Thirty Days of Thankful

Okay, so it probably won't be thirty posts. You guys know my lack of ability to commit to anything. However, at least it's a bit of inspiration to draw from.

Today it's going to be short and sweet. Right now I am thankful for cauldrons full of candy and Pedialyte.

Halloween was a success and the children brought home tons of candy....and the baby got a stomach virus. Vomit for me.....candy for them. Sounds about right. But, you know, they have to go to school sometime....the baby has to sleep sometime.....and when they do, that cauldron is mine.

All of my best. ~j

I know I've said this before.....

However, since it has been a while. Let me just go ahead and reiterate my general disgust for my so-called "close friends". I don't really care if they read this or not.....

All of the time I hear, "If you need anything, let us know!" or "If there's anything I can do, let me know!".

Well, here's the deal:  I don't EVER ask for anything. I don't ever take ANYONE up on their "offers". It's just not my thing.

I do, however, expect one thing. When it is Great Strides time.....when I start my fundraising push.....be supportive. That doesn't mean give me money.....that means like my status on FaceHell so that it stays at the top of the news feed for more people to see. Register and walk with me.....you don't have to pay anything, you don't even have to raise any money.....just show your face and walk with me......I mean, it would be nice if they chipped in to help raise some money.....

Why is it that when sh!t gets serious, everyone heads for the hills.......I live this f&^%ing bullsh!t and you just run at the mere mention of it? It's not worth two hours or even two seconds of your time? Really?

I have friends who have, who are, and who do, but it always seems that the ones who do the most are the least likely.....the last ones that I ever thought would jump in.....This is going to be one of our biggest years yet, and Im grateful for my new friends who are being so wonderful.....But it makes my head and my heart hurt....there are others who are supposed to be my close friends....the ones who you've had the emotional conversations with.....the ones who know your deep dark secrets (or at least one or two of them)....where are they?

Guess they aren't so close after all.

What do you mean I have a child with a terminal illness??

In this season of fundraising, I spend a lot of time talking to people about Cystic Fibrosis. I share the story of CF, where it comes from, how children are diagnosed, our diagnosis story.....There is a lot of personal information thrown around for the good of the community.....reliving a lot of heartache for a dollar.

I was giving my usual talk to a younger nurse about funding and the importance of private donations to our research and development when suddenly she pops out with, "Gosh, I just don't know how you do it." Confused, I curiously asked her which part she was referring to. I mean there are so many parts of this that are difficult. She looked at me quite honestly and said "I don't know how you can cope knowing that you will probably outlive your child."

I was floored. I mean, I don't live in a hole. I'm acutely aware of my situation. I'm aware of the possible outcomes.

But to hear it from someone else......

I was broken hearted.

I don't live in a mindset of defeat. I don't live in a world where that is the probable outcome....I live in a world where that is a possible, but very remote outcome.....

Why? Because I can save her, you can save her, we can save her......and everyone else with this disease. After all, we are so close. Right? I'm not delusional. Right? It's only a matter of time.....and we're going to make it....We're all going to make it.

We have to make it.

Here's to tomorrow.

All of my best. ~j

Let's talk about P-P-D....let's talk about....okay, okay, I quit.

I would be remiss if I didn't admit to my slight case of PPD. I havent moved from my house for anything significant (except the Parish Fair my sister dragged me to a couple of weeks ago) since the baby was born.

Doctor appointments here, doctor appointments there. Grocery store now and then....pharmacy, school to drop off Natalie, rinse and repeat. The CVS on the corner is my new best friend, along with all of the cashiers. I lost my ExtraCare card and I think they have my phone number nearly memorized from me being in there so often. They know me so well, in fact, that I no longer get the standard "Welcome to CVS" greeting.....No, no. I get the "Hey, where are all the kids?" or "Hey, how'd you make it out of the house on your own?" or "You look tired today." Strangely comforting as my socializing has come to a screeching halt.....

J has been working so much that we cant even catch a moment to talk...He walks in, I hand him the baby and go hide in the corner....Not really but I have fantasies....I wonder sometimes if people could see the play and hear the soundtrack of my life if they would commit me or turn it into a true screenplay......It is quite an interesting ride, if I do say so myself.

Natalie loves school, but her "wise beyond her years" and independent minded little self doesn't mesh with the robotic "yes ma'am, no ma'am" that kindergarten teachers expect. I'm waiting patiently on her first detention to arrive. We have made it through the first nine weeks with no "blue dots" (which apparently are bad) and no parent-teacher conferences. I'm proud.

