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

Fail!

Okay, so I've already failed at the post every day. I have a really good reason though. The girls have been in a Club Penguin war for the past two days, therefore the computers are tied up....I'm posting this from my iPhone. Sad, but true. Since its their Christmas vacation I'm being a bit more lenient with computer time and they've been apart for nearly a week PLUS they have to leave again tonight....sooooo here I am...posting from my phone so that I don't feel like a total failure, only a partial one. :) much love and happy holidays to you all. See you on the flip side. ~j

A blog post each day through the end of the year....

I'm trying to get back into the habit of being here, so I'm challenging myself to write an entry every day until the end of the year. Just a little disclaimer, weekends don't count....you already know why. Its not for a lack of time or a lack of caring that I haven't posted, I've just been so incredibly tired lately. Last night is a good example of why.

My other half has been away with training for work each week for the past few weeks, Monday through Friday. This wouldn't be so bad if I didn't work 16 hour shifts on Saturday and Sunday. So as of right now, we are working exact opposite schedules and he's not even home in the evenings. If he were home in the evenings, that would probably make things easier as well.......However, he's not....but I'm not going to whine about it......much. Getting to my point.....

When he isn't home, I don't feel compelled to get in my bed. Its almost more comfortable (especially lately) to just sleep on the sofa. So last night, as usual, I didn't make the trek to the bed.....I just stayed put. I finally passed out somewhere before the infomercials but after all of the good programming had come and gone for the night.

I got about two good hours in when the nightmares started. Nightmare, wake up, readjust, roll over, go back to sleep, rinse and repeat.

Finally at about 4 am I woke up in tears, sent a text to my other half apologizing for every personality flaw that had been highlighted in my head for the past couple of hours, cried for a while because I'm a wuss and hormones make me crazy and then decided that maybe the sofa was cursed for the night and stumbled to bed.

Cue Natalie.

Her cough wakes me up and I stumble back out to the kitchen, start filling nebulizer cups and find a comfortable seat next to her so the whir of the nebulizer machine can put us both back to sleep.

Sleep. Cough. Wake. Reposition. Sleep. Cough. Wake. Reposition.

I think it's nap time.

All of my best. ~j