TRIKAFTA!!!

 

November 6th, 2019 I swallowed my first dose of Trikafta!!!!! I have felt every emotion, some I didn’t even know existed. We have waited almost 40 1/2 years for this moment! 

Heres to hoping for a prolonged future, the chance to take a deep breath with ease, and ditching this damn leash... a girl can dream and I am dreaming BIG!!! I have really high hopes for this drug. I am putting every single egg in the basket and really it’s because I don’t have any other choice. I think it’s ok to want big changes and to want them instantly. But in reality I think it will take time and my continued hard work and determination. Trikafta has a lifetime of disease and damage to work around and I just have to remind myself of that.

I can’t help but feel excited and nervous, I am hopeful, and I am beyond grateful for the opportunity to take this drug that I have been waiting my whole life for. It does come with a heavy heart knowing that I have friends who need it now and don’t have it yet, and that I have friends who don’t even have this as an option. I see you guys. I love you guys. I promise you right now that I will NEVER stop fighting until everyone has a chance at something like this! When I say ‘Until It’s Done’, know that I say it with all of you on my mind and in my heart.

Today as I swallow my first dose I will be focused on visualizing a positive outcome with minimal side effects. I want to be able to live fully each day and not just survive. Im envisioning stronger lungs and deeper breaths. 

I swallow this first dose for all who have gone before me, my special angels watching over me that I can’t help but feel had a hand in all of this. For my family and friends and everyone who has gotten me to where I am today. Thank you! This is for all of you! I have to quote my friend Gunnar “I am holding in my hands 30 years of cystic fibrosis research, millions in fundraising, hundreds of thousands of volunteer hours, and tens of billions of dollars of drug development funding. It’s surreal.” I am incredibly grateful! Breathe out Love! Xo❤️

30 years ago...

My first grade teacher always used the phrase “patience is a virtue” she repeatedly said this to the class as a whole and the individuals who needed a good reminder. Even tho I may have been too young to really grasp the concept it’s something that stuck with me throughout my life. ⁣

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30 years ago cystic fibrosis made headline news when the CF gene was identified by Dr. Lap-Chee Tsui. This was a HUGE discovery and a very pivotal moment in my life. This breakthrough changed genetic research and led to so many new medical advancements across the board. This was the first glimmer of hope for my family that came at a time when we needed it most. This new discovery solidified our fight and fueled our fire to keep moving forward in hopes that a cure would be right around the corner. ⁣

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Fast forward to today... we are still very hopeful, we are still fighting, and we are still moving forward. I often whisper to myself “patience is a virtue” Some days my patience is tested, its not easy being patient, especially when you see first hand what this disease is capable of. I can’t help but yearn for that day we make headline news again but this time the headlines read “CURE FOUND”. 

There are amazing things happening right now because of that breakthrough discovery 30 years ago. Today we are closer to a cure than we ever have been before, and for the first time in a long time I am filled with more hope than ever. That hope is the virtue that will continue to fuel my fight as we patiently wait for that sought after cure. 

Breathe out love! Xo❤️

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Cheers To 40 Years!!

This is 40! You guys WE did it!!! 

Cheers to 40 years!! 

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I celebrated my 40th birthday over a month ago and I think I’ll just keep celebrating all year long!! 40!! I can’t stop saying it!! I know that the odds haven't necessarily been in my favor and getting here hasn't been easy, but it has definitely been SO worth it!! I just keep saying it over and over again. I am 40!!! It’s hard to believe!! I know what a privilege it is... I’m beyond grateful! ⁣

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More than half the CF population is over 18 now which is so incredible. However, the reality is only 15% of the CF population is over the age of 40. This statistic hits a lil to close to home, it’s very sobering to me, and frankly it scares the crap out of me... 15% is NOT ok. A cure is so close, but we just aren't there yet! That is why raising awareness is so important to me. We can’t keep losing people to this disease. ⁣

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I am truly grateful for every single breath I breathe. Hitting these milestones is so special to me, I know growing older is a privilege denied by way too many. Each year it is an honor to turn another year older and in some way I hope that I am honoring ALL the friends I have lost to CF. It really does take a village to live this CF life and I couldn’t be more thankful for all of you! 