As for Caitlin......Has anyone seen my little girl? She still shows up in pieces and parts, but generally this nearly 13 year old attitude monster inhabits her body. I can't wait until shes 25 and the monster departs.

Me? Im going to wear a hole in the corner of this sofa.....stare off into space.....and think of my next blog. Or clean up some puke (the baby is sick again), or do some dishes....and that laundry is calling my name....*sigh* With how exciting my life is, inspiration comes to me in the strangest of places.....and always when I am away from a computer. Figures.

Until next time. All of my best. ~j

Hello Blogosphere!

I've been feeling a little overwhelmed lately. So many things to say....always having to censor myself. I was trying to figure out why I have been feeling so uptight lately.....wondering how I could possibly say everything I wanted to say and not keep it in all the time and for the life of me, I couldn't remember how I had ever gotten by before......then I remembered.....I had you.

So life has gotten in the way, that's a given, but here I am. Again. I'm getting back to my roots.

 

Hello Isaac.

Mission: Fatten up Natalie

We all know that Natalie is extremely pancreatic insufficient. It's a battle we've been fighting since the beginning. Her last appointment was less than encouraging. Between her weight and her cough, it was not our best clinic.

I had let Natalie start to have more of a say in her eating. I was adopting the idea that if I made every meal an ordeal then she would NEVER want to eat....so I had slacked off some and I honestly thought it was going pretty well. I'm not going to sit here and blame myself completely, but I feel like I could have been more insistent on what and how much she was eating. However, since all of this I have gone back to my drill sergeant ways....only this time, I have Natalie actively participating.

Our goal? 50lbs
Our reward? A Chuck E Cheese Party.

Last week we gained a whopping 3 lbs. This week is going pretty well. No gains but no loss either. She's asking me to check her weight and her eyes light up as the numbers go up. It gives her a sense of pride and something to work toward....other than just keeping me quiet and off of her case.

So we shall see how it goes. Will keep you posted. Until then ~j

Natalie update: Pink Vests and Staph

Natalie had her original Vest for a couple of years. It was black, it was ugly, it was made poorly. It was that weird plastic cloth material. It caused to hoses to unravel and the air flow to get pinched off if she moved a certain way. It was a pain. Finally one of the clips broke and we had an excuse to get a new one. I called Hill-Rom and, as always, they were happy to send replacement parts to us.

Natalie was really excited to get her pink vest...it really makes treatment time easier. The hoses stay in place the vest covers her whole chest despite looking a little large and as a bonus, it has made treatment time much more quiet.

In the midst of changing all if this stuff around, Natalie developed a cough. I thought maybe The Vest was moving more stuff around, but after a week or so and a trip to Tulane the Doctors decided to treat her for her staph.

I was a little confused by this, I mean Natalie always grows staph. It's part of her normal culture, H flu and regular staph.

So I guess it got out of hand this time. We're almost through with this round of antibiotics. She seems to be better. We will have to go back and see If he wants to do a second round.

But for now, we're okay.....let the summer begin.

Losing it and TMI

I started with an IUD after Cooper was born. My incredible fertility is a blessing but....well.....I think we have enough.

Ever since that thing has been placed, I've been a little off. Mood swings. Crying spells. Anger. Hostility.

Does the IUD coincide with the prime timing for PPD to come crashing in?

Probably.

Maybe it's all in my head.

In talking to people about this problem I've learned some disturbing things about what I project into the world. I mean, according to my friends, I was already crazy. According to my nurses at the doctors office, I was already crazy. Really? Because I don't think so....*sigh*

According to my doctor I have PPD and need to be medicated...sooo...I guess we will find out who's right.

Until then, you can find me at the bottom of a bag of Hershey kisses.

All of my best.

Cooper

The reason my meltdowns don't last very long. He's such a good baby.

Suburban Nightmare

Anyone that knows me knows that you just don't come to me for anything sugar coated. So if you're looking for something sweet to read, you should probably leave right.....about.......now.

Let me start by telling you how much I loved my bright red Civic Si. It was a tiny 6 speed thing of beauty. Was it always clean? Hell no. I have kids. I have things to worry about other than cleaning my car.....but it was mine, and it was pretty, and i loved it.....endlessly.

But today.....today there is something big.....something ugly.....something grey in my driveway.....and it makes me sad.....and it makes me miserable. It is the simple embodiment of everything I hate about suburban life.....about what my life has become.

