Wednesday, October 24, 2012

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 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 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.

Monday, October 22, 2012

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

Friday, October 19, 2012

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, 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.