Thank you from the bottom of my heart. I am happily grateful for it ALL!! Cheers to 40 AMAZING years!! 🎉 Breathe out Love! Xo❤️⁣

Alex Award

I am truly honored to be the 2019 Alex Award recipient, to be honored and recognized for something that I feel like I was born to do is an indescribable feeling. I will remember this weekend for the rest of my life, it truly was so incredible and it meant so much to me! I cannot even begin to put into words or describe everything that I’m feeling. It’s been so overwhelming in the most beautiful, remarkable, inspirational way. Every second was jam packed with so much Love, Hope and inspiration it was so amazing and so powerful!

To have my family and friends once again by my side to experience all the energy that VLC stirs up was unbelievable. This award isn’t just for me, it’s for my amazing support system who continues to keep me going time and time again.

My support system plays such a huge part in my life, I know for a fact I would not be here today if it weren’t for the CF Foundation, my CF family, my angels, my amazing friends, my wonderful family, my babies, and all of you. I truly am so blessed and so very grateful.

Thank you from the bottom of my heart for this incredible honor! We really are stronger together and we will NOT stop until everyone  has a cure! Breathe out Love! Xo ❤️

Five Feet Apart

Just a reminder Five Feet Apart comes out this Friday, March 15!! Go see it!! 

There have been so many different discussions and opinions regarding this movie in the CF community. Whatever feelings you have towards this movie I hope you will at least see it, and when you do I hope it will help alleviate your fears and concerns and you will see how eye opening and well done it truly is. 

I have had the opportunity to see this movie twice now, once last month and again this week, both times the audiences were moved to laughter and tears. I thought FFA was incredibly done and very relatable! Last month I went with my parents and having them both tearing up next to me was an indescribable experience. I try to protect them from CF as much as I can but the truth is this is our reality. I don’t let too many people see the hard parts of CF, I guess my mindset is to always protect and be strong for everyone, I’m not too sure why I do this because it can be exhausting... I feel like it’s just the CF way, because I know I’m not the only one. There are some real, raw moments in this film and having my support system see it with me was a vulnerable feeling but at the same time it was liberating in a way to have them see the emotions I experience and all that takes place behind the scenes. 

As the cast was introduced to us and as they took on life with CF head on as so many of us with CF do I couldn’t help but feel Claire’s presence throughout the film. CF is different for everyone and although not everyone will relate to these stories that were portrayed so well I truly believe we will see a lil bit of ourselves within each character. Human connection is so important and when you live with a disease that prevents you from connecting with the very people that get what you’re going through having more people become aware and understand your world even if it’s just for two hours means more than you know. 

This film is bringing awareness to the forefront of a disease that so many people still don’t even know what it is, it’s going to be so eye opening for people. I truly believe it will help others have a greater understanding and new perspective not just of the CF community but the chronic illness community as a whole. There is so much more to CF than what you will see in this movie but this will get the conversations started and from there we can continue to educate and spread CF awareness. 

It’s pretty amazing to me that CF is changing before our very eyes with all these amazing modulators and the drugs that are in the pipeline. I believe CF as I know it and CF that is depicted in this film will soon be a distant memory and not the reality for the children that are diagnosed today, and that is worth celebrating! Breathe out Love! Xo❤️

Guest Post: Meet Jesse Da Costa

My name is Jesse Da Costa, and on this day two years ago I proposed to the love of my life my beautiful fiancé Ashley “Bea” Briggs. However, a few months after we got engaged I lost Bea due to complications from Cystic Fibrosis, she was only 29 years old. I honestly didn't know much about CF prior to her revealing to me that she had it.  After she told me I slowly started to learn all that I could about CF and how best I could support her. Unfortunately, I was only beginning to really understand the disease and trying to help her manage her health when she got really sick and ultimately passed away. 

