug, her lungs were clear to auscultation anterior and posterior all the way into the bases..... what do i do? His response? "Well it sounds like you have it under control.....follow up with your primary and your pulmonologist."

Aggravation ensued....... Did he realize what I had just been through? How my heart sat in my throat. Did he realize what its like to sleep with a stethoscope around your neck, waiting, double checking, triple checking as if her lungs were suddenly going to be worse than they were 3 minutes prior......

I am a nurse, but you don't trust yourself with your own the way that you do with others.....I have heard hundreds of breath sounds ( I wont be arrogant and say thousands, but theres been a lot in my short nursing stint)......I knew what I was listening to.....I understood it.....but paranoia as a mother is overwhelming....."what if I'm wrong?" "what if i missed something?"

I crawled out of the bed the following morning, stethoscope falling to the floor.......I kicked it.....aggravation.

A trip to the pediatrician......

The nurse placed the stethoscope centered on Natalie's chest......I didn't know what she was doing....respirations? I didn't question her......but Natalie did. She looked at the nurse and said matter-of-factly "Ummm, my heart is on this side." pointing indignantly at the left side of her chest......I started to laugh. It was definitely a moment to remember.....but so sad.....she's four....and she's correcting stethoscope placement for an apical heart rate......The nurse said "I can hear just fine right here. Would you like for me to listen over there too?" Natalie looked at her as if she were retarded and said, "ummm, no."

As my stepmother said, "She's not going to be a firecracker.....She's going to be the whole fireworks show."

Oral antibiotics ordered.

Yucky Pink this time.....it could be worse. It could be Yucky White.

Improvement.

Moving on.......

Round one down.

~j

Adventures in Anxiety

I have never really been an anxious person. Im more laid back, go with the flow, "it'll be a'ight" type.

Yesterday, I took a stroll in the day of the life of the "others".

It sucked.

Heart racing, short of breath, mind going a million miles a minute, diaphoretic, all out panic.....xanax please? Well I have no xanax, never have had one, but from what I hear, that's what I needed.

So what is the one thing that brings me back?

I wish that I had some really smart quick fix, but I dont.

They say you cant know where youre going until you remember and understand where you've been.

I stand on the shoulders of giants.

I have always known this, but yesterday, I needed a reminder.

For those of you who dont know, this is my (short and sweet) story.

I am second born to young parents who divorced early in my life. We were poor during my younger years.....we lived in a trailer on my grandparents land.....we didnt have much but we never hung our heads.....we didnt know we were poor, we were a happy, proud group.

 My grandparents were my focal points, they were my stability.....even today, after so many years of going without them.....they still bring me back to square one.....when I am scattered, when I am scared, when I am at my wit's end......I go home.

I live in "town" now. At least that's what we used to call it when we were young.....there was nothing for miles so when you needed something you "go to town".

So yesterday I took a drive. I went to my parent's house first. Its a nice 25 minute drive out of the city and deep into the country. We are the suburbs, so when you get outside of the burbs you go straight into the middle of nowhere, usa.....here's what I mean:

Now the great thing about yesterday was that it was a beautiful day. A little chilly.....but just nice. A good day for a drive. A good day to open the sunroof, feel the wind, and just go.

After I made it out to my parent's house. Yes, I said parents.....my Dad and my step mom are the people who raised me.....therefore, they are my parents. End of story.

Anyways.  I didnt feel like I had gotten my "drive" out yet. I hadn't finished my pity party just yet, so I drove further. I drove past nowhere....back to the beginning. Back home to my grandparents.

My grandmother has been gone since 2003, my grandfather since 2006. I guess I've never really gotten past it. I need their guidance. I have unfinished business. I needed to see them....since that wont happen, I got as close as I possibly could.

My grandparents owned a restaurant....we were raised in it. Took naps in the corner on blankets....did our homework at the table in the corner.....ran around the bar playing chase before the walls were complete....it was home too. I started waiting tables and washing dishes at an obscenely young age. But as my PawPaw would say, I learned the value of a dollar. It burned in 2007 after a freak mid-day storm landed a lightening bolt in the storage shed....the fire spread quickly. There wasnt much left to do  afterward but gather what we could and move on. Even so, there are pieces of my grandparents still there. And so there, I went.  My PawPaw's roses still bloom through the weeds..... his cactus that he brought back from a roadtrip to Mexico (or so the story goes).....his peach tree still blooming, his pride and joy.....oh how he loved that peach tree. He used to get so mad when the patrons of the restaurant would pick his peaches.....

A trip to the cemetary, a drive past my PawPaw's cypress trees that he planted....

Yes. That says 1899.

A drive to the church that he loved so much.....the place that used to drive my MawMaw crazy because my PawPaw would make her help him cook every 5th Sunday as if he were the only one bringing food.

So that's it. That's all that's left. Moments. Memories. Pieces of my grandparents. Some flourish still, some a fraction of what they once were.

But what this really is.....is a reality check. A reason to be grateful.....I truly stand on the shoulders of giants. People who were so strong willed, so hard headed, so hard working......people who went through more than I ever have or ever will......and they came out on top.....So can I.....if I just remember....

 

Random things Ive learned in the past 21 days:

I've never had a "weight problem" per say. As much as I would like to down on myself (one of my fav pass times) and say that Ive always been a cow, sadly, I cannot.

I have my grandfather's tendencies to be a tad lanky and while I have no problem getting curves.....its never really gotten out of hand.

That being said, my last 21 days on this diet has taught me a lot about weight loss, eating, and habits.

So here goes.

My top ten things you should know while dieting:

10. You must sleep to lose weight. Not just regular sleep, but all out let your body rest.....You starving for goodness sakes.....LET YOUR BODY REST!

9.  You must eat to lose weight. The moment that you say "Oh, I'm just not hungry." Is the moment that your body realizes that its starving and holds on like hell to every smidgen of food you put in your mouth.

8.  You must have a Teflon coated pan if you wish to eat....that and A LOT of baking dishes.....

7.  Dieting requires cooking. If you do not like to cook. You should not diet. Eating out is like diet murder.....only with slow and determined torture beforehand  and afterward.

6. The world does not care if you are dieting.....they will eat what they want anyway and they will do it right in front of you.....

5.  The Reese cups are not going to magically hide themselves in the fridge. The ice cream sandwiches do not magically walk back to the store. The "Natalie" food does not become suddenly unnecessary and disappear from the cabinet.

4.  Generic brand items are good, but not always comparable. Generic Pam sucks. Refer back to #8

3.  Egg whites are a good choice in breakfast food while dieting. However, if you want to eat 2 egg whites, you should make 3, if you wish to eat 3, you should make 4 and so on and so forth. The reason for this is that AT LEAST one whole egg white is going to stick to the bottom of the pan. Please refer back to #4 and #8.

2.  Dieting does not suddenly cure your lazy streak. You still have to make yourself get up and do something....a most unfortunate realization.



AND FINALLY, MY #1 LESSON IN DIETING........***drum roll please***



1.  Scales are the invention of the devil. They taunt you. They stare at you, tease you.....and when you finally give in and step on them.....they tell you what a loser you are. My advice? Throw them out the back door.....or even better, don't buy one in the first place.

So am I a little bitter? I don't know.

 I have hit that "over 30" point in my life. The place where people tell you that weight loss is nearly impossible. Your metabolism slows to a near standstill.....the world falls apart around you. Wrinkles come. Collagen is lost. Where the ghosts of your past sneak up on you and suddenly appear all over your face......

Don't get me wrong. I don't mind getting older. I just never thought it would be me doing it.

Diet with care. ~j