Surfing and Cystic Fibrosis: The Mauli Ola Foundation

"The Mauli Ola Foundation exists to introduce surfing as a natural treatment to people with genetic disorders. Since 2007 we have concentrated on the amazing connection between Surfing and Cystic Fibrosis. We have taken nearly 400 CF Patients Surfing at over 40 MOF Surf Experience Days. In 2011 we look to expand our program to help patients affected with Cancer and Alpha 1 Antitypsin. We appreciate your interest and would love for you to join the Mauli Ola Foundation Ohana by becoming a member and help us with our mission to help people with genetic disorders through Surfing." -Mauli Ola Foundation Website

They are going to be near my hometown, and I hope to visit at least one site. They'll be at:

Wrightsville Beach, NC (Oceanic Street) on Sunday, August 28th 2011.

Then, Virginia Beach, VA (Camp Pendleton Beach) on Tuesday, August 30th 2011.

These two beach sessions are for allowing kids with CF to learn how to surf by the professionals.

Then, on Monday, August 29th 2011 they'll be visiting CF patients at UNC-Health Care! I am really excited about the expansion of their mission. As a young patient at CHOP during my cf tune-up days, it really lifted my spirit when someone most everyone knew, took time to visit children in the hospital. I know they are going to have a huge impact on so many children's lives.
To see if this group will be near your hometown, check out their site. Mauli Ola Foundation.

Mahalo.

So Long, Farewell

Tomorrow, we pack. Ladybug to the grandparents, Lightning bug (our foster daughter) to our friend's R and LC, Pugbug will be packing to visit Uncle Frank, and Lovebug and I will be packing for a few days visit to Duke University Medical B&B. I will hopefully have some stomach issues resolved with a gallbladder removal and two other procedures in my stomach. I am not looking forward to being away from my girls, sleeping in a single bed, and taking medications that make me sick to my stomach. But I am thankful for what this stay represents.


TWO YEARS and SEVEN MONTHS since my last overnight stay in a hospital!

Wow, over TWO years!

Let's just say, It has been over TWENTY YEARS since that last happened.

Ever since I was 8 years old, I have been a patient at Children's Hospital of Philadelphia and then at Duke for at least a 2 week stay each year. The hospital became my second home. But not any more. It is such a nice blessing, to enjoy and appreciate this moment of being free for so long and not needing medical treatment overnight in a hospital facility. It will be weird going back. I may not remember what to pack. I know for sure: a fan, my own toiletries, my computer, something to read, a blanket. But what else am I missing? Clothes, yes. Because I have always refused to wear the hospital gowns. Except when I was in the ICU setting. I need to partner up with someone, and come up with some tasteful gown-wear. Pictures, yes. So I can show all the awesome staff at Duke how far Gwyn has come from her 1 pound, 6 ounce preemie cute self.

Thank you all for your prayers for this surgery. Lovebug and I will now, live and love each other gallbladderless. Sounds so romantic. It's nice to share something medical in common. We can compare scars. Perhaps, I should mention to Ladybug's surgeon next month about our family's inheritance of gallbladder issues. Yes. Ladybug is scheduled to have ear tube surgery #2, and eye muscle surgery #3 on September 2nd. Please be in prayer for her also. We would all appreciate it. Our medical journey seems never ending.

The end.

7 Years of Happily Ever After

Cheers to seven years!

June 27, 2004 -- our day of holy matrimony.

June 27, 2011--we spent the day traveling in the car 8 hours to Duke and back. I am still madly in love with my husband of 7 years.

SIGN LANGUAGE CLASS

I am really excited about this class for adults being offered this summer in the Outer Banks. After doing some research and not finding any classes being offered for adults on sign language, I happened to meet Trish who has a background in ASL and teaching. I don't believe in coincidences. Ladybug knows some signs, but we are hoping to teach her more. She is working on using expressive language, but for now, total communication has been our preferred method.

Worshiping in the midst of pain

Lately, I have been thinking, pondering, and praying for those dealing with painful situations. I have especially been touched by my friends and loved ones dealing with cancer. Of all my life experiences, cancer was one that touched me and took a great hold of my life and spirit. It was my first real and painful battle of depression. It was very difficult for me to live a joyful, passionate, eager to see the next day kind of life. It was a very painful experience. In the midst of the pain, God used music to really speak to my soul. My husband is a worship leader and so the songs he would choose for our church to sing each week, really reached down to the core of me and break me. I have noticed, that some of the top songs and albums of this year's Christian song list, can touch those going through difficult times in so many ways. Their lyrics are very powerful and so are some of the stories behind these song artists.

Blessings by Laura Story: It talks about God's mercies in disguise. The music and lyrics are lovely.

"Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise"



I loved reading the stories behind the songs. Here is Laura's personal story about her husband and creating this song.



"What does it look like when I spend years praying for healing for my husband that never comes? I feel like we’ve gotten to a place of having to make a choice- are we going to judge God based on our circumstances that we don’t understand? Or are we going to chose to judge our circumstances based on what we hold to be true of God? I’m learning that every morning when I wake up, to choose to trust God. And that’s what “blessings” is about. It’s just considering… MAYBE THE BLESSING IS ACTUALLY FOUND IN THE ABSENCE OF THE THING THAT I’M PRAYING FOR."


I Lift My Hands by Chris Tomlin: Another powerful song about crying out to God who is our refuge and strength and who is faithful and full of grace. The pictures used in Tomlin's video for this song are touching. It shows a little boy being treated in the hospital. Wearing a mask, doing a breathing treatment and riding around on his hospital bike. I can really relate to this little guy. As a child, there is so much trust and hope in one's future. As an adult, I can relate to Tomlin's words of just pouring out our hearts to God and allowing Him to hear our cries for mercy. "Let Faith Arise"

Psalm 28:2 "Hear my cry for mercy as I call to you for help, as I lift up my hands toward your Most Holy Place. "

Cousins

Happy Birthday to Miss Sarah! Ladybug's cousin Sarah turned one this week. Sarah is a special niece, since I was able to be present last year for her birth. She is the only niece/nephew out of 11 that I was able to be present for almost her entire birth process. She was also named after me which makes her extra special. Plus, she is super cute!

Here is one of Ladybug's Aunties, Rachel and cousin number 12 due and arrived this week. Photo was taken by Terry Kyle Photography.

Ladybug with Cuzbug for the 1st time. He arrived May 22nd at 10:10 p.m. and he is beautiful!

Lastly, Auntie Sarah with Ladybug and cousin Evaine. Aunt Sarah lives in FL and came for the week to spend time with the family. Here she is with her two nieces who she loves very much.

Giddy Up

My good friend Rebecca, whose blog you can check out here asked me what I would like to do this year for my birthday, something that is adventurous. I mentioned horseback riding on the beach. I have lived on the beach now for about 10 years and have always dreamed of horseback riding on the beach but have never looked into it. This week, my dreams came true!


It was a wonderful experience. The 2 1/2 hour ride went through a wooded path right onto the beach. We experienced some rain during our ride, but it seem to make it complete. Once we got onto the beach we were able to run with the horses. My friend Rebecca fell off her horse while it was running, and thankfully was alright. The last part of our ride was amazing. It is an experience I will always remember. Thanks Equine Avdentures!


Update on Earrings and Reese:

Joy will receive the first pair of earrings, and Virginia the second. Thanks for these purchases and helping a little girl going through so much.

To see more earrings available for Reese. Please check out Rebecca's Blog to view the earrings.