Filtering by Tag: relationships

sINgSPIRE : A Meeting to Remember

Session II of sINgSPIRE is underway with fresh new students and several continuing on from the first session! It's an incredible group of participants and we are so excited to see the amazing progress as students take part in their weekly lessons with their assigned sINgSPIRE instructor. 
 

Zoom, Zoom.

All lessons a part of sINgSPIRE thus far have been done via a platform we use called, "Zoom." It is a video-call service that allows us to see and hear each other with minimal delay and good sound quality. This platform allows sINgSPIRE's participants with CF to take part in the program from all over the United States as our instructors are based out of Sioux Falls, SD. This platform also allows participants with CF to remain in their comfortable environment and do lessons from the comfort of their own home. What has been most amazing are the meaningful relationships between the students and their instructors that so easily have formed through a computer screen while actively taking part in learning the art of singing. 

The Meaningful Meeting

Because our sINgSPIRE students are from all over the country, that makes it difficult for the student and instructor ever to meet face-to-face in the same location. But, this past weekend, our sINgSPIRE instructor, Maren, was traveling for a wedding to the location of one of her current sINgSPIRE students. And a pretty cool thing happened - they got to meet face-to-face and sing together in the same location. I am positive it is a day they both will remember always. 

What we get to share by being a part of sINgSPIRE is pretty amazing and we feel pretty lucky to share this life-changing experience with our participants. We are certain sINgSPIRE's impact will have lasting effects on everyone who is connected to it: student, instructor, supporter, you.  

Don't forget, if you or your child is interested in being a part of sINgSPIRE please sign up via our sINgSPIRE enrollment page. 

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.

Breathe Bravely Backyard Bash

It happens once a year. After a morning of walking to support the Cystic Fibrosis Foundation and their tireless endeavor to finding life-extending therapies and cure for those living with CF, our backyard is transformed into a gathering place for a night of celebrating Breathe Bravely. A night celebrating each of you that has helped give life and breath to this organization and made it sing.

This night was something truly special. The energy in the backyard was contagious to anyone who walked through its gates. It was an atmosphere that enveloped you in pure happiness: live music from beneath the pergola, awesome pizza, amazing friends, and a simple cause that was alive in every person present. From beneath the giant tent and backyard you could hear laughter from all the kids, the crash of giant Jenga blocks, and an abundance of joy. Most of all, there was an unmistakeable hum of excited conversation - dialogue that buzzed around the incredible milestones achieved by Breathe Bravely this past year. 

BRAVE BUNDLES:
In the last year, Breathe Bravely has sent out 20 Brave Bundles to individuals across the United States in need of an extra boost of bravery and support during a difficult time. Find out more about our Brave Bundles and send us a message with the name of someone you know that might be in need of a Bundle: Brave Bundles.

IMPACT:
This year, Breathe Bravely was awarded an incredible opportunity. Our organization was the recipient of the Cystic Fibrosis Foundation Impact Grant - a grant allowing Breathe Bravely to see its dreams of sINgSPIRE take shape and come to life.

sINgSPIRE:
In February of 2017, Breathe Bravely's sINgSPIRE program was underway. The first 5 students had a successful and meaningful 10 weeks with their assigned sINgSPIRE voice instructor - together combatting cystic fibrosis through the art of singing. This week, 5 new sINgSPIRE students will be assigned to one of our brilliant sINgSPIRE instructors and the next session will be underway! We are off to an amazing start with this Breathe Bravely original program and it couldn't have been possible without you and your fervent support! Learn more about our program and submit an application today.

GIVING VOICE
Over the last year, Breathe Bravely has had the amazing opportunity to use its voice - creating meaningful dialogue and building a community among those impacted by cystic fibrosis. Most importantly, we have continued to simply find and share the beauty that lives within every breath we each are given. 

None of this would have been possible or continue to be possible without each of you, your unwavering support, and belief in our mission. Thank you for being right next to us every breath of the way. It's amazing what can happen in a year, and we are just getting started. 

If you'd like to learn more about Breathe Bravely, donate to our mission, or send us a message please explore our website!

 

 - THANK YOU - 

A huge thank you to Jordan & Stacey at Big Top Tent Rentals for their heartfelt generosity. Thank you for taking such good care of us, keeping us cool, and helping us transform our backyard into some place truly unforgettable for the Breathe Bravely Backyard Bash.

As always, the music made the evening and it couldn't have been more meaningful. Thank you to dear friends of mine and advocates of Breathe Bravely, Martha & Mr. Stai. What you both shared that evening was absolutely priceless and so meaningful. Thank you!

One of my favorite elements of the evening, of course, was the food. Not only was the food delicious and so fun to partake in, but the people who made it are what made it so special. The wood-fired pizza and the genuine kindness shown by Kyle & Nicky at Skipping Stone Mobile Wood Fired Pizza is something that helped make the celebration so memorable. 

