Not So Bright and Shiny

I wanted to spotlight today follows the life of a little boy named Conner with CF. It's written by his mother Sarah and is called Not So Bright and Shiny. Sarah considers herself very blessed to have a boy like Conner and knows that she was chosen as a CF mom for a reason. They recently got back from a trip to Hawaii in which Conner got to experience sights and sounds that his mom could have only dreamed for him. I love happy and positive blogs from the CF community. Here is their journey in her words:

Trip of a LIFEtime

Gosh...I'm not even sure where to start. my heart is swelling with the love that was shown to us this past week, that will live with us our entire lives. There's simply too much to tell. The stories of generosity, support, and love from family and complete strangers alike. This trip far exceeded our greatest hopes and Conner's greatest dreams. Pictures really say it all, and we took, almost 900 of them on our own cameras. But the grandparents took more as well.

He saw whales, whales everywhere...he saw lava...he went in a helicopter, he went swimming with the dolphins and fed them fish, he received a lei greeting, he swam in the ocean and pools, he saw a hula show, he went to an authentic luau and saw the fire dancers, he saw his dad and mom do the hula on stage, he saw his papa attempt to blow a conk shell to start the luau, he saw what humidity does to his baby brothers hair (CRAZY!), he went in the cockpit of the hawaiian airlines plane and learned to fly, he got the pilots REAL pilos wings (not fake ones..his own real one), he saw a mongoose, he saw plenty of beautiful flowers, he saw black sand, he saw spinner dolphins and bottlenosed dolphins, he went on a whale watching cruise, he saw the entire island by helicopter, he joined the thousands of locals and travelers who write their name in the black lava with white coral rocks by writing out his name to be there for years to come, he had a Hawaiian pastor pray a healing blessing over him, he left his footprints in the crystal white hawaiian sand, he buried his dad in the sand at hapuna beach, he picked out gifts for his friends, he had time for lots of hugs and kisses for his family, he saw water as blue as he'd ever seen, he saw Gods beauty and grace everywhere, everyday, and every minute.

I can't even begin to say thank you to those who helped us get there by prayer, support, money donation and grace. Conner received over $530 from people we met on the island, when they met him and heard of his story and struggle. People were just so generous to our family. Their generosity made his wish of swimming with the dolphins come true, another persons generosity allowed him to buy the hawaiian airplane he had his heart set on, another generous gift allowed us to be able to go to the authentic luau, another gift bought us meals for the airplane and tonight for dinner just the 5 of us. he was able to get and do everything he wanted. Yet he shared with his brothers and family. His heart is so generous.

There simply aren't enough words in this world to describe the way I feel about this trip. The way we all feel about this trip. How greatful I am, how I am the luckiest woman in the world that I was chosen to be his mother, how blessed I am to be able to hug him and kiss him whenever I want to...to know he's ours, if even for just a moment longer.
No, I'm not a dancer, but to fulfill his wish of me doing the hula in front of an audience was a no-brainer for me. I got to see him smile because of that. Who cares that I looked ridiculous. To see the smile on his face for getting to bury his daddy in the sand which he's been talking about for weeks was heart warming.
Yes he struggeled a bit to breathe, sure he wasn't feeling very well for most of the trip, and of course he missed out on some amazing island food because he was too ill to eat but oh my gosh...he did it! what an amazing journey. He got to do it! and he LIVED every minute of it to the absolute extent of his abilities. He cherished it. He loved it.

there's simply just too much to say, too many stories to share. and simply not enough time or even the words to speak it aloud...just know that God was ever present on this trip, I felt him from the tips of my fingers to the tippiest of my toenails. He made this possible. He brought these amazing experiences to reality and planned them out so perfectly. because he loves us. because he's there for us. because thru all our struggles these past years he's proven to us without any doubt that he infact, will NEVER leave us. and we, as a family will never be the same again.

simply amazing.

If you get a chance today, stop by Sarah and Conner's blog and say "aloha"!

We Sure Do Have a Great Life Don't We?

I know that Thursdays are the days to be thankful around RSR, but I've felt so blessed this week that Monday is the new Thursday...at least this week. Here's a little look into all the great happenings this last week that I am so excited about.

One HUGE blessing this week was the opportunity to spend some time with my dear friend and maid of honor, Lenore. Lenore and I went to high school together and we have remained great friends through college. We went to school just far enough apart (I went to Syracuse and she went to America) that we never saw each other. I saw her for a few hours last year, but that wasn't nearly enough. As you can tell, this visit was much needed and we had a great time catching up. She is one of the most amazing people and it was so incredible getting to spend time. She also had her boyfriend, Mo, with her, and it was awesome to get to meet him. He might be one of the only people I've ever thought was good enough for my Lenore :)

Another HUGE blessing this week was the launch of CysticLife and the incredible support we've received. We had a great week in terms of numbers, a ton of unique visitors, tons of page views, and over 570 new members signed up. The numbers are great, but I can honestly say there was

something else I noticed and realized that just warmed my heart. I haven't been a part of the CF community for that long, and I knew that it was a great group of people, but this week brought my understanding to a whole new level. The feedback and support everyone offered us was incredible. We didn't have too many glitches, but any issues we had people were willing to work through with us. Some people had spent hours on something, and then lost it due to a glitch, and instead of being frustrated and upset, they just tried again and told us it was ok. I can't tell you how much anxiety we had over releasing the site to the wolves and I can't tell you how incredible it has been thanks to this great community. I know a lot of you were over on the site, and some of those people that just hung in there with us through the kinks, so I wanted to say thank you. I feel so blessed to be a part of this community!