There was a time when I could park at the mall.....park at Wal-Mart.....any huge parking lot and never, never would my vehicle blend in.....I stood out....I was different. Today I am one of many.....they are everywhere....the same color, the same make, the same model.....maybe not the same year.....but they are there.....it makes me sick.

Call it a touch of PPD, call it what you want.....I just call it miserable.

Wake up, feed the baby, get puked on, pissed on, put the baby back to sleep, change my clothes....maybe.....bathe......sometimes......three kids at the least.....five kids at the most......dinner....dishes....laundry.....throw in treatments, meds for Natalie, fighting with her about food plus the baby's every three to four hour feedings in the mix of all of that along with all of that and the fact that the child still doesn't sleep through the night plus my 16 hour shift and Jason NEVER coming home from his job at AT&hell and you have one unhappy momma.

I am her. I am she. I am the one you see lugging groceries and 15 kids into her minivan......the one you think to yourself  "Gee, I hope she has help at home." or if you're an ass you think "Godd*&n, she shoulda kept her legs shut."

Caitlin got braces.

Natalie is on antibiotics for a staph infection.

Cooper has to have surgery.

Am I feeling sorry for myself? Maybe. Should I quit? Probably.

I just can't shake this one right now though.

I think the reason why is pretty clear too....you be the judge.

Everything happens for a reason.....right?

Just a random thought for a random day.....

Ive always been of the school of thought that everything happens for a reason. Things that you go through in life prepare you for things to come.....good and bad.

My sister lost her husband Easter Sunday. He was young, too young, 29.

I cannot find the logic in things such as this. My sister has lost a husband, my niece has lost her father....he has two children from a previous marriage that are without their Daddy. He was not ill, it was not expected. Its just one of those things, an accident.

If I hold to the same ideas...then this is preparing them, all of us, for something else that just doesn't seem right, something that just doesn't seem possible, something that just doesn't make sense.

I hope I'm wrong.

I don't need anymore lessons.

I don't want anymore lessons.

A New Baby, the Same Perspective.

Where do I start.....

Cooper is here. He made his debut weighing a monster 9lbs 8oz and 21 inches long. He's such a handsome baby. I know, I know. All mothers think that their child is beautiful, but he really is.....really.

I've spent the past nine months in a perpetual state of fear. Fear of the unknown, fear of having to gather my wits, gather my strength and possibly have to fight this CF battle with another child.

Perhaps that's why I couldn't gather myself enough to contribute anything to this blog, I'm not really sure.

There are some people in this world who have the privilege of being naieve when it comes to such things. I used to be one of those people. I was so sure when I was pregnant with Natalie that she was going to be healthy. The thought never crossed my mind that anything could/would possibly go wrong. The idea was obscure, foreign...it was something that you heard about happening to other people, people you barely knew or people on TV.

This time was different. J and I decided against in-vitro screenings. We were unified in our stance that it simply did not matter whether the child had CF, Down's Syndrome, or any other issue....we would not abort and learning of the disability in advance would only make an already stressful time much, much worse. All of this, not to mention that some of the tests only have a 50% accuracy rate.

Despite talking about the possibilities (a lot) and making a decision that I was totally on board with.....it didn't take away the fear. Every day managing the anxiety....but not just about CF....about everything.

You see once you've been touched by something like CF, you realize anything is possible, anything can go wrong at any time, any moment......You stop taking things for granted.

Miscarriage. Managing the fear. Trying to be realistic, trying to bond with a child growing inside despite the overwhelming fear that he's going to be taken from you before you ever get to see him, to hold him.

Am I eating what I need to? The vitamins are covering the rest, right? Wait, did I take my vitamin?

Are these vitamins good enough? They're over the counter....I mean I don't NEED prescription vitamins.....Do I?

Am I going to give my child some sort of issue because of all of the processed foods and artificial sweeteners because there was this article.....on the Internet......something about tumors.......Ugh!

Work, I have to work. Am I working too much? Am I going to hurt the baby? Its just exercise, right? Sixteen hours worth of exercise....Ugh!

And then suddenly, its over.....He's here.

His newborn screen came back negative. But it doesn't stop me from kissing his forehead after a long nap and licking my lips.....checking, just checking.....again. And it doesn't stop me from watching his BM's like a hawk.....waiting for any sign that I should do something, call the doctor....It doesn't stop me from weighing myself and then picking him up and weighing us together to make sure he's gaining weight instead of losing any.....just checking...because you know my scale weighs to the tenth of a pound.

