Filtering by Tag: Family

sINgSPIRE - A Night of Song

August was a pretty memorable month for Breathe Bravely - filled with meaningful milestones and events that only could be possible through the generous support and incredible work done by those who help make up this organization. Here's a glimpse into one of memorable nights:

On Tuesday, August 15, 2017 the instructors of sINgSPIRE came together to not only share a memorable night of music, but they also shared their own experiences being a part of sINgSPIRE. Those present that night were able to become a part of sINgSPIRE and be fully immersed in the life-giving impact of the program. Audience members were given a glimpse into the sINgSPIRE program, what it is all about, and the amazing progress of some of its students. Instructors shared moving personal accounts of the incredible progress and life-changing impact this program has had on both their students and on them as teachers. sINgSPIRE is giving voice to cystic fibrosis in so many different and life-changing ways. 

Here's a glimpse into some of the incredible music of the evening provided by our sINgSPIRE instructors: 

As we wrap up our second session of sINgSPIRE, we gratefully reflect on this incredible opportunity we've been able to see come to life through such passionate instructors and engaging students. sINgSPIRE has been more impactful than we could have ever dreamed and we are truly thankful for the support of the Cystic Fibrosis Foundation and each of you who has generously supported this vision and helped give it such incredible life. 


A very special thank you to everyone who helped make "sINgSPIRE - A Night of Song" come together into a beautiful and unforgettable evening. Thank you to First Congregational Church in Sioux Falls, SD for hosting this memorable night of song and graciously supporting our mission. 

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.

Giving Voice to CF - Say Anything...Jewelry by Stephanie Wilde

The most beautiful and meaningful thing about Breathe Bravely is that so many different and strong people have helped breathe life into this organization and made it all it is today. 


Stephanie is one of those people and has been a relentless advocate for Breathe Bravely from its beginning. Stephanie's own dream has been built on telling people's stories and giving them voice. 3 years ago, Say Anything...Jewelry by Stephanie Wilde joined forces with Breathe Bravely and designed its first jewelry line to help give voice to CF. Her incredible designs and meaningful work of artistry have continued to inspire and grow with Breathe Bravely. 40% of sales from the Breathe Bravely jewelry line go to support the mission of Breathe Bravely.

Last week, new designs were added to the exclusive Breathe Bravely jewelry line! Have you checked them out and ordered yours? Limited and one-of-a-kind pieces available in-store right now or order your exclusive Breathe Bravely design by Say Anything...Jewelry by Stephanie Wilde online or via phone!


Fun Facts about the Breathe Bravely Jewelry Line

  • 40% of the sales from this line go to support Breathe Bravely and their mission of Giving Voice to CF.

  • Say Anything Jewelry has a custom Breathe Bravely stamp with our unique logo!

  • Each piece is handmade. Each letter or logo is hand-stamped character by character by Stephanie herself! Making each piece unique and one-of-a-kind. 

New Items:
Collar Stays for the men $62,
Large Rose earrings $40,
Bracelet with teal leather $44,
Small Rose earrings $36.

Call 605-695-3997 to order today!  Limited quantities of each are made/ready to ship or to pick up in store. Shop now online! Use code LOCAL to save $5 on shipping. Make sure to leave your phone # so we can call you when items are available for pick up! Stop into the store in downtown Sioux Falls, order online at www.sayanythingjewerly.com, or shop Etsy. 

A deep and heartfelt thanks to Stephanie, her generosity of time and talent, and helping Breathe Bravely give voice to cystic fibrosis.

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.

Simply CF : Why We Walk

Walking is something that most all of us take for granted and the power of a single step never really crosses our mind. But a simple step for some can symbolize so very much - like for people whose lives have been impacted by cystic fibrosis. 

Great Strides for CF is so much more than just a walk. It's a significant act of empowerment, of tenacity, and of hope. Within each step lies an untouchable determination dedicated to fighting for those with CF. Fighting to give everyone impacted by CF another day to pursue and live out their dreams uninhibited by a disease vying to steal every breath. 

The Cystic Fibrosis Foundation was established in 1955 and has been at the forefront of drug research and development - leading to decades being added to the lives of people with CF. Because of the fervent support of friends and family of those with CF, the CF Foundation has been able to invest in the futures of those living with the disease - being on the cutting edge of research and a cure. Without this continued support and the creation of these life-extending therapies, many of our lives would be immensely different. It's safe to say that some of us may not be here today without such support. Each step that has been taken in the last 30+ years has made a significant impact on each life that is affected by CF. It is for each step we are so thankful.

But we are not finished.

Life-changing therapies and drugs are being created at this very moment. Drugs that could potentially give us the possibility of more steps. Walk with us this Great Strides season. Take a step for CF and every person whose life has been changed because of the disease.

Learn more about the CF Foundation.
Learn more about Drug research and the current Drug Pipeline

To learn more about Great Strides or donate to a team click: Great Strides Team 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.

Clearly Invisible : CF Adventurers

This segment of the blog is dedicated to shedding light on the invisible side of CF- striving to spark dialogue, cultivate understanding, and encourage compassion between all of us.

The CF community is comprised of passionate and driven individuals that are dedicated to changing their community for the better. This community is made up of tenacious and caring people who have been diagnosed with CF themselves, family, friends, and individuals who have been touched in some way by CF. Brad Benson, the creator of CF Adventurers, is no exception. Learn about his passion project and how he's making an impact on the CF community. 

