Ladies' Home Journal

I was excited to see the latest issue of Ladies' Home Journal feature this story in their March issue.

The Choice: To Have Life-Changing Surgery, or Deliver My Baby

I had the privilege of meeting both Editorial Assistant Amelia Harnish and Health Director Julie Bain during a girlfriends trip to NY City this winter. Amelia gave my friends, Rebecca and Lesle, and I a tour of Ladies' Home Journal.

http://twitpic.com

David Molar and his wife Tammy did the photo shoot for the magazine. They are such a great couple with such amazing talent. If you ever have the chance to see David's work, check it out.

One of my favorite photo of the day was of our family.

It's ironic that the article came out the day I was being released from the hospital. This is the first time in a long time that I have felt very sick. I am still recovering from the RSV, pneumonia, and infection. It has been a harder road then I expected. I do feel so thankful for all of the prayers, letters, meals, gifts and well wishes from everyone to keep my spirits up. I am trying to reflect on present blessings and all of the amazing things God has done in my life, to bring me to where I am this day.

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.

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

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

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!

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.

Cystic Fibrosis and Death

Living with cystic fibrosis, I have always been keenly aware of my short existence on this earth. I don't know if others with chronic illness like cf have felt this same way, but it seems to be a matter of reality. This does not mean that I am not hopeful. I am a very hopeful person, who prays that my new pair of lungs lasts me a very long time.

The idea of death hit me at a very early age. My parents would be open and honest about all of us being mortal and coming to an end, not knowing when that time would be. Our family's belief in Jesus Christ and his salvation, gave me great hope at the young age of 6. I believed that if I did die, I would eternally be close to Jesus and His followers in heaven. I held onto his promise, that our faith in him would save us from our sin. Romans 10: ⁹ Because if you confess with your mouth “Jesus is Lord” and in your heart you have faith that God raised him from the dead, you will be saved.

The idea that my cystic fibrosis was life threatening did not penetrate my thoughts until I was older. When I began spending a lot of my time in the hospital. From 8 years of age until I had my transplant, I spent at least two weeks, usually one month each year in the hospital.

It was during these times, that I can remember hearing parents wail as they heard or watched their child die. I remember being in Children's Hospital of Philadelphia. If you walked the hallways, you could look down to the ER entrance. It was in those hallways, usually late at night, that I heard the wails of parents. Sometimes, I would hear them in my unit's hallway. They always gave me the goosebumps. I was often reminded during these stays that life is short.

As I became older and met others with chronic illness' like cystic fibrosis, sickle cell anemia or cancer. I thought to myself, there are a lot of hurting people in this world. The hospital can be a daunting place of reality. For me, it taught me empathy and sympathy for the sick and dying.

I made wonderful friendships during my hospital visits. I have many happy memories of spending time with my new friends, playing jokes on the nurses and doctors, eating non-hospital food late in the evening with the night shift crew, making special bonds with my new friends, and finally feeling the relief of the cf tune-up experience.

Making friends meant losing friends in the cf world. I lost my first friend as a teenager, shortly after she had a transplant. Her name was Gretchen. I will forever remember Gretchen. As I got older, and saw the horrible effects of the disease on my friends, it allowed me to value my life so much more. I never wanted to take my life, family, friends, or illness for granted. I wanted to live my life to the fullest. I wanted to have hopes and dreams that I could fulfill.

During these teenage years, my healthy friends would ask if I was going to die soon. Yes, teens are brutaly honest, and I was asked this quite often. But I was alright with this question and would typically respond with, "Yes, I could die young, but we really don't know how long we each have here on earth." There were some other tragic accidents during my teen years that reminded me of this. For instance, our close friends, the Lawlers, lost their beautiful daughter and three others in a car accident right before our family moved to the coast. This heavily impacted my life in so many ways and once again reminded me that our life if short and only God knows the number of days we have.

I'll stop here and continue on another post, about how my view of death has changed since my teens. Since these years, I have seen many more friends pass. I have come close to death myself, and my view has since changed and matured.

Living with a chronic disease can be a very scary experience. I am so thankful for my friends who have passed away and have encountered death that have taught me so much about life and living. How to live vibrantly, love unconditionally, while enjoying each moment you have. Now that I have had a transplant, it certainly has given me more time here with the ones I love, yet it doesn't exempt me from a short life. I am thankful for my faith in God and hope for the future. I do hope to use the time I have here on earth to live passionately with great purpose.