It is my hope that by sharing my story that I can help others who are, or may be, in a similar situation. Being a Spouse to a individual with CF is not easy, CF is an isolating disease for all involved. There really is such a void when it comes to resources and support for spouses with CF. I hope as I share my story it will illustrate to others that you can take a tragedy and try to make something positive come out of it. 

The ensuing days and months after Ashley passed away were incredibly difficult and still are almost two years later, but I knew that I wanted to become active in the CF community and help in any way that I could. CF spouses are in a unique situation, and I think they can benefit from hearing about the experience of others like myself – it certainly would have been a great help to me if I had had it. Being as informed as possible about CF in general and being active in the management of your spouse’s health is incredibly important, something that I learned unfortunately a bit too late.

The one big regret that I have is that, while I was learning more about CF, I wish I had asked some of those important health questions sooner and pushed a little more. However, at the time I knew that Ashley knew more about CF than I did, and I always thought she’d be ok. I tried not to press her too much, perhaps I was also a bit afraid of knowing the answers to certain questions I had especially as I saw her begin to struggle a bit more. While it’s a regret I have, it’s also something I’ve learned to let go as unfortunately there is nothing I can do aside from sharing my experiences with others in hopes it can help someone else someday. I've fought hard to move forward with my life, as I know she'd want me to, and also knowing she'll be with me always, forever.

If you are reading this and are in a similar situation, I implore you to be persistent and ask those questions. Get involved. Ashley was forthcoming with me and had even agreed to allow me to come with her to future doctor’s appointments, but I think she had always felt like CF was her problem and wanted to deal with it herself, which meant refusing to let it govern her life or her relationships... that’s the type of remarkable person she was. As a partner of someone with CF, it’s incredibly important to be involved in the treatment process and to get informed as much as possible. And if you’re someone with CF, let your partner in and allow them to help. We want to support as much, and as best we can. Teamwork is vital to keeping everyone as healthy as possible. 

Staying involved in the Cystic Fibrosis community was also very important to me after Ashley’s passing, despite how difficult it was. I learned that people with CF have to deal with a lot of challenges on a daily basis. It was Ashley’s perseverance and zest for life that sparked something in me to help and do more. So together with Ashley’s family’s we started a non-profit organization called the Breathe for Bea Foundation.

                       
                                 

Our mission is to help make the lives of individuals and their families that are battling this life threatening disease more manageable by providing financial assistance and support, as well scholarships in her memory. We also provide hospital care packages to CF patients who have been admitted into the hospital for an extended stay and are hoping to also provide resources and tips based on our experiences. We hope that we can be a support to the CF population. 

Putting my time and energy into this Foundation really helped me through the grieving process. It allowed me to try and turn an event that was so incredibly heartbreaking, into something positive, by helping others with CF. Hearing from the people who we have helped thus far is incredibly rewarding, and I know Ashley would be so proud of what we are doing. It will never make up for her loss, but it’s fulfilling to know that we can help others who have also been affected by this terrible disease. 

CF MiniCon

I am really excited about the next #CFminicon on Aug 15th and I am so honored to be co chairing it with my friend Laima from LungStoryShort 

Getting a lung transplant can require a lot of preparation and planning. Whether you’re preparing, or have already had one, or just want to learn more about lung transplants this is the minicon for you.

For me living life in ‘limbo land’ and no longer being able to do the things I used to do has been quite an adjustment. As I adjust to my ‘new normals’ with my CF lungs I know a double lung transplant is in my future and I want to learn as much as I possibly can. Although transplant can be pretty daunting, I look forward to the day when my 'new normals' will be adding all the things back into my life that I miss with another pair of lungs that will be perfect for me when the time is right.

I love hearing stories of others and meeting people who are living life how it was intended to be lived with their new perfect lungs. Their stories give me hope and strength for when the time is right for me to embark on the transplant journey. Registration is live so go sign up now. 

https://cff.swoogo.com/minicontx

See you soon!! Breathe out Love! Xo❤️

Nobody Fights Alone

There are approximately 70,000 children and young adults like myself world wide that have CF. We fight day in and day out to stay as healthy as possible, our fight makes us strong!