The wedding plans are coming along also, which is obviously exciting and feels like a huge blessing. As you know, I have the dress and we had the venue picked. This week we have met with an invite person and have samples on the way, looked at bridesmaid dresses, set up an appointment with the florist, got the contract signed for the venue, so we can move forward with tastings. It feels like it's all coming together, and the best part is, I've been so wrapped up in launching CL, I haven't even really been stressed about it (which if you knew me, and my affinity for worrying you'd know that was HUGE).

Life is good. Plain and simple. Sometimes I get caught up in all of the "stress" and to dos, but this week I sat thinking about how grateful I was for the last week and just life in general. Apparently Ronnie was feeling the same way, as we sat in my kitchen, he gave me a hug and said, "we sure have a great life don't we?" So, so true...Life is good!!

How Can I Simply Be Abby?

I often get emails asking for my opinion or advice on different topics surrounding the life of a CFer. Most of them I will answer directly and you guys never see them. Once in a while however, I get a question that I believe needs to be answered and addressed by the community. This is one of those times. I received this email yesterday by a high school girl named Abby (I changed her name for privacy sake). I know that many of us have been in this exact same position before and would have killed to hear the advice of other "older and wiser" CFers. I figured that the more insight she had on this particular subject the better. I also have a feeling that there are about 1000 "right" answers out there. Let's come together as a community and help this cyster out! Please read this short email and respond however you see fit. Thank you.

I have one question today.

You've inspired me. I wanna make the change in my life, to not let CF rule who i am, I let it define me and who i am way to often. I just don't know how to become simply "Abby" now that I've always been "Abby with that lung disease" .

Suggestions on how to change it ?

So, what do you guys think? How do you have CF without being CF? Is there a way to be different without being treated differently? I really appreciate you guys taking the time to answer this question!!!

Great Opportunity for CF Awareness

Here's some of the things that I'm so thankful for today....

I would be remiss if I didn't acknowledge how thankful I am for all of those who have served in our great military. I have many family members who have served honorably (and continue to do till this day) and am humbled by the dedication they have to serve. My dad retired a Chief Master Sergeant in the United States Air Force a handful of years back and his retirement ceremony continues to be one of the most emotional days that I've ever had. I can say without a doubt, that I was more proud of my dad that day than I have ever been before. To see how many lives he had touched during his military career was truly breathtaking. So to all of the men and women who serve this great country of ours and protect freedoms that I take for granted every day, THANK YOU!!!

I'm so thankful for my positive support system that has grown online. I've always had great family and friends that have been there for me and root me on like nobody's business, but it's nice to feel all of love coming from parts of the CF community. Like all of my other fibros and cysters know, you'll never really get it, unless you're in it. The fact that I have so many of you cheering me on that have been there and feel what I feel means the world to me. You'll never truly know what it means to me and I only hope that I can support and inspire all you as much as you have supported and inspired me.

I'm so thankful for the opportunity that Mandi and I have coming up this weekend in Dallas, Texas. We've been invited to be the "CF Education and Information" czars at an event called the CF Concert Series. I just hope that when people walk away from that event, they'll know more about CF than when they came. And if things go really well, we'll be able to plant a seed in those people that not only make them feel compelled to learn more about Cystic Fibrosis, but to pass that knowledge on to friends and family. A cure for CF starts with awareness and we hope to be able to create much of it at this event.

Connecting to the CF Community

I think I’ve said this before, but let me say it again. Technology is amazing. I’ve met SO MANY CFers and their families since starting this blog and I feel so fortunate to have met each and everyone of them. I recently obtained a Facebook account after many years of stating that I “don’t have time for that”. Well now, a majority of my day is spent online so I was out of excuses. In the short time I have been in Facebook I have had a ton of conversations with others in the CF community via chat, email or wall-to-wall that I would have never of met otherwise. So thankful for that.

I’m also thankful for the time I was able to spend with Eric (Mandi’s dad). Fortunately we’ve gotten along right from the get go. We share many of the same personality traits and we seem to “bond” by ripping each other. I think he like me (at least I hope he likes me) because not only can I take it, but I can dish it too. He’s just a fun guy to be around and although he’s now 50 plus (just kidding Eric, I know you're only 49), I have a hard time keeping up with him. Now that he’s gone, maybe I can get some rest J

One more thing I technology, have you guys ever heard of a Slingbox? If not, seriously, it’s crazy, now let me explain. As I mentioned earlier, Mandi’s parents live in China. One thing that they miss is American TV shows, you know, the greats like “The Bachelor” and “Dancing with the Stars”. Well yesterday we took care of that little problem by purchasing this Sling box device. Now, I took us about 12 hours to figure out how to set it up (I’m serious), but once we had it cranking, we soon realized how worth it that was. Now, from anywhere in the world, you can tap into their TV and watch it live over the computer. You can also control the DVR to record new shows or watch the ones that are already recorded. As we speak, Mandi’s mom is catching up on “Modern Family”. Which, if you haven’t already seen it, I HIGHLY recommend it!