Thursday, July 31, 2008

Vacationing on the OBX

Thats right, I've been a little lax in posting on here because I don't have much internet access while on the island of Ocracoke with my family :).
We've been enjoying a 2 week vacation on the Outer Banks of North Carolina (OBX), in a house by the beach with the whole fam...cousins, aunts, uncles etc...Its awesome!

The beaches are warm, the water is clear and beautiful (and really warm), and the town is so small we get to ride bikes around to little shops. We play tons of games, make lots of food, go to the beach all day, I surf everyday, and we get to catch up after a year of not seeing each other.

Its amazing to be away from things, i've journaled a ton and read a ton- its been great to see the beauty of God's creation- this place is beautiful and quaint. I love it...Here are a few pics from our trip thus far, let you into life in the Haager family, Ocracoke Vacation :)

Wednesday, July 23, 2008

What a night...

So many stories to tell, and many pictures to post...
I will give the highlights right now, and post more in depth stories at a later time. Right now, I am still processing emotionally, mentally and spiritually all that happened that night. But basically, it was an incredible night...

-$380,000 was raised towards CF Research!
-We filled all 600 spots, and then some
-The surfing industry understands CF and wants to do MORE to help find a cure!
-My speech went SO well- God truly intervened, took away my nervousness and the words came out exactly as I had prayed. the Holy spirit was with me, and with the people in the room.
-It was a fun night :)
-I was blessed by ALL my friends there to support me and work hard behind the scenes to help this event go on...knowing they were there to support me, I was humbled.
-All surfing companies and media can't wait to be involved for years to come...until a cure is found.
-God is working, I have a feeling that much is in store for me as I keep being involved with this.
-I was sustained physically thorough a long night of pictures, talking with people, and God shone through me.
-I was able to connect with families and CF patients that night, how awesome!
-Oh...and someone donated a Laird Hamilton Paddle board, and lessons with him, to me :). I am stoked!!

More to are a few pics with my friends (aka the awesome volunteers). I'll download some more, these are all I have on my computer right now.
Thank you all for praying for me- it was an amazing night, no words can describe it...

Saturday, July 19, 2008

Pipeline to a Cure is HERE!!

Tonight is the big night for our CF Benefit, Pipeline to a Cure!
See this website for more info on what's happening...

I ask for your prayers:
-Pray for my speech and my words, I want to be totally myself and glorifying to God
-Pray for the people coming- surfing celebrities, families of CF kids, people who don't know anything about CF
-Pray for the people running this event, that things would go smoothly
-Pray that God's will would be done
-Pray the awareness for CF is spread, and that research money is raised...A cure could be around the corner :)

I'll post pics of tonight, when I get's gonna be FUN!

Friday, July 18, 2008

Win a Car for CF!!

That's right, tomorrow night at Pipeline to a Cure, we will be drawing names to win a 2008 Toyota Prius!

You DO NOT need to be present to win, and you can buy a ticket for the raffle online! Tickets are only $100 each, not too bad considering you could win a fully-loaded car (think of the gas mileage you will save :)...
Click here to enter into the drawing!!

I am humbled that someone would donate this to our cause...incredible! All the money from this raffle will go directly to CF Research. Pretty awesome :)

Excited and Nervous

It's finally here!! The big day!
Tomorrow evening is Pipeline to a Cure benefiting the Cystic Fibrosis Foundation. It's a gala dinner that ties both the surfing community and CF together to raise money for research (see the label "Pipeline to a Cure" for more posts about this...

So, I'm finally feeling ready for this! I will be the main speaker for the evening, I've been the 'face' for this event for the last year- and its really been picking up speed. I'm feeling excited and nervous, all at the same time...

Excited...because this event has been in the works for over a year- many people have worked hard to get this event off the ground, celebrities and major surfing stars are involved and giving up their time, and the night is just going to be a blast! I am excited to be with the people that are supporting CF, I feel so humbled that people are giving thousands of dollars to cure the diesase that I have. I am excited to get dressed up and enjoy a gala dinner with friends and family, and also I am excited to share my story and my heart- this is one of my biggest passions in life, I am STOKED that I get to do this!

Nervous...because I will be sharing my story and my life with over 600 people in the room. I have never spoken to this many people, and it's definitely a little intimidating when I think about it. I ask for your prayers for my nervousness tomorrow night. I ask for your prayers as I really just want to be me- I am praying God will be glorified through my words, my heart and my actions, and I ask for your prayers that things will go smoothly, my speech will be heard and understood well, and that my words will be clear when I talk.

It's going to be a great night- I can't wait to post pictures and tell all about it!!
Here's to research and a cure for CF...

