Thursday, July 25, 2013

Thankful Thursday: Ice Cream & Cloud Cover

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 time with family and family friends. We have been able to spend A LOT of time with my family and some great family friends this week. We all have such a great time together and I am blessed to get to spend time in their presence.

I'm thankful for rain. We are on the east coast and have actually gotten to see some rain while here. It is freakin' awesome to see rain. I miss it in AZ.

I'm thankful for ice cream. On this vacation I have had ice cream almost every night. Who wouldn't be thankful for that?!

Ronnie's List:
I'm thankful for banana splits. I haven't had one for a very, very long time but for some reason have been craving one lately. Last night I capitalized on my desire meeting the perfect location to order such a tasty treat. It was incredible!! (Ice creams: Chocolate Marshmallow, Banana Fosters, Kohler's Creme Doughnuts. Toppings: Hot fudge, Oreo cookies, Peanut butter cups, whipped cream, cherries)

I'm thankful for a responsive CF team. I came down with a little UTI and slight exacerbation/cold while out east that required some intervention. I had a response from my doctor within minutes of sending him a message. He called a script in for me and I picked it up within the hour. Feeling much better now!

I'm thankful for cloud cover on the beach. I'm not one to sit in the sun all day, but I do like being on the beach. So for me, sitting on the beach during a cloud covered day is just about as good as it gets!

So, what are you thankful for today?

Wednesday, July 24, 2013

I'm Fighting For...

**Reposted from August 2010**

Quite often, I'm very fortunate to be asked questions by you guys that really make me think and evaluate where I stand on a particular subject. The following exchange that I had with a super awesome cyster and fellow CysticLife member was no different. We've had some tough goings lately in our little community and everyone has the right to, and does, react differently. Thank you for challenging me on this topic and really making me think about where I stand.

Message: Hi Ronnie, It's been a while since I have been keeping up with cystic life. Some of the reason is because I am busier now with Colton being out of school for summer and the other part of the reason is I get the blues. I am an optimist and a realist so I have great faith that I will live a long life, but also being a realist I will have moments of panic and fear at the thought that I know what this disease does to people and how fast something can go wrong. So I have a question for you I didn't want to post openly, do you hear everyone's story's, sad and inspiring and not get blue? How do I find a balance of being connected to the CF world without letting the sadness of some of it consume me? I put it like this to my grandma the other day, I can handle myself having CF it's my life I don't know any different, but what gets to me is that babies are still being born with CF and have to suffer and fight the battles we have been fighting our whole lives, that's what makes me sad, and I know a lot of CF'ers say the same thing about not knowing any different but as a mother seeing a child be affected by this disease is heartbreaking to me. It inspires me to do fundraising but it doesn't seem like enough. I sometimes feel we are being withheld from a cure because of the pure business of money making for drug company's. I'm sorry if I used this message to ramble or wasted your time, but I just wonder how you find the balance?
Response: So yes, I certainly read about and talk to many parents who have lost their children to CF and I myself have lost a handful of close friends. Whenever this happens I generally have the same reaction:

Compassion- I of course feel very sad for the family, but it is followed quickly by my next feeling;

Relief- I'm just so happy that the fibro or cyster no longer has to endure his or her pain and suffering;

Motivation- The fact that right now everyone born with CF dies with CF motivates me beyond no end to never stop fighting for awareness. At the very least, I want every person in this world to know what's killing my friends;

Self-reflection- I then think, am I doing everything possible to put myself in the best position to prolong and even possibly avoid the feeling of loss and despair for my family?;

I kind of look at our CF journey like this...we're all driving a car flying down the highway. Just the mere fact that we're driving in the car increases the chance that we'll get in an accident and die, having CF increases the chance that we'll get sick (have an accident) and see an earlier death than people not driving cars (non-CFers). Now, the question becomes, what do we do when we see a bad accident on the side of the highway? Do we completely stop our car and put ourselves in harms way? Do we see the accident and say a prayer for the people involved?

Do we slow down and hope nobody hits us from behind? Or do we see the accident, say a prayer for the people inside and then use it as a reminder that we better stay focused on the highway? We all know that if you focus on the accident for too long, you will definitely get in an accident yourself.

Now, you could say, "well what if I don't want to take my eye off the road and just drive (not be involved in the community)?" I would say that is a personal choice and one that many within our community make. For me though, it's a choice that I won't make. I like to see everybody else's car on the highway, how they drive, how they take care of their car, what color it is, who's inside, etc. I think we can really learn how to drive our car on the highway if we watch others around us drive theirs.

And yes, we're going to see some accidents, we're even going to see some accidents that result in death, but we're also going to see a lot of cool cars and meet a lot of great drivers. We're going to have the opportunity to meet some fellow drivers on the side of the road and let them ride in our car for a bit until they get a new one. Heck, we may even be driving a tow truck at the time and be able to carry them along for awhile.

As I look back at the highway I'm driving on, sure I see a lot of wrecked cars and tire tracks, but I see many more cars to the right, left, in front and behind me traveling just as fast or faster than I am. And if I see a wreck, I'm always willing to pull over and see what I can do to help, but I know that I'll have to get back into my car soon and drive.

