Friday, July 20, 2012

Just Another Giggling Video

Thursday, July 19, 2012

Thankful Thursday - Teeth & Salmon

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for teeth...kinda. I'm thankful that Mckenna is getting some teeth. She has an adorable little one on the bottle left and is working on the one on the bottom right. It is SO cute to see a little flash of white when she smiles now. I am just so thankful that I get to watch her become a big girl. The only catch is that it's been a couple long days around here as a result - in fact, I'm writing this at 4 AM!

I'm thankful for family. My parents are still in town and I can't get enough!! I love spending time with them and wish they didn't have to go back to Singapore on Saturday.

I'm thankful for new recipes. We made salmon the other night and it was delicious. I totally love when we try new recipes and they actually work out and become a new favorite. I'm also so thankful that we are blessed enough to be able to get good, healthy foods!

Ronnie's List:

I'm thankful for a good sized dining room table. When we were buying furniture and stumbled upon our dining room table, we figured that they had placed the wrong price tag on it. Compared to everything else that we had seen, it just seemed to big and nice to be as cheap as it was. Ends up that it was no a mistake and we were able to pick up a table that can seat 8 comfortably with the ability to add at least 2 more with the leaf. 

Speaking of the dining room table, I'm thankful for family dinners. Wether it's just the three of us, or we're fortunate enough to have family over, we love cooking up a great meal and sitting down around the table. We recently cooked up salmon, quinoa and corn on the cob for Nana, Uncle Smeags, Uncle Josh and Aunt Kissy. 

I'm thankful for 10 minute tidies. We've been trying to be better about picking up after Mckenna goes down for the night, and it's amazing what a 10 minute tidy can do. Granted, it's 20 minutes of man-power, but nevertheless, it makes a BIG difference. There nothing like waking up to a picked-up house...even when you know it won't look that way 2 minutes into the day :) 

So, what are you thankful for today?

Wednesday, July 18, 2012

Are You Selfish? I Hope So!!

When most of us think of being selfish, we think of only doing activities or making decisions that benefit us personally. However, I'd like to look at it from another way today - maybe we're being selfish by not putting ourselves first when it comes to our health? Allow me to explain.

Actually, let me back track just a bit and share with you the note that a friend wrote me that spurred on this blog...

"I just wanted to say THANK YOU for the blogs you do. I was reading a lot of them today and it was a real eye opener. By reading them made me realize that its time for me to have "ME" time. I need to do EVERYTHING that I am capable of and control of in order to stay healthy. Thank you Ronnie! :)"

So when you read that, what do you think? Does saying "time for me to have "ME" time" sound selfish to you? I can certainly understand if it does, but to me, this is one of the most selfless statements you can make. Notice what she said after that statement - "in order to stay healthy". That my friends is what this is all about and why many of us need to rethink what is selfish and what is not.

I happen to know that the person who said this has a loving family, a ton of friends and a husband who wants nothing more than the best for his wife. When we have that many great people around us, it's hard not to think that the more time we spend with them, the more we are showing that we love them. But here's the question, and one I would suggest asking your loved ones, is it better to be "around" with your family, or would they rather have you "there"?

I would bet that most families out there would answer this question the same way. It's great to have us around, but man, they absolutely love it when we're actually there, healthy and engaged

I used to think I was quite the family man because I was able to spend so much time with my brothers, parents, cousins, aunts, uncles and everybody in between. Heck, I had so much time on my hands that I was also able to always be around friends, poured myself into work, volunteered at church, volunteered at the homeless shelter, went on a few dates, spoke at some fundraising events - it really seemed that I was squeezing everything there was to squeeze out of life.

I was making a big mistake however, all of that "life" was coming at the expense of my health. All of those things I listed came before my treatments on the totem pole of importance. I thought I was showing everyone how much I loved them by always being around and giving them my time, unfortunately, I had little time to love myself.

So given the choice, would my family and friends choose for me to be sick and around or healthy and there? Wish I would have seen it so clearly at the time, but I was being way too selfish by not being selfish - they would MUCH rather have me healthy and there, even if it meant I wasn't there as often.

