Q & A: Christy Hamilton

Before my speech at Duke's CF Education Day this past weekend, I asked some of of my facebook friends who I know have a huge impact on the CF community about their advise, their influences, and their families. I really appreciate for those who responded to my questions. I was able to use question number three as a part of my speech.

Thanks again to all of my friends who participated. I am going to try and include these questions and answers over the next several days.

{The Questions}

1. How did your parents positively influence your life and living with CF? How did they negatively influence your life?
2. What unique memories do you have of your parents and how they took care of you living with CF?
3. What did your family or friends do to help you through your most difficult times with CF?
4. Did your family ever stop you from participating in anything because of your CF? In what ways did they push you to do things to help you?
5. What are the three best pieces of advise you would give to a parent of a child with CF?

{Christy Hamilton}

My friend Christy Hamilton lives in Charlotte, NC and was one of Duke's first lung transplant patients I ever met personally who had a profound impact on me and does to this day. Here is what she had to say.

1. How did your parents positively influence your life and living with CF? How did they negatively influence your life as a CF’er?

My parents were such amazing caregivers. They both poured everything into my CF care, never complained about anything regarding my treatments, 3 hour trips to see the CF pediatrician, or taking extra precautions in keeping me well. They never let me even think that my CF might be a burden on them. Negatively speaking, I think that both my parents and my doctor sheltered me regarding possible complications I might face in the future. I wish they had been a little more open with me and prepared me for the eventuality that I would get sicker and may even have to have a transplant one day. I feel like sugar coated everything, and I think that might be one reason I didn't take the best care of myself when I was in college.

2. What unique memories do you have of your parents and how they took care of you living with CF?

I have several unique memories. The most vivid memory is the stories that my mom would tell me during chest pt. They were about a girl named Annie, and over the years, Annie had many adventures. I couldn't wait to have chest pt time, so I could hear another Annie story. I have often encouraged my mom to write children's books about Annie. Another memory is the 3 hour trips we would take to see my CF doctor every 3 months. The entire family would go.. my mom, my dad, my sister, and me. The CF clinic was located in the mountains where "The Waltons" from the tv series supposedly lived, so on that trip, we would get Waltons' stories, and my sister and I would always get to pick out the restaurant we wanted to eat at. I think making it a family thing kept my sister from being left out, and it also made CF visits a special family time.

3. What did your family or friends do to help you through your most difficult times with CF?

As a child, I was never sick and never in the hospital. It wasn't until I was 23 that I was first hospitalized with a lung infection. My family has been there every step of the way with every hospitalization though. Someone has always been with me, and when I needed a double lung transplant, I had 41 friends and family members who stepped up to be tested, since it was determined that I would need a living-lobar transplant. My mom and my uncle were matches, and they each gave me a lobe of their lung. Later on, I needed a kidney transplant, and my mom also donated her kidney to me. No one has ever made me feel guilty for being sick or needing organs. :)

4. Did your family ever stop you from participating in anything because of your CF? In what ways did they push you to do things to help you?

No, my family never stopped me from participating in anything. I was a very active child. I played soccer, did gymnastics, was a baton twirler, a cheerleader, and even an aerobics instructor in high school. I know that all of these things helped to keep me healthy longer. When it was time to go to college, my parents encouraged me to go where I wanted, and never held me back. They pushed me to get out and find my dreams.

5. What are the three best pieces of advise you would give to a parent of a child with CF?

1. Never let your child think their CF is a burden on you. It's ok to cry with them, but don't cry over them... do that in private. Never let them think they are burdening you with their treatments, appointments, hospital stays, etc. If you are having problems with your boss because of missed days or any other problem that is the result of your child's illness, never let your child hear those conversations. Keep those private. 2. Don't shelter your child! If your child wants to play baseball, let them, or any other sport or activity for that matter. If they want to go away to camp, let them go. They need that autonomy. They need to fit in! That is so important for a child who is living with a chronic illness. Let them have the autonomy of taking over their care for a night if they want to go to a slumber party. Even if they do miss one treatment, it won't be the end of the world, and it might just give them the little bit of freedom they need every once in awhile. 3. If your child asks about the progression of CF, tell them! Of course you will also want to tell them about all of the new treatments being found and the research that continues to be done, but don't keep things from them regarding the eventuality of CF. I think being truthful with your child is the very best thing you can do for them.

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.