Edit from Ronnie: Some of you may have just read that and thought to yourself "that sounded really insensitive". To be honest with you, when I read my words over again, if I were an "outsider", I would probably think that too. But for those of you who know even just a little about me, you know that I will do anything and everything for absolutely anyone in this community. My heart breaks every time we feel a loss, but it doesn't only break for the dead, it breaks for those of us still left here on earth. That's who I'm fighting for. I'm fighting for Josh. That's why I wake up everyday with a smile on my face and make sure that at least one more person in this world will hear the words Cystic Fibrosis. I'm fighting for Sara. That's why I thank God for her every morning. I'm fighting for Emily. That's why I will not stop until CF is a thing of the past. I'm fighting for Mandi. That's why I will never stop taking care of myself and loving those around me. I'm fighting for Kat. That's why I will do everything in my power to reach those in the CF community early enough to make a difference. I'm fighting for Jamie. That's why I try to answer as many questions as I can. I'm fighting for Kate. That's why I try to bring hope to the parent's of CFers. I'm fighting for Jesse. That's why I try to show the "normal" what our normal looks like. I'm fighting for us. That's why I was put here. That's why.

Monday, July 22, 2013

Toddler Travel Tips

I should probably preface this whole blog post by saying that I am not an expert when it comes to traveling with a baby/toddler, but we recently had someone ask us to post tips on the blog, so I'm doing just that. With that said, please leave additional tips in the comments section if you have any!

Ronnie, Mckenna and I headed out to the east coast with my parents for a family friend's wedding in Delaware. I was a little nervous, to be honest. Mckenna is the typical toddler. She doesn't stay interested in any one activity for longer than 34 seconds (ok, I'm exaggerating, but not by much) and she cannot sit still. She rarely will sit still to even watch a TV show or movie (she's actually never sat through a whole cartoon...even fast forwarding through the commercials). The only time we can get her to sit still for a "long" period of time is in her high chair, with an activity. So with that here are my tips:

1) Bring new toys - When you think you've packed enough toys to last a lifetime, pack a few more. Before the trip, I went and bought some new toys for Mckenna. I tried to find cheap little things that I didn't care if they got lost, so I went to Michael's and a dollar store. I got a little mini baby doll, some squishy balls, little people and animals that walked when you wound them up, a sticky spider, you name it. I then bought two little bags that zip at the top and split the knick-knacks between the two bags. This way I could hand her a little bag to play with by herself for awhile. I figured the zipper would take some time, then tearing through each toy would take some time. I actually handed off one of the goodie bags to another mommy on the plane that was struggling with her little man (I'm pretty sure she was clever and flew during his nap time...however, he didn't nap!) I also bought some fun "activity" type toys, like giant beads to put onto string as a necklace, crayons to color, and a new sticker book.

2) Fly during a good time - If little johnny boy is always cranky in the mornings, that would be the last time I'd want to be on a plane. Mckenna doesn't have definite cranky times anymore (she used to always be fussy in the evenings as a baby), but she is more likely to be cranky in the afternoon than she is in the morning. So we flew in the morning, and through her nap. I was hopeful she'd eat up some of the flight with a nap, and she did. Just know, flying through naptime could backfire if they don't nap. The poor mom on the plane with us had it happen and neither of them looked very happy! Mckenna isn't a sleep-anywhere-nothing-can-wake-her-up kinda kid, so I didn't know how she'd do, but thankfully she slept a little.

3) Bring a change of clothes for everyone - I packed a change of clothes for Ronnie, Mckenna and myself. We thankfully didn't need them for ourselves this flight, and just needed to use the change of pants for Mckenna (I left her in the same diaper too long and it leaked), but we did have one trip where Mckenna spilled my coffee over the both of us and I was glad we had a spare.

4) Pack extra diapers - We haven't had to use them, but I always feel good knowing we have plenty of diapers to get where we are going, and usually use a bunch of the spares when we get where we are going, buying us extra time before having to get to a store for diapers.

5) Load up on snacks - What better time to teach your child to entertain themselves with food. Ha! I kid. But seriously. We flew through lunchtime, so I had a sandwich, raisins, pretzels and fruit pouches (is that what they're called?) I did read somewhere that you should steer clear of too much sugar, as it could backfire with a hyper kid. I took their advice.

6) Get them their own seat - This one isn't always possible. Flights can really vary in price, and sometimes this just isn't possible (or reasonable). This was the first flight where we booked Mckenna her own seat, and holy smokes was it worth every cent. We brought her car seat on board (we then used it in our rental car as well). Mckenna isn't a huge fan of her car seat, so I wasn't sure how it would go. But I figured it was better than no car seat. Mckenna is "trained" to use her car seat. She knows what it is, how to sit in it and that when she's in it, she's in it until we say it's time to get out. Mckenna is not trained to use a plane seat. All I could picture was the climbing, twirling, jumping, squirming, etc that would happen in a chair twice her size with no harness holding her in. It worked beautifully. We actually let her out of it only to go to the potty. I figured if we let her out other than that, all we would hear would be, "out, please."...for the remainder of the flight.

7) Gate check a stroller - We went back and forth on whether to bring our stroller each time we have flown with Mckenna. Each time we are glad we have it. It helps to have a place to strap Mckenna into, it can hold a bag or two, and it can help us move that much faster if needed. But even more than at the airport, it's really nice to have it when you get to where you're going. We always bring our jogging stroller, that way we can run when we get there.

8) Put on a smile - You will be everyone's worst nightmare when they see you walk on the plane. Sure there's a grandma or two who will smile and wink at you as you drag what looks like all your worldly belongings down the aisle, but for the most part, there's a look of fear in your fellow travelers' eyes. When you find your seat, give huge smiles to all your neighbors and assure them you'll do all you can to make the flight as painless as possible for everyone. When the going gets tough, throw an extra smile their way and start passing around your snacks.

So far traveling with Mckenna has always been better than I think it will be. But I'm certain at some point there will be a flight from you know where!