Speaking of food, we cannot forget what has become the signature dessert of our event: the Red Velvet Cake made by Darla. Not only is it delicious but it's made with the most genuine of love, making it all the more unforgettable.

Most of all, however, thank you to everyone who came out and celebrated with Breathe Bravely and to each of you whom so passionately support us. We are so very grateful for each of you and your generosity. I hope this year's Breathe Bravely Backyard Bash was a fun and special night for each of you! Here's to an incredible year ahead.

 

Truly grateful,

Ashley

 

 

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 : Dreaming Pink and Blue

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

At the root of every life are dreams unique to the person who holds them. Much of our lives may follow a similar path but the details that compose them are what make the journey truly unique to its dreamer. But sometimes those dreams are littered with obstacles beyond our control. It's a true privilege to share Trini's story with you today. Most of all, however, it's a privilege to share her dreams with you and how she has not allowed her a life, which could possibly be seen by others as one filled with undeniable obstacles - one being cystic fibrosis. 

"I feel like every decision I have made in my life has prepared me for my diagnosis of Cystic Fibrosis. Obviously I didn’t know that I had this disease for the first 29 years of my life, but I feel like I was prompted to make the decisions that I have to keep myself healthy.

At a young age I was introduced to the world of sickness, but it wasn’t me that was sick. My older sister had “asthma” and was in and out of the hospital with breathing problems. She was on multiple medications and she also was on breathing treatments. I was familiar with the hospital, breathing treatments and antibiotics. When she was 29 years old she was diagnosed with Cystic Fibrosis.

I was a really lucky kid and I hardly got sick. When I was 13 I started getting sinus infections frequently and ended up getting sinus surgery due to the buildup of mucus in my sinus cavities. When I was 14 I had my right fallopian tube removed due to a paratubal cyst; who knows if that was related to my unknown cystic fibrosis. I started swim team in 8th grade and continued to swim all through high school, as I look back now this was the best exercise I could have been doing for my lungs and my sinuses. I was diagnosed at the age of 16 with “exercise induced asthma” because I was constantly coughing up junk during swim practice and swim meets. In my early 20’s I don’t remember getting sick very often except for my struggle with fertility. I had labs drawn, a Hysterosalpingogram (HSG), went on fertility medications, had a second tubal surgery, and finally went to a fertility clinic to start the In-vitro fertilization (IVF) process.

I have always wanted to be a mother, it has been my goal in life, and I have dreamed about having a big family. I was very lucky and got pregnant on my first IVF cycle, with twins nonetheless. My husband and I were so excited. When I started to relax about my pregnancy I started to have complications. I started contracting at 19 weeks, then we lost our little Corbin at 24 weeks. We were devastated. We continued to have complications with bleeding, and more contracting and then at my 29 week appointment our living son's heart rate had dropped way below normal. I was checked in to the hospital and then ended up delivering our son 12 weeks early with an emergency cesarean section. 2 years later we tried getting pregnant again through IVF and got pregnant but miscarried 8 weeks later. After this miscarriage I didn’t want to try to get pregnant again  without getting everything checked out. We found a great high risk pregnancy center and went in for genetic counseling. My older sister had just been diagnosed with Cystic Fibrosis 2 years before and they decided to screen me for the same genetic markers that she had. August 19th 2015 I was diagnosed with Cystic Fibrosis. I would say that starting from the years we were  trying to conceive until this diagnosis were some of the most emotional years of my life. With fertility treatments, miscarriages, burying a child, doctors appointments and then being diagnosed with Cystic Fibrosis; it has surely been an emotional rollercoaster.

Last summer we were approached by my beautiful sister in law, she offered to get implanted and carry our child. I didn’t want to give up on my body and we decided we would implant one embryo in my sister in law and one in me. We are both 26 weeks pregnant and are so excited to complete this journey. I am working closely with my OB, high risk doctors, and my CF team to make sure that the baby and I stay healthy and complete the pregnancy with a healthy baby. Now, my pregnancy hasn’t been the easiest; I bled through the first 18 weeks, started contracting at 20 weeks, and I am on multiple medications. The important thing to remember is that you can’t change what you're given in life but you can control how you look at the challenges you are given. Don’t give up. If there is something in your life that you want, there is a way to get it, or accomplish it. Just because you have Cystic Fibrosis that doesn’t mean anything. Focus on what you can change and what you can do to make life easier, keep yourself healthy and get what you want!

Keep Dreaming! "
 

 - About Today's Contributor - 

Trini is a passionate mom, nurse, writer, and relentless dreamer. To follow her journey of dreaming and becoming a mom go to her blog, Dreaming Pink and Blue.

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 : Open Doors

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 greatest of adventures lead you right to where your heart is happiest. A quick spontaneous trip lead to waking up to my favorite people this past weekend. That means some extra med time support - good thing I packed extra new tubing so everyone could get in on neb time. 