Earrings for Reese

Please visit this site to learn more about this beautiful little girl name Reese and her journey.

Reese and her family are such an inspiration to me. A group of my friends and I created homemade jewelry tonight to sell on her behalf to help with the extraordinary medical expenses they are facing.

Please take time to read about sweet Reese and her family.

And consider buying some of my handmade jewelry to go towards a great cause.

Thanks!

This first earring pair is made with purple, silver, and white jewels. I included two purple shells and a "believe" and "wish" jewel. Since I am hoping, praying, believing and wishing the best for Reese. Perhaps, this could be for someone who is also going through a hard time who you believe in.

This second nautical pair is made with brown and blue hues and includes fish and lifeboat jewels. I really like this pair and hope it can go to someone who loves the beach as much as I do.


The earrings are being sold for $10.00 each plus shipping. The first person to respond to this post with their email information can receive their chosen pair for $10.00 plus shipping. I plan to make more in the future.

MnM's: Monday Night Mamas

Lastly, here are some of the ladies I created the jewelry with tonight. They are some of my favorite friends who I meet with once a week. We call ourselves, the Monday Night Mamas.

Friends (Part 2)

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . a n d . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

A Tale of Two Friends (Part 1)

Good Reads ::::Easter

Easter:::::

History Channel's 3 minute historical take on Easter. I love the last sentence of this video and relating it to my faith.

The Cross: "Jesus' words from the Cross, when understood more deeply, will endear Him more to our hearts." -U.G.

Easter Activities & Crafts to do with the whole family.

Celebrations of Easter in Guatemala.

Forever Reign

We live and die. Christ died and lived! -John R. W. Stott

“I am the resurrection and the life, saith the Lord. He that believeth in me, though he were dead, yet shall he live. And whosoever liveth and believeth in me shall never die.” -John 11:25,26

the mud room: obx pottery with charm

THE MUD ROOM

A good friend of mine, Whitney Hines is a girl with many talents. I love her artistic ability and handmade pottery created in the woods of Kitty Hawk, NC. I would love to share some of her creations. If you're a local, please visit her sites and she has a great mother's day gift package.

the mud room: You can also find :the mud room: on facebook.

Our family at Whitney's pottery workshop. I was able to bring home some of my new favorite items as shown above. Lovely nautical magnets, sweet floral mini vases for embellishing your fridge, and a beautiful textured candle holder. I was in pottery heaven!

Diana

Many people have reached out to me to spread word about Diana.

Diana is a lovely young seven year old who has CF and who needs a family.

She currently is living in an orphanage where her care is very different then it would be if she was with a family who loved and cared for all her needs.

To meet Diana, visit here.

Click here for a blog site advocating for Diana, with a goal to find her a permanent family before her 8th birthday on April 24th.

"A father of the fatherless, and a defender of the widows, is God in his holy habitation. God sets the lonely in families." Psalms 68:5-6

Soul Surfer

Movie Review: Soul Surfer

Tonight I went out with a bunch of my girlfriends to see Soul Surfer. It is a movie about the true life story of Bethany Hamilton who lost her arm in a shark attack. It was an overall great movie. It was very touching, inspiring, powerful and a very family friendly movie. I especially loved the beautiful scenes of Hawaii and watching Bethany's faith play out in the film. Her message about God doing good through bad circumstances really meant a lot to me and our family, personally. I hope everyone gets to witness this Soul Surfer.

Breathe

I remember the first time I saw this video the summer of 2006. This video about breathing really captured my heart. The idea of breathing is one that I think of often, living with a lung disease. I love the words Bell uses to describe our very spirit and life in each breath. Here it is. Please take a moment to watch this somewhere you can really focus on the video and its powerful message. It is a moving, touching to the core of my soul kind of message.





Now that you have viewed the video, take the time to absorb this message. My heart was really transformed by this teaching on "breath." I hope you have the time to re-read and soak up these words and their meaning in your life.

"And we should breathe from our stomach, not our chest. But when we’re distracted, when we’re stressed, when we’re moving too fast, we tend to breathe from our chest.

Are we standing on holy ground all the time?” Passing burning bushes on the left and the right, and because we’re moving too fast and we’re distracted, we miss them.

So Moses says to God, “What is your name?” And God responds, “Moses, you tell them the LORD sent you.

