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Where it All Began : Fresh Paint

Who would have thought the two simple words "breathe" and "bravely" would come to represent what they do today. On April 1st, 2014 I took a deep breathe and bravely shared my first blog post.

Looking back it is all a bit surreal, and I can still feel the knot in my stomach and the shakiness in my fingers as I hit the "publish" button for the first time. For 60 days straight I blogged about my life with CF. I was open, honest, and real about the beauty and difficult realities my life held - seen and unseen. It's a decision that would impact my life more than I could ever fathom. Thank you to everyone who has been with me every step of the way through this incredible journey and continues to love me for all that I am. Love to you all.

Take a look back at where it all began those three years ago. (Click on the heading)

Breathe Bravely : Fresh Paint

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Today's post was written by Ashley Ballou-Bonnema.
To learn more about Ashley & Breathe Bravely as a non-profit organization click on the active links!! 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real 65 : Project CF Spouse

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis. 
It is a place for all those impacted to share their stories. 

The impact of CF extends far beyond the individual whom is diagnosed with the disease. CF transforms not only a single person but an entire community of friends, family, loved-ones, and spouses. And with a complex disease that can be so incredibly isolating, it's more important than ever to connect and find support in each other. And that is just what Megan Barker is doing. It is with great excitement we share today's guest post written by a stunning example of what it means to love and live as the spouse of someone with CF. People like Megan are making our CF community stronger and more tenacious through a project she founded called "Project CF Spouse." It's a great honor to share her story:

"I think it was around the second or third admission my husband had after we started dating, that I realized that my friends didn’t quite grasp the realities of dating someone with CF.  Questions like “He’s in the hospital AGAIN?” were asked multiple times.  It was hard for me.  I didn’t want to burden him with my fears, as I knew he had his own with each admission and sickness.  I had made lots of friends in the CF Community, mostly parents to kiddos with CF, but not any other spouses.  I really wanted to find someone who I could vent my fears and frustrations to who understood them. 

After a search on the Internet one day, I came across a blog owned by a CF Wife!  I was elated!!  After messaging back and forth, Amanda and I became fast friends!  Shortly after connecting with her, I was given the names of another CF couple by a friend.  I reached out to Kayse and much like with Amanda, a friendship formed fast!!  That’s one thing that I have really seen with the CF community, we are very close!!

I began to connect with other wives and decided to make a group on Faceboook that could serve as a support group for all of us!  It was a great place to ask questions, vent frustrations or just have support from someone who understood.  The group grew and grew!!! It was great!  What started with about four ladies, had grown to over one hundred members!  Each of us were at different places with our journeys with CF and eventually emotions divided the group and it was dissolved. 

After being a part of that group, I saw how important it was to have others who related to the CF Spouse-world.  I spent a lot of time talking with others to see what the most important part of that original group had been and from there, began to lay the groundwork for what would become Project CF Spouse.  In late 2016, Project CF Spouse, a non-profit organization, was established. 

I wanted to be able to take the experiences gained from the amazing women I had met along my journey and grow that into an organization that was designed to provide education and resources, in addition to the support that was so valuable.  I knew that there were lots of new people starting their journeys with their CF spouse (thanks to invaluable research and medications) and I wanted us seasoned spouses to be beacons of hope for them! 

There is so much that I see this organization being able to do!  Our amazing Board has put together some great goals for us and I look forward to working to bring those to fruition as well as continuing to look for ways to use this organization to help anyone who needs it!"

 

"Project CF Spouse is a nonprofit dedicated to educating and supporting spouses of people with CF. The Impact Grant will be used to grow the 150-person group, which started on Facebook, into an organization that will provide educational resources and access to other spouses and people with CF." - Cystic Fibrosis Foundation from "Impact Grant Awardees" Please visit Project CF Spouse on Facebook for more information and to join. 

 

- About Today's Contributor - 

Megan Barker is the Founder of Project CF Spouse! Her husband, Ty, has CF and he is her hero! He was diagnosed when he was 11 after having lots of respiratory issues. He just turned 39!! They have twin little boys who keep them hopping! Megan is a respiratory therapist, which is very handy when you are married to someone with CF!

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real 65 : Voices of CF

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis. 
It is a place for all those impacted to share their stories. 

Coming from a multitude of diverse backgrounds, experiences, and dreams, the cystic fibrosis community is made up of some of the most determined and inspiring individuals. Each journey is as different and unique as they are incredible. Giving their own unique perspective and voice to CF, the CF community is filled with people giving voice to CF through personal blogs. Each blog a telling example of how this disease affects each of our lives so differently, while reminding each of us impacted that we are never alone. 

Want to see the diverse sides of CF and follow other inspirational and honest journeys? Here are six blogs we think you should follow of people living with CF.  Each blog a diverse and honest representation of strength, tenacity, and bravery.
 

Do you have a blog about CF or follow a great CF blog? Share it with us! We'd love to check it out!


Thank you for the great enthusiasm and response to sINgSPIRE! Did you check out the enrollment information? sINgSPIRE Program

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.