Chase

I was brought to my knees this morning. 

I never met Chase. I've never met his mother, but we have known of each other for years. We are Facebook friends but still strangers who share a common bond.....cystic fibrosis.

The news of Chase's passing hit hard. It hurt. I stepped out the front door of my house, called my stepmother, and hit my knees and bawled like I haven't in ages.

It's not fair.  It's not right.  Why?

Being the parent of a child with CF is much akin to skating on a frozen pond. It's beautiful, it's scary,  it's not as smooth as skating in a rink, but fun just the same. The only problem is that the ice is thin,  you never know when it will crack, you never know if or when you're going to fall through. You never know how it will end.

I remind myself of what Natalie's specialist told me on her first visit. "She will grow. She will live. She will need a college fund."

I hope and pray and dream that I get to have the privilege to spend every last dime I have putting her through college.

My love to the Curry family today, and always. 

First Grade

Here it comes. First grade. How time flies. Feeling hopeful. Feeling anxious. Obviously, she's feeling ready. 

I don't know where we're going, but this is where we are.

Just a picture from today. Just a moment to be grateful. So many lives lost lately.  Unplugging from the demon FB is looking more and more like a good idea.

Errands.

Trash TV at the tire shop... I think this is the only place it's acceptable to watch this garbage.

Mardi Gras 2013

Creedence Clearwater Revival - Have you ever seen the rain?

This one makes me smile.

Panic

I've had a lot of people asking me the "How do you do it?" question lately.

I've realized that the more my friends now about me, the more they pity me. I don't want anyone's pity.

I've noticed lately that a lot of the older CFers are male and have done some reading up....the stats are less than encouraging.

I have moments of panic which lead to suppression and denial.

My suppression and denial lead to emotional outbursts at inopportune times.....like when discussing my job with my supervisor. *sigh*

I feel crazy sometimes.

I have a world of emotions chasing me around all of the time. Fear, determination, denial, hope, hopelessness, sadness, longing......I just keep moving so they don't catch up. I worry what will happen to me if they ever do.

Natalie has MRSA in her lungs. We have been on Bactrim for three months. As a nurse I understand what this means. As a mother, I close my eyes, put my head down, make sure I do all I can to keep her healthy, and put one foot in front of the other. One treatment, one med, one day.

 I am grateful that Jason takes some of the pressure off at night when he gets home. He helps me get the day finished. I wish he were home more. I wish I didn't feel like I needed so much help. I used to feel invincible....or at least I could pretend. I don't even try to pretend anymore. I am weary. I am tired.

No one realizes the life we lead as CF parents. We cling to others for hope, for advice. But with this comes an enormous pain that we share with every loss, with every setback.

Sometimes I wish I could leave it all behind.

But here it is. Its here to stay.

One foot. One step. One day.

That is all.

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.