Now, this name, LORD, if you’re reading it in an English translation of the Bible, the name is spelled capital L, capital O, capital R, capital D. The name appears in the bible over 6,000 times. But it wasn’t originally written in the English language. It was written in the Hebrew language. And in Hebrew, the name is essentially four letters. We would say Y, H, V, H. But in Hebrew, the letters are pronounced “Yod, Hey, Vav, Hey.” Now, some pronounce the name “Yahweh” or “Yahveh,” although in many traditions the name isn’t even pronounced because it’s considered so sacred, so mysterious, so holy. In fact, the ancient rabbis believed that these letters were actually—they function kind of as vowels in the Hebrew language. They believed that they were essentially kind of breathing sounds, and that ultimately the name is simply unpronounceable because the letters together are essentially the sound of breathing. Yod. Hey. Vav. Hey. Is the name of God the sound of breathing?

"Now, the book of Genesis says that when God created the first person, God took this dust; this dirt from the ground, and God shaped it and formed it and then breathed into it, and it became a living being.There’s this paradox at the heart of what it means to be a human being. We’re fragile and vulnerable. We came from the dust. As it says in Ecclesiastes, all people come from the dust. As it’s written in the Psalms, all come from the dust and then die and return to the dust.

...written in the Psalms: “Each person’s life is but a breath, even those who seem secure.” If you’ve ever walked the halls of a hospital, if you’ve ever stood over a casket, if you’ve ever driven by a bad car accident, then you know exactly what I’m talking about. Life is fragile. And yet, at the same time, we’ve been breathed into by the Creator of the Universe. And this divine breath is in every single human being ever. Like it’s written in the Psalms, Psalm 8 says that has God has crowned us with glory and honor. Now, the glory and honor in this passage isn’t referring to God, it’s referring to the people God made. We’re these sacred, divine dirt clods, and yet we possess untold power and strength. Your life is but a breath, and yet you were made by the Creator of everything.

Now, for thousands of years, people have understood that this physical breath that we all possess is actually a picture of a deeper reality. In the bible, the word for breath is the same word as the word for Spirit. In the Hebrew language, it’s the word “ruah.” In the Greek language, it’s the word “pneuma.” One scripture says that when God takes away the ruah, the breath of all living creatures, then they die and return to the dust. But when God sends the ruah, the Spirit, they are created. Breath, spirit, same word. And the first Christians took hold of this idea; then they took it way farther. They actually believed that the Spirit of God resides or can literally dwell; live in a person. One scripture in Romans 8 says that if the pneuma, the Spirit of God who raised Jesus from the dead is living in you, then God will give you life. Another scripture says that what the Spirit of God does, living in you, is it sanctifies.

Now the word “sanctify,” it means “to purge,” or to “clean out.” What essentially it means it that when you let God in, when you breathe, what happens is you become aware of all the things you need to leave behind, everything you need to let go of. If you were totally honest right now about what’s going on inside of you, what would we find out? What would you say if you just kind of opened it up? What’s inside? What are you angry about? What are you concerned for? What are you anxious for? What’s bothering you? What’s filling up your headspace? What’s stressing you? I mean, if we were to be totally honest about what’s going on inside of you, is there anything you need right now to breathe out? Jesus said that what the Spirit of God does, is the Spirit guides us into Truth. Is there anything you need guidance in? I mean, maybe what we need is as close as breathing. Another scripture says that God gives the Spirit without limit. Is there anything right now you need to breathe in?

Jesus said it, God is Spirit. And you are a sacred creation of God. The Divine Breath is flowing through you, and it’s flowing through the person next to you, and it’s flowing through the person next to them. You are on holy ground. And there is a holiness to the people around us. And how to treat them. Jesus said that whatever you do for them, you’ve done for Him. God is there because God is here. A person doesn’t have to agree with this for it to already be true. God has already given us life, and the breath we just took, and the breath we took before that, and the breath we’re gonna take, and the breath after that.

When a baby is born, what’s the first thing it must do, or this baby isn’t going to make it? Does this baby have to take a breath, or say the name of God? And what’s the last thing you do and then you die? The last thing we do is we take our last breath, or is it that when we can no longer say the name of God, we die? I mean, is it possible that you could be having a meal with a good friend of yours who doesn’t believe in God? And you could be sitting across the table from your friend who is saying: “There is no God,” and what you would be hearing is “Yod, Hey, Vav, Hey.”