Thursday, July 17, 2008

Please Pray tonight

It's been a long day, and my body seems to be reacting to that. I need some prayer for my lungs- they've been bleeding tonight and I'm coughing out lots of blood, called "Hemoptysis"

This is common with CF, it usually means I burst a blood vessel while coughing, or I've got an infection starting up in my lungs...Please pray for me tonight, its a little scary and my body needs some serious healing. I am praying its the first option and that the blood vessel will clot as it is supposed to...

Thanks, I am trusting God, that HE is in control.

Wednesday, July 16, 2008

OC Register Article

My last week's surf session with Mickey Munoz was printed in the OC Register :).
Check out this link!


Tuesday, July 15, 2008

What's life like, right now?

In an attempt to be real about life right now...I want to share some deeper thoughts of what life has been like for me in the last month. As i'm preparing to give a big speech on Saturday, at Pipeline to a Cure, getting ready for this has brought up a lot of emotion that I haven't really dealt with in a long time (if ever)...allow me to explain.

It's been a journey for me, as an adult with CF. I've had my difficult times in the hospital, been sick a lot, missed out on some 'normal' things that peers my age get to do, and feel like i'm constantly adjusting to a new state of normal...My body is always changing, and my body is so connected to me emotionally and mentally. One thing about how I deal with a life with CF, however, is that I don't choose very often to focus on the devastating parts of having Cystic Fibrosis...I believe that the hope I have is what has gotten me through those tough times- so honestly, I choose not to always think about death, life expectancy and whats ahead. Sometimes it's a matter of survival, to be honest.

In starting this blog, one of my goals was that I wanted to be real- no putting on a mask to hide what's going on, and this is one of those moments. Many people i've known with CF, haven't made it...and I honestly don't know what lies ahead for me, I don't always understand why this is happening. So talking about these things may be a little hard for me on Saturday, (thus, I welcome any prayers).

However, in working on my speech, i've had to really think about what I'd like to say and be honest about the realities of CF...and those realities are not pretty. Not to mention, this has been a very vulnerable ride as my life and story will be told among 600 strangers in the room, and has been on the news across California...So, I have been really learning to take it in and trust that God is really working and to be honest, as hard as it is to be vulnerable- there is a feeling of freedom, knowing that this is my life and I am not hiding.

With all that said, this process of preparing a speech and getting ready for a big event has definitely brought me to reality, and has forced me to look inside me and see how I am really doing. I am in a vulnerable place, yet I feel so free- knowing that I can be myself and share my story is a huge blessing in my life. I don't have all the answers, and though I struggle with the idea that I have to be perfect and know all the right things to say, I am learning to trust that God has it all under control anyway. I still don't always understand why I have CF, and I don't always live at peace and I'm not always happy. However, I am learning to rest in the trust of my God who loves me and cares for me, no matter what state I am in or how I am dealing with things...

Thanks for reading, I'm not even sure if this made any sense. Receive it as you will...I just wanted to share that little piece of 'life right now' :).

Monday, July 14, 2008

Being light=Being Real

I was challenged this weekend at church as the message was on the Sermon on the Mount, Matthew chapter 5...
The pastor talked about the "Beatitudes", and then moved on to verses 13-16:
"You are the salt of the earth. But if the salt loses its saltiness, how can it be made salty again? It is no longer good for anything except to be thrown out and trampled by men. You are the light of the world. A city on a hill cannot be hidden. Neiter do people ligt a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before men, that they may see your good deeds and praise your Fater in heaven"

What challenged me most, was that before Jesus calls people to be salt and light, he reminds people that they can be who they are "poor in spirit, mourning, meek, merciful..." (see Matthew 5:3-11 for reference). Basically, he calls people to be REAL and that is what He will use. The message this weekend that God really challenged me in, was that I don't have to be perfect to be in God's kingdom, I don't have to follow religious rules or act a certain way- God will use my imperfections, will use the characteristics He has given me and my "realness" with God will be salt and light to the world.

In my attempt to be real, I wanted to share what I was challenged by. If I want to be a light that is showing God, I need to be real and be myself....

"Real Orange", on KOCE tonight!

Tonight I am scheduled for an interview on KOCE (Cable PBS channel, look online to see which channel your city has- here in Diamond bar, its Channel 8)...
The show is called "Real Orange" and its all about things going on in the lives of Orange County. They are doing a segment of the show on Pipeline to a Cure, and the Cystic Fibrosis/Surfing connection...Myself, and Paul Motenko (part of the CF Foundation) will be intervied live on the show tonight.