I hear people say that you have to "want it for you". Nope, you don't. You just have to want it bad enough for someone, wether it's you or not, that you're actually willing to make a change.

That someone for me was and is Mandi. I have become much more selfish with my time since we met, and she wouldn't have it any other way. In fact, she demands it. She knows first hand how things were when I didn't put my health first - it wasn't pretty for her and it wasn't pretty for me.

So I challenge you, start being selfish when it comes to your health and the time you spend on some "me". 

In the end, that "selfish" act may be the most selfless thing that you ever do.

Tuesday, July 17, 2012

My CysticLife "Job"

Here's another question I get asked quite a bit, and until now, have kept the answer between me and the person asking the question. I figured that it's asked enough though that I should just put something here on RSBR in case any of you are wondering the same thing.

I always hesitated talking about this publicly, because I don't want any of you thinking that I'm somehow self-promoting or asking you to give me a pat on the back. I don't want any of you however ever to think that I have any financial interest in bringing CysticLife to the community and want to make clear my motives - to make an immediate impact on the lives that were born with the same genetic disease that I was, no more, no less. Anyway, hope this clears some stuff up for some of you.

For you. CL is your "job" even though I feel sure you don't look at it this was. How do you make money from this? Do you take donations ? I'm sorry if too personal. You help so many with all of your knowledge and your responses are so quick - I was just wondering if donations are what keep it going?? 

CL is my "job" in that I devote well over 40 hours a week to it, but I do not make a single dime. In fact, my family "lost" money last year running CL.

CL has a for-profit arm (the website) and a non-profit arm (grant program and educational materials). Every dime we make through the website, promoting surveys, videos, etc, goes directly to our web developers salary. If we don't generate enough business to cover his salary, then we cover it.

For our non-profit arm, 100% of the money taken in goes to support our educational materials and grant program. We don't even allow any of the money to be used to run CL. We do take donations, however, due to an issue with our 501c3, we've had to freeze that for now. I pray we will be back up and running shortly.

Most of our donations came from private donors who appreciated what we're doing. I'm hoping that continues so we can continue supporting the CF community.

Monday, July 16, 2012

Mckenna Monday: Fun Weekend with Nana and Papi

This weekend we stayed at this house that I recognize, but it's not my own house. Two super cool people live there. Their names are Nana and Papi. I'm pretty sure they are my mommy's mom and dad, because Nana looks just like a mommy, and Papi looks just like my Uncle Josh. And that's how it works right?

I love getting to spend time with them. They are both so fun. Nana looks and sounds like my mommy, plus she does lots of things that my mommy does, so I warm up to her really fast. She makes lots of goofy faces, and does lots of funny things, so I laugh at my Nana more than anyone else. She also talks to me a lot, so I talk to her a lot. It's fun. I tell her stories and tell her all about what I'm doing. She also lets me try yummy foods. She likes lots of sweets, and if I look at her with my big blue eyes and get real close to her, she will give me little tastes. Whenever I can I crawl over to her and say hi! I kind of have figured out how to say "nana" but it sounds a little like "nini" I can't quite get it down.

My Papi is super cool too. He is really goofy also. He makes all sorts of fun faces and sounds. One of my favorite things about Papi is he has this fun toy that he lets me play with. It's this flat, rectangle thing that has a screen. I think it's called an iPat or something, so I pat it a lot. He has all these fun things on there that have animals and they make noise and when they make the noise, he makes the noise and we both really like it. He also takes me on adventures around the house. He carries me around the house and shows me all sorts of fun things.

I really like being at their house. There are so many things to explore and fun things to get into. They have a big bathtub outside, which is cool. I guess when you take baths outside you wear a special outfit, instead being a "nakey girl" as my mommy and daddy say when I'm in the inside tub. Plus, the water is colder in the outside tub than inside. But I like the outside tub because it's so big, and I get to float in this big lady bug and Nana and Papi, mom and daddy, and Uncle Josh and Aunt Kissy all play with me in their special outfits.

Well, I gotta go play with my elephant. It has balls that shoot out.