May you come to see that God is here right now with us all the time. May you come to see that the ground that you are standing on is holy. And as you slow down, may you become aware that it’s in Yod, Hey, Vav, Hey that we live, and we move, and we breathe." -Rob Bell

30 & 3 Reasons

"Created to be, the perfect one for me" is inscribed inside of both Mr. Lovebug and my wedding rings. He is indeed, the perfect creation and counterpart to who God made me to be and today he turned 30 years old.

Listed are 30 Reasons that I love my husband

1. He is extremely talented and gifted musician. The first time I met Mr. L 10 years ago, he was playing his guitar and singing in a little white chapel of a church. This is my very first memory of him.

2. He is passionate for bringing people to worship our God and Savior. In August of 2000, I laid eyes on a man who was passionate for worshiping and leading God's people into his presence. Today, I continue to witness his fervor and love for worship each and every week.

3. He loves the Lord. This is evident in all He does.

4. He is goofy. One of the first impressions I had in meeting Lovebug for the first time, is he loves to goof off. He has a great sense of humor.

5. He is humble. One of the greatest acts of love is giving yourself away. Lovebug has always served me as his wife and now his family and always puts our thoughts and desires first. He will always give full credit to God when it comes to his talents.

6. He is romantic. Candles and a homemade meal, personalized songs written just for me, flowers for each special occasions, picnics on the beach, a custom ring made for valentines' day, he is very good at being the king of romance.

7. He loves surprises. Lovebug surprised me on Christmas Day to tell me we were going to Hawaii for our honeymoon. He had another special surprise for Ladybug's birthday this year. I love how he is full of surprises.

8. He is very smart. I can always look to Mr. Lovebug to answer my philosophical, spiritual, and trivial questions.

9. He is a great writer. I love reading his outlook on life through his writings. I am hoping one day he will publish his thoughts and experiences.

10. He loves his church family very much.

11. He loves being Papa, His eyes light up when he talks about his ladybug.

12. He is a very patient man. He encourages me in this area of weakness in my own life.

13. He is the eldest born. I am the youngest. We are a match made in heaven.

14. He is OCD when it comes to germs. This is great trait to have for a husband when your immuno-suppressed and your daughter was born premature.

15. He loves to change things up frequently. You may have noticed this with his hair styles. If he ever loses his hair, he may start collecting man wigs.

16. He knows the Bible and its truths very well. I can always come to him with questions I have regarding theology or if I can't remember a particular person or story in the Bible.

17. He is real. He tells you like it is. This can get him in trouble sometimes, but I appreciate his authenticity and desire to uphold what he believes is right.

18. He is very discerning. He is very gifted in discerning others and situations.

19. He is super cute and cuddly. I love being wrapped up in his arms.

20. He is intense. There is just something intense about Mr. Lovebug's personality. I think it shows in his eyes. I love it.

21. He enjoys the outdoors. We both love to spend time outside with the family whether we are going for a stroll, taking a trip to the beach, or going to watch the sunset.

22. He is responsible. He is a very responsible and reliable individual.

23. He is a very joyful, upbeat person. He has a great outlook on life.

24. He is an incredible chef. He loves to cook and is great at throwing together recipes.

25. He is very artistic and is the craftier one of us both.

26. He has a servants heart. I can always count on my husband to help clean, do laundry, whatever I ask around the house. He was brought up well.

27. He puts his family first. Lovebug has many responsibilities with his job, ministry, as a photographer, ect., but I can always expect him to put his family first.

28. He makes Little ladybug & I laugh and smile like no one else.

29. He has a tender heart. My Lovebug may not admit he is tender. But deep down inside, he has got such a great tender, caring, and loving heart.

30. He is faithful. He has been with me by my side, through the thick and thin in life. I can always count on him to be the loving, selfless, caring man that he is.


_______________________________________________________________________

3 Reasons I love my 3 year old lungs

1. I have never had the opportunity to breath like a normal, healthy individual before my transplant. My lungs were constantly congested with mucous. I was always coughing. Breathing was a battle. Any form of physical exercise was a burden. With my new lungs, that all changed. I did not think this side of heaven, I'd ever experience that. It is an amazing feeling.

2. I have the opportunity to use my days to do what I love. I absolutely adore being a mother. I love caring for my family. I love hanging out with my friends. And I enjoy being connected to the medical community and encouraging others going through similar circumstances. I am so thankful for the gift of life.

