Thursday, July 18, 2013

Thankful Thursday: Awesomeness & Secret Handshakes

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 family. I absolutely love spending time with my family. I enjoy all of them. Their different personalities. Their strengths. Their quirks. I am so thankful I get to spend so much time with them.

I'm thankful for secret handshakes. Mckenna and I now have one and, well, it's pretty awesome.

I'm thankful for Ronnie. There are many things about Ronnie that I love and that I'm thankful for. But today, I'm thankful for the way he builds me up. He always makes me feel like I'm the most awesome person in any room. And while I'm never the most awesome person in a room (unless, of course, I'm alone in that room), I always know that in his eyes, I am. And I love that!

Ronnie's List:
I'm thankful for a clever wife. Mandi mothers and wifes(?) like she's been there before. I don't know how she's such a natural, but I do know that I love it. She just makes life so much easier for Mckenna and I that it's not even funny. I would list out a ton of examples, but I don't want to be giving out her "secret sauce"!!

I'm thankful for mobile hotspots. We're currently at a location with no internet. Generally, that would cause a slight panic for me since everything I do is online, but fortunately, our phones can act as an internet router in a pinch. It's not as fast, but it does the trick.

I'm thankful for God's creation. Whenever I travel, I'm always reminded how diverse and wonderful all of God's creation is. Where I come from, there aren't too many colors, so I can easily forget how lush and vibrant nature can look. It's been nice to see a little bit of "life" in the yards around us this week :)

So, what are you thankful for today?

Wednesday, July 17, 2013

Here's Why I'm Open About CF

**Reposted from May 2012**

I recently posted a question about CFers and being secretive about their disease. I also asked why some consider their numbers (PFT's) to be a private matter. After reading through all of the responses, I figured I would post my thoughts on here concerning this subject. -Awareness is key. I don't shout from the mountain tops that I have CF, but I also don't hide it. The more people who know about CF and it's affects, the better. Imagine if everybody knew what CF was and that you can't catch it? Would children need to be so ashamed or get teased with comments like, "staying away so you can't get it"? Knowledge is power in every circle of life. The more people know, the less ignorant they become. For ME, and I stress ME, I dedicate my life to spreading awareness so that hopefully future generations won't ask the question, "What is CF?". It would make ALL of our lives easier.  

-If people "look down on you" for having CF, why in the world would you want them as friends anyway? It's not something that I state with my name when I meet somebody, but I certainly bring it up quickly if I see any type of relationship forming. Often, CFers with larger support systems seem to be healthier. An easy way to bring it up with friends (without actually bringing it up) is to set your digestive enzymes on the table before you and your friends dive into a meal. That will ALWAYS get the conversation going.  

-Generally speaking, we only hide "skeletons in our closet" if they are BAD things. CF may be a horrible disease, but it's not a character flaw. People will often react to CF by the way we present it. If I'm very secretive about it, then people will assume that it's some terrible thing that I don't want exposed about myself. CF plays a small role in who I am, but it certainly plays a role. For me, I think it has had a positive effect on who I am and many of my friends and family members have said the same thing. If you spin CF into a positive aspect of your life, friends tend to gain respect for your tenacity and perseverance in facing this disease. You don't become the "sick one" of the group, you become "the warrior".

-A common response I got was that people wanted to be seen for who they were and as an individual yet they didn't want to be seen as "different". To me, this seems like competing answers. Bottom line: I AM different. I have a different hair color than some of my friends, I weigh a different amount than most of my friends, I'm uglier than ALL of my friends, we all don't like the same movies, some of us are smarter than others in the group, and oh yeah, I have CF and they don't. CF does make me different AND it makes me an individual. Many of my friends come to me in hard times cause they've seen me navigate though these different challenges I've had in my life. I wear that as a badge of honor. I'm thankful that CF has molded me into a person that my friends would seek advice from. Would I be that way without CF? I can't say for sure, but I doubt it.

-When it comes to PFT's I think it's VERY important that we share those numbers with each other. If your PFT's are higher than mine, I want to know what you do differently than me. Maybe it's pure luck and you have a superior genetic code when compared to me, but what if it's not? Aren't we all willing to do ANYTHING to improve our quality of life? When I see someone my age that has higher PFT's, I admit, I get a little jealous. First I think, good for them, that's awesome (and I sincerely mean that), but then I think, "I wonder what their CF story is and what they do on a daily basis that is different from me?" I get it that some of us can do EVERYTHING right and still be very sick. Is there anybody out there though that would argue that TRYING to do everything right will MAKE you sick? Of course not. Each of us needs all the help/tips/tricks that we can get our hands on. Personally, I want every CFer to be healthier and happier than me and if I can provide them information on how to get the done, then that's exactly what I will do. We're all part of an exclusive club here that only has 70,000 members world wide. We all play for the same team. Doesn't it make sense that we all share our playbooks?

Monday, July 15, 2013

Kids Say the Darndest Things

Mckenna has always been a talker. We've post several times about how vocal she is. Well those verbal skills make for some serious laughs from time to time. The things she says and the way she says them crack us up. Here are some favorites:

1. "Aye a mimi"- This is her version of "wait a minute". She doesn't say it to tell us to hold on, but rather, when she's doing something questionable. When I catch her doing something I'm not sure I want her to do (like unzipping pockets in my purse, looking in a cupboard, etc), I say, "wait a minute" in a silly voice. So now, in a silly voice when she sees me first see her doing something questionable, she says, "aye a mimi".
2. "mm hmm"and "okay" - Apparently when I list out the steps of something we are doing, "ok, let's get your shoes, put on our hat, get your milk, and get in the car" (all said as I'm doing each thing) I guess I must say, "okay" or "mmhmm" as I do each thing. Well now Mckenna says, " hmm" " hmm" as she tells me a list of things she'd like to accomplish. And sometimes I think she uses it thinking it will make her request more likely. Like then it's not a question, but something that IS happening. " hmm" It cracks me up!
3. "OTAY" - Mckenna has realized it's not just what you say, but how you say it. Sometimes when I say something and follow it with, "okay?" she says in a silly voice, "OTAY" and smiles. It's cute.
4. "Oh Memma" - Mckenna says her name, "Memma". And sometimes when she does naughty things Ronnie or myself will say, "Oh Mckenna"...which she then immediately parrots, "Oh memma!"
5. "Du, Ee, Aye" - This would be Mckenna for "one, two, three". She doesn't know how to count, although she does fill in the blank correctly from time to time if you say, "one..." she will say "two" or if you say "one..two..." she will fill in "three". However, when she wants to indicate to you that she is counting (like counting to three during hide and seek or before jumping off the edge into the pool) she says, "Du, Ee, Aye"...sure, that sounds like "one, two, three," right? Ha!

I could go on all day, but those are some of our favorites right now. I love that I can get insight into her little mind and see her personality come through in her words. I'm sure it will only get more fun from here!