“Maybe life isn't about avoiding the bruises. Maybe it's about collecting the scars to prove you showed up for it."

I believe life is what you make it. So make sure you keep showing up for it time and time again. Don’t give up, get back up and keep trying! Life can be frustrating whether you have CF or not, we all have struggles. So show up, collect your scars and continue to give hope to others. Show them that if you can do it so can they, you just never know who will be watching. We are all fighters in our own way. Some of us just have to fight a lil bit harder. One thing I know for certain is we are all in this fight together...Nobody fights alone! Keep fighting! Breathe out Love! Xo❤️

HUGE NEWS!! 47 and Counting!!

When I was diagnosed with CF at 11 months old my parents were told to take me home and love me because I probably wouldn't live to see my 10th birthday. Right then and there my parents chose to fight and fight like hell. When I was old enough I adopted my parents philosophy and I joined the fight. 

This past weekend at NACFC the median age of survival for CF was raised to 47. This is huge news!! I have seen some mixed reviews about this in the community. I have seen both positive and negative thoughts on this and a lot of misguided information. I think more information and data from the CFF would be welcomed by both sides. 

What does raising the median age of survival mean exactly.... well it doesn't mean we all automatically live to 47 and that's it. Yes I have seen this out there. 

I for one see it as a positive and amazing stride in getting us closer to a cure. Raising the median age of survival means to me that... 

1. My lil CF kiddos have a real opportunity to live longer lives!! 

2. Newly diagnosed children of today and the future are going to have even longer lives than us diagnosed in the 70s and 80s. 

3. These parents of newly diagnosed children are going to have such a better story to tell than my parents. Their experience will still be devastating to hear but not so negative and grim.  

4. This means that these drugs and medical advancements that we all work so hard for are working and it means there are options out there. When I was diagnosed there were no drugs available. We have come so far!!! 

5. It means all our hard work and time as an older generation of CF patients and loved ones spreading awareness, participating in drug trials, and fundraising is not being wasted. 

This huge news is more of a positive win for the younger generation and I for one am completely ok with that. It's why I do what I do! 

Some of my fears that I have with this huge news is... The CFF needs to stress it's the MEDIAN age of survival. I would hate for the increase in age to deter donations. We are still losing children and young adults to CF and the momentum of fundraising, research, and clinical trials CANNOT slow down! 

There will still be so many children and young adults that do not make it to 47 having a number like that can set up people's mind for failure and that scares me. 

My whole life or when I could truly grasp the fact about CF and what that meant I knew the median age of survival was 37. When I turned 37 a year and a half ago it was such a surreal feeling. I almost felt like a huge weight in some way was lifted off my shoulders. I remember thinking to myself ok. I did it!! 

I can't help but think now that I am in for another giant fight to get to 47.. I like to have goals and I like to surpass those goals but I also need to be realistic. Having unrealistic goals is stressful for anyone. Trust me I would love to live to 90 but again I don't want to set myself up for failure. Don't get me wrong I'm ready to fight and fight so hard. 

I have tried to never let statistics keep me from living my life or dreaming the impossible. I always say keep your hopes high and dreams BIG! Numbers or statistics should never define us, I feel we are constantly proving that ever day. All we truly know is that this very moment is all we have, and that's what we need to focus on! I know that nothing is worth more than this day, right here.... right now. Fighting CF takes a village, I couldn't be more grateful for my village that has helped me get to this very moment in life, and that is also worth celebrating in my book! Breathe out Love! Xo❤️

We Did it! Thank You!

Thank you so much!!!! We did it!!! 

Because ALL of you are so awesome, and amazing we surpassed my goal of $3838 at 11:30 pm on my birthday. We are now at $4,596 and counting. Woop woop #38Donate The money raised goes directly to the CF Foundation and 90 cents of EVERY dollar raised goes to funding research... which is so amazing and will get us that much closer to a cure. 