3. My life is a reflection of God's mercy and grace. My life is full of miracles. The day before my call for new lungs, I experienced a collapsed lung already totally relying on a ventilator, my future was looking very dim. It was the very next day, my husband's birthday that I got the call for a second chance at life. I found out after my transplant, the chances of finding matching lungs for me were less than 1%.

My God is amazing and can do the extraordinary!

I want to remind others, if it wasn't for the decision to give the gift of life my donor made, I wouldn't be here today. I am so thankful for their life, their family, those who influenced them, and the decision they made to become an organ donor. I will forever be grateful to my donor and the beautiful lungs that has allowed me to live my sacred life.
Please consider giving the gift of life.

Psalm 39:5 NLT

⁵ You have made my life no longer than the width of my hand. My entire lifetime is just a moment to you; at best, each of us is but a breath.”

*breathe picture taken from, shiningsungardenworks.com

March of Dimes

Ladybug was born premature. She was born at 24 weeks. We support the March of Dimes organization for their premature birth campaign focusing on awareness and education.

Gwyneth has been one of the ambassador children in our county. We feel blessed to be apart of this campaign in which the money that is raised, "supports programs in your community that help moms have healthy, full-term pregnancies. And it funds research to find answers to the problems that threaten our babies." {March of Dimes}

Our local walk is in Manteo at the Roanoke Island Festival Park on May 7th beginning at 9a.m. It is a wonderful event and walk which helps us raise local support to this wonderful cause. If your a local, we'd love to see you there!

We believe in being an active part of our community, and to give back to the organizations which have affected our family directly. This is why we walk for the March of Dimes, the CF Foundation, and support other local events like the relay for life. I will have on my facebook, opportunities to help our family monetarily support these great causes.

I love this baby teaching us on how the March of Dimes is directly affecting babies and their research.

And it you can help by giving to Team Ladybug to help the research and work being done, please click here.

Thank you so much!!

Cartoon Characters

Little Ladybug has many favorites recently.

These are some of her favorite cartoon characters...



Before laying in bed she insists on placing these on her feet each night.

She snuggles with this dog

and one of her favorite bedtimes stories is called, Super Sweet Dreams!
it makes her heart feel super happy.




When she wakes up, she like to say, "hello" to Kai Lan before her mommy.
and these are just some of the few.

Deaf & Hard of Hearing Community

I have recently come across some great resources for parents of children who are deaf and hard of hearing. I continue to learn so much through other parents who are blogging about their experiences. We have also been learning a lot from Ladybug's educators. I will be excited to share her progress as she is absorbing and progressing so much during this new year.

Here are some of the resources:

*Deaf Village: A great place to access blogs of those in the deaf community.

*Hear the World: A wonderful teaching initiative about hearing loss sponsored by Phonak. Ladybug's hearing aid producers.

*Hands & Voices: Information and networking for those in the deaf/hard of hearing community.

*Raising Deaf Kids: A group at Children's Hospital Of Philadelphia started this network. I love the special needs section.

*The Care Project: Our family has already attended two workshops locally and we love this program! It touches on the emotions associated with hearing loss with the goal of acceptance and advocating on our children's behalf to give them the best life possible.

*Beginnings: A NC program to educate and support parents. This is the first group that contacted our family to educate us and has been a great resource.

*Sign Savvy: Video dictionary of ASL, one of my personal favorites.

*Signing Time: A Favorite DVD learning guide that our whole family loves.



"According to the American Academy of Pediatrics, hearing loss is the number one birth defect in the United States – nearly 33 babies are born every day with permanent hearing loss, 1 in 1,000 have a profound hearing loss and another 2 to 3 in 1,000 have partial hearing loss." {Hear the World}

Read about a common misconception regarding hearing aids. Hearing aids will fix the problem, children can hear normally when they wear them. Our daughter has sensorineural loss and this isn't always the case.

And look at why this famous musician of my era, Joey McIntyre from New Kids on the Block is advocating for the deaf and hard of hearing community.

Online Hearing Test.

For those of you, like me, who can hear all the many sounds God created. Be thankful. Don't take any of your senses for granted!

St. Patty's Day

It's a Party

These next two friends are sisters and the hostess of the party.

Friends...

We all left the party with some sort of Irish Tatoo.

What did we do after the party?

Had a nice visit to this heavenly place on earth.