Thanks to Kendra for snapping this priceless photo!

Thanks to Kendra for snapping this priceless photo!

I always wonder what their little eyes see and minds think when they see me this way. My first instinct has always been to shut the door and hide myself away from everyone while doing treatments. But a part of sharing my honest life is keeping the door open and letting those I love see and experience with me this life with CF. 

To follow more of Ashley's personal account of living with CF check out her personal blog.

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 : A Love Story

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. 


CF and Love - it's a complicated, complex, and at times an incredibly heartbreaking journey. But, it also is what makes every breath all the sweeter and so very meaningful. It infuses hope into the past, present, and future.

Today, we are sharing a moving and honest post written by Jessica Bean from her personal blog on Health from the Heart. Jessica, a tenacious woman with CF from Australia, poignantly shares the impact CF has on a relationship, on thinking about the future, on what a life-saving therapy means, and on living with fervent hope. Please enjoy her powerful words.

Orkambi: A Love Story (Part 1) by Jessica Bean

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 : A Testament to Love

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 complexity of CF extends far beyond the sticky mucus that fills the lungs, pancreas insufficiency, and skin dusted with salt- it's felt within every emotion, relationship, and mood. Living with CF can be both mentally and physically exhausting and that can often times come out upon friends and family. Today's guest post by Chrystal is an honest and real portrayal of the struggles of living with CF and the impact it can have on those closest to her. It also is a great testament to love and always finding gratitude for those who are willing to share in the journey of living with CF. 

"It's happened again.  I'm at the end of a long day of family activities and the exhaustion crept up on me...until it pounced suddenly and I snapped.  I think any mom can relate.  The three year old wants to play dress up with jewelry and I'm too tired to sit up straight.  Let alone see straight to fix the tiny clasp of a necklace.  She doesn't understand why I'm short with her.  She tries though.  She'll ask if I need a therapy, or she'll put her little hand on my chest and close her eyes for a few seconds.  And then announce that I'm all better.  So cute.  

There's a part of me that hates that she has to know I'm sick.  When I'm struggling to breathe or when it hurts to inhale deeply, she watches me closely and seems to understand.  Maybe it's a gift I'm giving her, the gift of empathy.  Of seeing another person in pain and stopping what you're doing so that you can sit and be with them.  

Then there's my husband.  What a saint!  When CF literally takes my breath away and I need a therapy immediately, I can get pretty testy with anyone who gets in my way.  It just feels so urgent, the need to breathe.  And it is urgent.  But I've found there's a difference between what's urgent and what's important.  In the big picture, my need to breathe is not any more important than his need to feel appreciated.  

Even though it means sacrificing his needs at that moment, he consistently does whatever i need so that I can get my therapy done.   I find cf to be a task master at these times, my lungs demanding the relief that comes with airway clearance. So uncompromising, and potentially so hard on a marriage where compromise is essential. My dear husband will postpone his plans if our little girl isn't in the mood to sit through one of mommy's therapies.  They will leave the house so I can focus and do my best therapy possible.

What tears me up is when I catch myself snapping at him because, even though he's sacrificing his plans for the evening, I think he's not moving fast enough.  I forget his very important, though seemingly not urgent, needs.  In my haze of breathlessness I overlook the fact that he needs to hear an encouraging word from me.  A grateful word.  A long, heartfelt embrace.  Those things speak to him and meet his needs.  Even though, in the moment of exhaustion, I feel like I barely have the energy to breathe through my last therapy of the day.  Especially then, I need to pause, look him in the eye, and tell him how much he means to me.  How I couldn't do it without him.  That I like his sense of humor.  That I like him, period.

When we were dating, I told him I might not live long enough to celebrate any meaningful anniversaries.  Like a 10 year anniversary.  My thought was perhaps he would want to choose a different spouse that he could more likely grow old with.  His response, which I'll never forget, was "I don't care if I only get you till you're 30 or 40 or 50.  I want you."  Wow.  So sweet.  He is still the sweetest man I've ever met.  And the most forgiving.  

There are no guarantees in life, and I've learned that first hand.  I thought it was guaranteed that I wouldn't make it to 40 years old.  I thought I would never have a child of my own.  And I thought I could never respect and adore Lucas more than I did when we were dating.  But I find my admiration growing with every selfless act of my faithful husband.  Thank you, Lucas!"

- About Today's Contributor - 

Chrystal is a 42 year old with CF.  She has her degree in elementary education with a minor in family ministry. Her passion is her family: husband of 17 years, Lucas, and three year old daughter, Hadassah Joy.  In her free time, Chrystal enjoys rough housing with her dogs, playing at parks with her daughter, and discovering new restaurants to enjoy with her husband. Read Chrystal's other contribution to Breathe 3-65 - Chrystal & Lucy

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.