Thank you for ALL your love, your support and for just being right behind me every step of the way today and everyday!! My birthday link will be live until the end of May which is CF awareness month.  http://tribute.tributecff.org/somerlove38


Thank you so very much for all your continued support. I appreciate every single one of you, you truly keep me going. I am so very blessed to be a part of ALL of your lives! 
Breathe out Love! Xo❤️

38 Donate!

38 Donate!! May is Cystic Fibrosis Month and it just so happens to be my bday month.... I don't think this is a coincidence. 

It's an exciting time in the CF community more than half the CF population is over 18 now which is unbelievably amazing, but sadly only 15% of the CF population is over the age of 40. Turning 38 that statistic hits a lil to close to home and is very sobering to me, in fact this number is not ok. 

A cure is close, but we aren't there yet! Please join me as my theme for my bday this year is 38 Donate!! I have set up a special link to take donations that will go directly to the CF Foundation and help fund research to find that sought after cure. Because let's be honest that is the best birthday gift I could ever hope for. 

https://tribute.tributecff.org/somerlove38

As I celebrate my 38th birthday I know that the odds haven't necessarily been in my favor and getting here hasn't been easy, but it has definitely been worth it!! I am filled with more hope than ever, and truly believe with my whole heart that a cure is close. 

Thank you for making my bday so special by making a bday donation in my honor and helping all of us with CF keep celebrating these milestones. I dream of the day I can celebrate my 40th bday and I will have ALL of you to thank for that. 
Breathe out Love! Xo❤️

Love To Breathe Award 2017

I had the honor of presenting the Love To Breathe Award at the annual Adding Tomorrows meeting. The Love To Breathe Award was established in 2007 making this year the 10th anniversary which was pretty incredible. 

The award is given to:
•someone who is passionate about Cystic Fibrosis
•someone who is out in the community raising awareness and making a difference
•someone who is known in the CF community
•someone who has the ultimate goal to make CF stand for CURE FOUND

This years Love To Breathe Award recipient was Kathleen Richards!! She lives and breathes all these qualifications. To know her is to love her. I had the pleasure of presenting with her at NACFC this last November about mentoring, little did she know she's always been a mentor to me. 

I first met Kathleen when I was 12, she has put up with me for so many years not to mention my teenage years that alone deserves an award. She has taught me all my airway clearance techniques and was the reason I came up with my own technique which I call "Somer Genics" She loves mucus and to this day she still gets so excited when I call the mucus hotline. I'm so honored and lucky to have her as a friend. 

Kathleen thank you for all you did for me and for all you do for my lil CF kiddos. You have taught us all how to breathe deep, BLAST it out, and to always keep on going! Taking this pic with these cardboard heroes seemed fitting since you're a real life hero to so many!! This award was long overdue and so well deserved. Breathe out Love! Xo❤

Surviving Is My Reality

"And so she breathed through her life as if it were a battlefield and wished that one day she would actually live, and not just survive."


This quote is so fitting. CF is my battlefield I will tell you that surviving this battlefield is no easy feat! Today my CF apt was loooonnnggg and a lil bit draining to say the least. My mind is always on overload after appointments like today. I truly am in awe and so very grateful for this body of mine, it seriously amazes me everyday at how hard it works just to survive. 

My lungs are on a slow but steady decline. Seeing loss in lung function and facing the reality of what percentage of lung power I have left can be somewhat discouraging. However, I try not to focus on the numbers too much... it's easier said than done, but the mind can be a powerful healing tool. I have one month to turn these numbers around or I'll be joint bound. Until then I will continue to breathe through my battlefield and do everything in my power to survive because surviving is my reality and I have to be ok with that. 
Breathe out Love! Xo❤

CF Bacteria Is Stressful

https://cysticfibrosisnewstoday.com/2017/01/16/perception-of-first-respiratory-infection-with-pseudomonas-aeruginosa-by-cystic-fibrosis-patients-relatives-analyzed-in-online-survey/ 

Very interesting read from Cystic Fibrosis News Today...