My friends, I hope that for everyone, whether you are as healthy as they come or taking your last breath!

Thankful

There are so many blessings in my life right now.

I randomly found this picture this week. It brings back memories from 3 years ago. It was taken on Valentines' week.

Looking back, I am so thankful:

*I can hold, touch, kiss and speak with my daughter as often as I please. During this week I was able to see Lovebug for the first time. But I was not able to touch her right away. This was very difficult for me. I could not speak to her since I was trached and using the portable ventilator for visits.

*I can eat! I love to eat now, and I partly blame it on the 6 months, I had nothing but enteral tube feedings. Every now and then I had a special treat of applesauce and thickened juice. Eating used to be a battle for my first 25 years of life, now I can't keep food away.

*I can speak & laugh. Like I mentioned before, with a tracheostomy/vent I was not able to speak for quite some time. I missed being able to talk and to just plain laugh out loud. When I did laugh, my machine would beep non-stop.

*I can move. I love being able to go places now. Perhaps, this is also because I was strapped to my bed 24/7 for 5 months. I try to get out of the house with Gwyneth and explore the world each and every day. I feel privileged to do so.

*I can smell. During this time I could not smell. This may have been a blessing, since the hospital environment, especially the ICU is not filled with the most pleasing aromas. Even though my sense of smell is not at its best. I love inhaling my favorite scents: baby bath time, springtime, and foods.

*I can snuggle with my husband every night by his side. When I was hospitalized as a CF patient, Nathan and I would snuggle next to each other at night in the very small single hospital bed. With a ventilator, this makes it impossible, the times he did snuggle, my vent would pop off, and I would stop breathing. This made for a traumatic experience. I am very thankful for each night we spend together snuggling.

*I have new lungs from a donor who made the unselfish decision to donate life. I was waiting and praying every day for the possible donor and his/her family during this time. I hoped every day for a second chance at life. I am so thankful for this person and their decision.

*I can hang out with those I love the most: my family and friends. At the hospital, I felt like I was surrounded by a lot of love. My nurses, doctors, physical, speech therapist ect. all became my new friends. But I missed my church family, close friends and family back home. February marked the sixth month of being away from home. As the saying goes, "there is no place like home."


It was through this experience that I have learned to appreciate and cherish the moments I have. Moments of living, breathing, smelling, tasting and touching that which I love. It is good to be reminded, through pictures like these of where I have been and where I am now. To never forget and always be grateful. For each and every day with the ones we love!

A picture of my tiny little ladybug, three years ago this week.

The Care Project: A Beacon of Hope

This weekend, we had the opportunity to attend a workshop with professionals and parents of children who are deaf and hard of hearing.

It was called The Care Project. Quoted from their website, what it is all about.

"Undeniably, life’s journey is full of challenges. Arriving with those hurdles are different emotions, dependent upon circumstances. An individual facing the challenge of hearing loss needs to be able to rely on a strong support system within the family and community. The CARE Project has a number of components designed to bring families and professionals together for sharing and processing emotions, with the ultimate goal being acceptance and advocating for the best life possible."

I really love this idea on so many levels.

I think having workshops for parents about grief and helping them accept and cope with hearing loss is wonderful. I believe Johnnie Sexton, the developer is really onto something. I wish every parent and professional could have a workshop like this geared for their child who is dealing with a disease or disability.

I find from living with cystic fibrosis and now being a parent of a child with some disabilities; support for understanding, accepting, and coping with daily difficulties is essential. Without it, life would be very challenging and depressing.

Parents want emotional support. Parents need emotional support. This is vital for the special needs community. If you have experienced any kind of disability or disease, you remember clearly when you heard the news for the first time. Your daughter has a genetic lung disease called cystic fibrosis. You have cancer. Your son is deaf. Your child has autism. Your husband is paralyzed.