CF has changed me.

Sometimes I'm okay with that.

Today I'm not.

A Kalydeco Hangover? Already?

I'm starting to see the hangover from yesterday's gushing of excitement.

96% of the CF community woke up this morning to the fact that nothing was different, nothing has changed. We started the treatments, took or administered medications, made our calorie filled breakfasts and packed our calorie filled lunches and realized that we are still fighting......

As happy as we all are about Kalydeco, we are all secretly wishing that it was our time....that we weren't the ones left behind to wait, the realization that we will continue to watch our children and our friends suffer while others are seeing the dawning of a new era........

There's nothing wrong with feeling left out. There's nothing wrong with wishing that it was our time. We are the majority.

Call me crazy, but I believe our time is coming.....sooner rather than later.

The only thing this does is push me harder to stay on top of CF, to try and stay one step ahead. Because WHEN our time comes, she's going to be as healthy as humanly possible. She's going to have a long healthy life. She's going to out live me. She's going to live out every one of her hopes, her dreams, her wants and her wishes......She has to.....she just has to.

So let's all take some Tylenol, rehydrate ourselves, and get back to it.....There's work to be done.

All of my best. ~j

Kalydeco is here.....

So, we all heard the news yesterday.....

The CF community is celebrating together, as one. We are one step closer to making each of our dreams for a cure, a reality.

I cried. I cried hard. I cried for those who we have already lost, for those who this break through comes too late. I cried for myself, for Natalie, because its not yet our time. I cried for the tiny G155ders who will know a long, healthy life, for the older G155ders who will have their lives changed....and for their mothers, who can breathe a tiny sigh of relief, even if it is just a tiny one.

Sitting in the car line waiting to pick up one of the kids, with Natalie in the back seat, scrolling through my Facebook on my iPhone because of the endless wait, I was bombarded by links about the news. I called Natalie's dad, he couldn't even understand what I was saying. I was a blubbering mess. Natalie was oblivious....her mind occupied with her Lalaloopsy dolls.....but I just kept looking back at her.....so tiny, so frail, so pale, with her dark circles under her eyes......All I could think was, "One step closer, baby......We're one step closer."

So close that sometimes I think I could reach out and touch it.....but so very far.....

Natalie's cough is a reminder.

We aren't done.

We have so much more to do.

But today is more than just one drug for 4% of the CF population.....its confirmation that our work, our fundraising, our passion and our tears are not in vain......it's working....we are close......we just have to keep going.

It's my house and I'll cry if I want to.......

January has gone as quickly as it came.....with it came our yearly round of January antibiotics. We are ever so grateful that it was just an URI and ear infection that was the culprit. Natalie has been extraordinarily healthy for the past few months....nothing has come up that wasn't fixed with a few extra treatments. I was concerned that with her being in school and her exposure to all kinds of yummy (ugh!) things that we would have a hard time this year.....however, things seem to be going along fine, and I am relieved.....so very relieved.

Caitlin is doing well. Her grades are excellent, her attitude leaves something to be desired at times, but she is nearly twelve and her life is changing too....hormones, a new baby....I cut her slack, maybe more than I should, I'm not really sure.....I cut her as much as my sanity will allow.....I've been where she is......I understand more than she realizes.

Life is hectic, life is stressful, life is....well....life.

I have yet to become accustomed to all of the changes.....and they are everywhere....there is no safe haven.

I am fat.

I am lazy.

I am moody.

I am tired.

I am hormonal.

I worry all the time.

I cry at TV shows.

I have unrelenting heartburn.

My insides are a punching bag.

I am 30 weeks pregnant.

If I get up to go to the bathroom one more time, I think I will cry about that too. I cant pick out a baby name to save my life and that makes me feel guilty, which makes me want to cry. We have nothing ready, which Ive already cried about. Did I mention that I cry a lot?

Now......those of you who know me, know that I am not really a cry baby. I am more of the "suck it up and move on" type of girl. I was more emotional when I was younger, however, I found that it did not serve me well.....it seems that I am making up for lost time.....exercising those unused tear ducts.....*sigh*.

This is actually another excuse that I have made up not to come here.......I am so freaking tired of crying and listening to myself bitch that I really didn't want to have to listen to it again......in my head.....and then read it....

There is part of me sitting here telling me to delete this.

Instead I'm going to hit the publish button.

Hope this finds you all well.

all of my best ~j