I believe the more awareness and education on CF bacterias would be beneficial and help alleviate some of the stresses for parents or patients when they hear that pseudo or other bacterias are present. 

I think there is a lot of pressure on parents when they find out their child is growing out a bacteria. They usually blame themselves or immediately wonder what they could have done differently. The reality is that these bacterias are everywhere and there is steps you can do to help prevent being exposed but if our lungs want to grow out a bacteria they will find the power to do so. I'm pretty sure that even if we lived in a germ free bubble the bacteria would still somehow manage to get in at some point. 

Everyone I know in the CF community does the best that they can do. There's the extreme germ a phobe to the relaxed take life by the horns approach there is no right or wrong approach you just have to find what works best for you and your lifestyle. Hopefully with better understanding of these bacterias minds will be put to ease that even after all the work the patient or parent has done CF will still strike. So just keep doing your best, stay strong and positive and together we will fight when CF does strike. Breathe out Love! Xo❤

New Year... Keep Being You

I have spent the last couple of days reflecting on this last year.... Whether it was through laughter or tears I am so grateful to have had each and every moment that I did and so lucky to have spent them with some of the most fabulous people. There were some amazing moments in 2016 that took my breath away... in fact there are way too many to count or sum up in just nine photos. Each day is such a blessing, even the bad days can help you learn and grow. 

"If you're lucky enough to be different, never change."-Taylor Swift
Just Be You... Don't make goals to change yourself make goals to better yourself. You should never have to change who you are to fit in... be different! Be proud of who you are and own it. BE YOU! Happy 2017 everyone!! Thank you for your love and continued support. I hope this year brings you good health, happiness, lots of love and many moments that take your breath away. Keep being you. Breathe out Love! Xo❤️

One Year On Orkambi

I can't believe it's already been one year!! I was so nervous to start this drug, there were so many unknowns and so many questions. Although it may not be easy, there are times where you just have to be okay with not knowing what will happen next... 

Having the opportunity to take this drug that I had waited my whole life for was such a blessing. For the first time in a long time Orkambi gave me a glimpse of hope. Hope for a prolonged future, and hope that maybe I can live just a lil bit longer. I had so many questions when starting Orkambi and of course I couldn't help but have some high expectations. 

Will Orkambi be the right drug for me? Will it help me get off oxygen? Will it thin out my very thick mucus? Will I see my 40th birthday? Will I soon need a life saving double lung transplant? These were just some of the questions I had asked myself before starting Orkambi and actually I find myself still wondering these very same things. 

Unfortunately there is still so many unknowns and unanswered questions. I'm still not sure if Orkambi is the right drug for me. It still may take some time to see any type of results with it because of the stage of my disease. One thing I do know though is that this drug has done some amazing things for so many and that makes me very happy. 

On sept 30th the FDA will decide if this drug should be available to 6-11 year olds with CF.... I sure hope they approve it for them. This drug is doing wonders for those with healthy lungs. It could be life changing for these young kiddos, and nothing makes me more happy to envision my lil CF kiddos with grey hair and wrinkles. 

So today as I swallow my morning dose of Orkambi I will continue to focus on this drug working it's magic deep inside my lungs... so deep that we just aren't able to tell quite yet how it's helping me. I'm not giving up on Orkambi, I have so much hope for what's to come.... 

There are so many great drugs in the CF pipeline. I am hopeful that if Orkambi ends up not being the right drug for me there soon will be another drug that will help answer all my questions.... and maybe, just maybe meet my high expectations. 

Breathe out Love! Xo❤️

Cure Cystic Fibrosis

Sometimes we often hear "But you don't look sick"... If only people had X-ray vision.... 

What is CF?! Well, CF is a genetic disease that primarily affects the lungs and the digestive system. It causes our bodies to produce a thick sticky mucus. The mucus builds up in the lungs and can lead to life threatening lung infections. 