Surfing and CF

I have lived on the Outer Banks of NC for about 10 years now. Our coastal culture is heavily influenced by the surfing community. I am not a surfer myself, but have many surfing friends. I enjoyed watching this video. Why? Because of my top favorite things in the world, here are four of them.

*Watching Surfers Surf

*Those living/affected by Cystic Fibrosis

*Hawaii {My two times there with Make-a-Wish & honeymoon}

*Seeing others give back to their community

Thanks to the Mauli Ola Foundation for making this possible!

Explaining Cystic Fibrosis

A friend of mine, told me she appreciated this explanation of Cystic Fibrosis. I think it's brilliant and a great explanation myself, and would like to share the cute British cartoon clip. The United Kingdom's version of the United States CF Foundation produced this. I just love Oli & Nush!

I heart Mondays

Monday mornings are filled with alone time with Mr. Lovebug and I. I adore Mondays. Today, we hung out at the coffee shop, caught up on life {it's been a busy week}, went home and ate lunch with Ladybug. And then took some pictures for the fun of it.

I heart Mondays!

PS I love you

I'd like to think this song was written for me...

Or perhaps it's a coincidence that I was named with the initials, PS

Lately, I have enjoyed listening to the Beatles when I first wake up for a fresh cup of coffee or if I am driving on the road taking my girls here and there.

Life and Love

Today I am thankful for the gift of life.

Three years ago, I didn't know if I would see past my 25th birthday.

I didn't know if I would live to see my newborn daughter grow up.

I was afraid, she would never know me.

I was wondering if I would ever get the call.

I remember vividly, holding onto the hope of life.

Praying each and every day for my donor and family.

Playing a lot of scrabble games in between.

Looking out the hospital window.

Praying, and hoping, and wishing...

When Mr. Lovebug, wrote this:

Today marks exactly two months since I last...

Slept in the same bed with you.

Rode in the same car with you.

Was your primary caregiver (in action).

Ate a real meal with you.

Tickled you.

Bought a McDonald's breakfast for you.

Was really alone with you.

Ate your homecookin'.

Got your meds ready for you.

Danced with you.

Really kissed you good.

I've spent more time with you in the past two months that in forever, and I wouldn't trade it for the world.

But still, I miss you like crazy.

Life: I never want to take it for granted. I am so grateful for my donor's gift of it.

Love: I want to lavish in it. I want to consistently remind myself of where we were, and where we are. I want celebrate it, everyday!

My Weakness

This is my weakness...

Every year around this time, when I go into the pharmacy to collect my monthly med supply, I see this. It brings pure delight and happiness to my soul.

Thank you Cadberry brothers! I'll always be grateful to you for this invention of confectionary goodness.

Can I get a witness?

Check these out

Great article on Foster Care: I couldn't say it better myself. Thanks Kristy for sharing your thoughts and family with other children.

Excited to read this news about Cystic Fibrosis in the NY Times: Thankful for friends and family who have contributed to CFF to make this possible! Here in our small town of approximately 6,000 we have raised over $100,000 for CF research. Making drugs like this come a reality.

Love these lunch and sandwich bags: We are all about ladybugs in our home and sheep (Shaun in particular) too. I love these creative, crafty homemade and adorable bags.

Ladybug and I recently discovered this show: during breathing treatment time. We are delayed in finding cute shows since we don't have cable here in Lovebug Land. We enjoy the catchy tunes and science tidbits. It is something our older foster child enjoys watching with her.

Shout Out: Happy birthday to my daddy! He is the most loving, caring, compassionate, giving dad I could have. I love him so much and appreciate all that he has taught me about life. Looking forward to celebrating with my parents tonight! Ok, that link isn't connected to my dad, but he does share the same name with the iconic rock producer.

Lastly, I'll leave you with this cute picture of our fat tabby cat named, Ralphie. For those who may be wondering, the mouse is not real.

Who Wears Glasses?

Ladybug a I love to read together.

She began wearing glasses at one and a half years of age. As soon as she began wearing them, I decided to look on amazon for good reads on the subject of glasses.

Recently, I came across this book at the school's book fair and bought it right away. It is all about glasses and is perfect for her age level. I love the illustrations and it is made for Pre-K to Kindergarten readers. It is a favorite of ours to read.

Who Wears Glasses?
By Ana Galan
Illustrated by Seb Burnett

diary of a beachgirl

We Came

We Saw

We Played

We Loved

We Left

The End.