Accepting this information comes with it, grief. This will come in all different forms, and it will come and go with everyone experiencing it. Grief leaves no one behind. How we deal with it, is up to us. We watched video of parents and children, speaking about how they have dealt with their hearing loss. What it means to them. How they have moved on and learned from it. We watched a video of a professional talk about the lesson she has learned in her lifetime. It was all so moving, very touching. It taught me so much about the hard of hearing and deaf community. It gave me an appreciation for those who have been where we have been. What lessons they have learned, and what they can teach us. This is what makes the world go round.

My husband and I were also able to meet a family within our community who have children who are also hard of hearing. This meant the world to me, to be able to connect with other families. I have a wonderful connection with so many people who are like me, with cystic fibrosis. These connections are very meaningful and full of blessing. But the hard of hearing world is new to us. Gwyneth was just diagnosed 1 year ago. Before this meeting, we hadn't met one other deaf or hard of hearing young family within our community. Now we have, and I feel excited to know we are not the only ones out there.

So, thank you to people like Johnnie who have a vision of how to help others and for starting such an innovative idea like The Care Project!

The Care Project

Growing Up with a Chronic Disease

Growing up with Cystic Fibrosis was a challenge but my parents and family helped me live a very happy and vibrant, young life.

At a very young age, my body was dependent on many medications to help me battle against the inward physical deterioration that was taking place in my lungs. I was also dependent on enzymes that I learned to swallow to help my body digest my food. But most of all, I was dependent on my parents and family who so awesomely took on this challenge and placed it in God’s hands. Each and every day they so creatively found ways to allow me to live my life as a normal little girl with such abnormal routines.

Now, as the parent of a child with special needs I am so grateful for all the sacrifices my parents made on my behalf. Having a child with a chronic disease; your constantly in thought of medications, equipment, learning new medical lingo, huge expenses, hospital stays, doctor visits, limitations, emotional needs, and what their future may hold. I am sure the list could go on.

I would love to hear a perspective from a child with a chronic disease or parent and how they can relate to these sacrifices. How they look upward, when your world comes crashing down on you. What creative methods you have used, that have helped your child. And what good have you seen from such a terrible fate?

As I look back on the many wonderful things that my Heavenly Father has done in my life and think of how He used my CF and certain life circumstances, I can only be amazed and thankful for how He has used these burdens and turned them into blessings, both for me and for those around me.

“For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” {Psalm 139:13, 14}

up and down

Life post transplant has its ups and downs. Having a cystic fibrosis (cf) gene free set of lungs to breathe with gives life an up feeling every day. Trading one set of problems, issues, & concerns for another can be a downer.

Then there is my special case: getting very sick, very quickly, being on a ventilator for 4 months, going through chemotherapy... all make the questions of why variable. I have had some memory problems since my 2008 transplant. They could be related to all of my special case scenarios or possibly the medications I am now on. I decided along with my doctor to switch my main immunosuppressant medication. I did so, in hopes my memory would improve. When I made this big move, the first couple of days I had my first sinus infection since last spring. It seemed a coincidence. Then my stomach was really, really bothering me. My doctor thought, not so much a coincidence. And so now, I refriend my old immunosuppressant medication and risk a bad memory. My phone is now my recorder of all things, and I am trying to adapt as best I can. The palm-pre for free was a great deal! My stomach is feeling much better. And as we all know the saying, "When Mama is not happy, nobody is happy." I can officially say, "I am feeling better and am happy again. Very Happy."

This week I am thankful for donors, thankful for cf free lungs, thankful for the medications that keep me alive. But most of all, I am thankful for a happy stomach. Smile.

A Little About Me: 65Roses4PattySue

My name is Patricia Suzanne. I once had a blog called, 65roses4pattysue.com. I go by the nickname, Patty Sue.

65Roses represents a story about cystic fibrosis. I was born with this genetic lung disease at six months of age. I still live with the disease except for one part of my body. My lungs.

My blog was an enjoyable outlet for me to show my family and friends photos and updates on my cystic fibrosis and life. It also was set up to inform those who knew me of a trust fund for my large medical expenses.

Factoid: Cystic Fibrosis is a "chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond." {CFF.ORG}

The predicted median age of survival for a person with CF is in the mid-30s. I am 28.

This life-shortening, genetic lung disease has been a challenge to live with but has also helped me in the development of who I am today. I believe that God created me with a perfect plan, and that nothing in my life has been accidental.

“For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.” {Jeremiah 29:11}