I ask for your prayers- I am a little nervous as it will be live. Each interview i've done thus far i've been able to screw up because they edit things...however, this show will be on live. Pray my words are clear, that I am able to articulate and be myself with the interviewers and the camera, and pray also for my interactions with Paul and the tv station. My heart is that God will be seen through CF, and that Pipeline will be given the press needed. Keep praying for our event, it is coming up in only 6 days!

The show will air at 6:30pm tonight, will be re-played at 11pm tonight and 8am tomorrow morning...
Thank you so much for the prayers and support, I definitely appreciate them :)

Friday, July 11, 2008

My New Vest!

Today was an exciting day...I finally got approved by the insurance to get an upgrade on my Vest Machine!!
The Vest is a machine I use to shake up the mucus in my lungs- it is a high-powered machine that compresses the air so that it shakes and helps the mucus to dislodge from my lungs so that I can cough it out.

I've been using my very old model that weighs about 60 pounds so I can't really take it anywhere (not to mention its really awkward shape)....

Now I have my NEW one, which is about 1/2 the size, weighs about 15 pounds, is digitally programmed, and comes in its own little convenient carrying/rolling case :)....

So this may not seem like a big deal to you...but to me, its huge! It means I can be more portable, I can take it with me and make my life more mobile and free :). Praise the Lord for great people who helped make this happen and for somehow working the insurance so that they would approve my new device...

ABC7's Story for Pipeline to a Cure!

KABC did a story for us about CF and Pipeline to a Cure... It aired yesterday on the 4pm news here in LA!
Check out this link :)


Thursday, July 10, 2008

KOCE Airs tonight

My story, and my day of surfing with Mickey Munoz will be airing tonight on KOCE. It should be on at 6:30, and then replayed again at 11pm and 8am tomorrow morning :).

KOCE is channel 8 for me, but I know its different everywhere else. its basically the cable version of PBS, so check the KOCE Website for listings in your local so-cal area. I hope I can figure out how to post it up on my blog, but we'll see how that goes!

Hope the show tells my story well, and I pray that those who see it will be interested in supporting CF and interested in Pipeline to a Cure!

Wednesday, July 9, 2008

Interviews and Press...update

See the first post below to read the first one of this series.

Yesterday, we did lots of press and interviews for Pipeline to a Cure! Two tv stations were there- KOCE and KABC, and also a reporter from the OC Register (newspaper). On top of that, I got to surf with Mickey Munoz and Jericho Poppler ...two of the most famous and legendary surfers in the history of surfing!! They are both incredible, lots of fun, and I felt like i gained a TON of surfing wisdom from them :)...Not to mention, they wanted to talk about my life with CF and they are 100% involved in helping out the Cystic Fibrosis Foundation!

All in all, it went well. As of now, I know that ABC and KOCE will air the pieces today or tomorrow, i'll hopefully post it on here when I get the chance...and the OC register should print an article by the end of the week. I'll keep the blog updated :).
Thank you all for praying, this has been a BIG change in my life- i'm vulnerable, and open about my life to people and all along praying God will be seen...

Tuesday, July 8, 2008

Interviews and Press today

Today is a big day for Pipeline to a Cure!

I will be surfing again with Mickey Munoz, surfing legend, and then we will be interviewed by a few TV stations. I ask you all for your prayers- that God would speak through me, and that His power and work in my life would be given the I ask for prayers for my responses, and also my nerves- that I would be calm and ready to answer whatever is asked.

I was encouraged by this verse, this morning:
Psalm 115:1
"Not to us, O Lord, not to us but to your name be the glory; because of your love and faithfulness"

Thanks for praying for me today.

Monday, July 7, 2008

Happy 4th of July...a few days late

I didn't have internet access while away, but I had a lovely weekend at the beach in Ventura! My small group and I spent the weekend at a beach house, it was beautiful!
I enjoyed sleeping in a ton, watching some movies and the best part was that the house we stayed at was RIGHT on the beach...a beautiful view, and fresh beach air coming in the window :). Awesome fireworks on the beach and some great conversations and food throughout the was SO nice to be away and enjoy the holiday!

Happy 4th of July to everyone, hope you had a great weekend....I'd love to hear if you did anything fun :)

Tuesday, July 1, 2008

Bye Bye, Bubbles..

Yes, today is a moment in history. Bubbles (my car, seen in the photo below) is no longer in my possession. I sold him today to someone that I hope will take good care of him. He was a good car, reliable and SO many memories, laughter, my first surf trips and fun times were had in that car... I'll be looking for a newer car in the next few weeks, so onward with the surf trips and more memories!

Here's a little salute to my Honda Accord, Bubbles...see ya later!

Ps. A special shout-out to Kimi who gladly gave the name "Bubbles" to my champagne colored car on that late, crazy-rainy night back at Biola :)