This is my actual lung X-ray, I call these my pearly whites. The white is irreversible scarring from the thick sticky mucus and the many lung infections I have had. Both the mucus and the lung infections have resulted in loss of lung function over time, my lung function currently hovers around 27-28%. I literally think about every breath I take. 

A CFers day consists of hours of breathing treatments, airway clearance, exercise, and handful of pills, and that is just the regular maintenance for when we are healthy. We work so hard day in and day out. 

CF is inconvenient, CF is exhausting, and CF will never be easy. However, I believe CF has made me stronger, it makes me fight harder, love more, and truly appreciate life one breath at a time... CF is a blessing in an ugly disguise, it's my reality and its made me who I am today, for that I am grateful. 

I will continue to fight and do my part until that one day CF stands for CURE FOUND!!  Breathe out love! Xo ❤

What An Honor

Thank you so much everyone for sharing this article, for all of your comments, messages, and your love and support. I think it's safe to say I am still in shock and still so blown away.

Never in a million years did I think I would be featured in Cosmopolitan and now ELLE too, let alone be on a list of this caliber... I am truly humbled. These 12 beautiful, courageous, strong, women are amazing and I am beyond honored to be on this list with them. 

I am so grateful to Cosmopolitan and ELLE for bringing awareness to Cystic Fibrosis and to all these other diseases as well. I hope that a cure is close for all of these battles and so many more. 

To the 12 amazing women I share this list with and all those that can relate to one of us... keep fighting, stay strong and continue to do amazing things. You are my heroes and you inspire me everyday. Together we will continue to fight and defy the odds! 

Breathe out Love! Xo❤️ 

http://www.cosmopolitan.com/health-fitness/g5902/inspiring-women-chronic-illnesses/?src=socialflowTW

Be Positive

"There are always flowers for those who want to see them."-Henri Matisse

Every experience we encounter is an experience we can grow and learn from. Its up to you to find the positive and the good from each experience. When we let go of the negative, positive things will start to happen... and I promise you, you will start to see flowers. 

Sometimes taking a step back, and looking at things differently can change your perspective. So when you start to see flowers make sure you take the time to stop and smell them too. Rejoice in the positive and appreciate the true value of every moment... Breathe out Love! Xo❤

Thank Heaven, I'm 37!!

"I wake up every day and think, I'm breathing! It's a good day."-Eve Ensler

I turned 37!!! A number I have waited my whole life to be, this year turning 37 has been so surreal for me, so many emotions surround this number. 

        

I am 37, ha ha, I have to keep saying it out loud, it's so hard to fathom. You're probably thinking what's the big deal about 37.... Well, from when I can remember, or from when I probably truly grasped the concept 37 was the average life expectancy for CF. So for most of my life I have basically had the number 37 dangling over my head. I'm so grateful for all the medical advancements, and amazing people like you that have recently helped increase this number to 41... I have tried to never let statistics keep me from living my life or dreaming the impossible. I always say keep your hopes high and dreams BIG! 

To actually be turning 37 is so surreal. It is such an accomplishment, and mind blowing at the same time, it comes with a lil bit of anxiety because I made it, now what? What's next? It also comes with a some survival guilt, I have had so many close friends not even make it to 30. I am so very grateful and blessed to be here another year. I really love getting older, it's a privilege denied by way too many. Aging is a gift that I am so very proud of! 

We don't know the whys, we don't the what ifs, all we know is that this very moment is all we have, and that's what we need to celebrate! I know that nothing is worth more than this day, right here.... right now. So for now I celebrate ALL the love and ALL the people that have gotten me this far. They weren't lying when they said it takes a village, and I couldn't be more grateful for everyone that has helped me make it here!! We did it!! 

With ALL my amazing angels watching over me every day I couldn't think of a better theme for this year.... Thank Heaven I'm 37!!! I'm old and I absolutely LOVE it!!

Breathe out Love!! Xo❤