"I am the creator of the CF Adventurers website. (www.cfadventurers.org) I myself do not have cystic fibrosis. Cindy, a friend of mine since our days at the University of Rhode Island has a now 13-year-old daughter, Amanda, who has CF. I knew about the disease in its broad outlines prior to finding out about Amanda’s diagnosis, but committed to learn much more as a result of her situation. One thing that I had no awareness of was the fact that people with cystic fibrosis cannot be around each other in close proximity due to cross contamination concerns. This really struck me as poignant and something that would be particularly difficult to deal with. Even now, years after I learned about this aspect of CF life, I find it almost impossible to really understand. So I decided to try to do something about it. CF Adventurers is the result of that effort.


As I stated earlier, I do not have cystic fibrosis. I do, however, have a disability. I have spina bifida and use a wheelchair to get around. Not an ideal circumstance, perhaps, but who among us lives in ideal circumstances, free of difficulty. It is also useful to remember that one’s own issues and problems are not necessarily the toughest challenges people face I found, when I learned that people with cystic fibrosis cannot be around each other without risk to their health, that it made me consider my own situation. I feel no great need to be around other people with spina bifida. But I have the option if I want it, with no risk to me or others I might meet. People with CF do not have this option, and that fact must be hard to come to grips with. It is my hope that CF Adventurers can help bring members of the CF community together, in virtual space even if not in person."

Take a moment to check out CF Adventurers - "This website is meant to be a fun, safe place for people who have cystic fibrosis, their friends, family members, and others to gather. Here, people with CF can chat, experience online adventure, and share thoughts, feelings, hopes, dreams, plans, fears, and strategies... this site is intended to serve as an alternative way of meeting and interacting, even if not in person.  Life should be about options, and CF Adventurers is here to give people with cystic fibrosis the option of connecting online."

 

 

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.

Simply CF : A Month of Awareness

For the 30,000 people in the United States cystic fibrosis doesn't just make its presence known one month out of every year - it is a part of every day of every year. There is no break. There is no simply forgetting about CF. There is no running from it. 

The month of May is specifically dedicated to giving voice to cystic fibrosis and all the lives it unapologetically touches. It's meant to shine a light on the tenacious individuals, families, and friends who tirelessly live with this disease 365 days a year. It's meant to highlight the strength of all those impacted by CF and the relentless dedication to finding a cure.

This month, Breathe Bravely will be sharing ways in which you can support cystic fibrosis. CF may be a powerful force, but its tenacity and strength is no match to the courage and determination embodied by the CF community.  

How are you giving voice to CF this May?

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.

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

Screen Shot 2017-04-03 at 11.52.35 AM.png

 

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.

Sing Bravely : Karaoke for CF

On Thursday, March 9 an amazing group of people came together - both steadfast supporters who have been on this Breathe Bravely journey with us from its very beginning and new friends who for the first time, heard about Breathe Bravely's dear and personal vision of giving voice to CF through sINgSPIRE.

"Sing Bravely" was a fantastic night celebrating our sINgSPIRE program - a 10 week program that combats the effects of CF through the art of singing. Students are paired with a sINgSPIRE voice instructor and take part in individual voice lessons either in-studio or via video-call. Our first sINgSPIRE session is halfway through and the excitement for the next session is incredible!

Thank you to everyone who made our night at "Sing Bravely : Karaoke for CF" so memorable and who has joined us on this unforgettable and impactful journey. 

If you weren't able to make the event but would still like to donate towards our sINgSPIRE program, DONATE HERE! I  

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 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.

Real Gratitude 65 : White Coats & Stethoscopes

The month of November on Breathe 3-65 is dedicated to GRATITUDE. Today we are grateful for each brother, sister, and friend impacted by CF. For their endless hope, drive, and unwavering support we are so very grateful.

It's inevitable for those you spend the most time with to become a part of your larger family. This is especially true when much of your life has been spent in and out of the cold sterile walls of the hospital and clinic. The nurses, techs, pharmacists, receptionists, and doctors become a special part of your family. In many ways they know your story better than those closest to you. They are with you through the hardest of times and the best of times. In moments of great thanksgiving and in moments of deep desperation. They are the silent servers who sacrifice their own time to give us a chance at more of our own. 

This Thanksgiving please take a moment to remember and give thanks for our tenacious and caring doctors, nurses, pharmacists, techs, and all others who willingly spending time away from their own families and friends to take care of those we love.

With every breath we are given, let us be thankful. 

 

 

- Did you know Breathe Bravely is an Amazon Smile organization? Shop this Black Friday and Cyber Monday for those you love while giving voice to CF. Amazon Smile

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 Gratitude 65 : Brotherly Love

The month of November on Breathe 3-65 is dedicated to GRATITUDE. Today we are grateful for each brother, sister, and friend impacted by CF. For their endless hope, drive, and unwavering support we are so very grateful.
 

CF doesn't just impact a single person in a family, it impacts every person and part of a family. Today's post is a meaningful entry written by brother, Steve Sveom, in honor of his sister, Chyrstal, who has cystic fibrosis. Read his heartfelt words that genuinely reflect the strength and awe he admires in his sister!

 

Brother Love

"Chrystal Marie is my little sister, but in many ways, I feel like I look up to her. We spent alot of time together growing up, and apart from the manual back percussions that I would help my dad with on her back, Chrystal was just as active as most every other kid on the block. This was before internet, so we played outside alot. We lived in Sturgeon Bay, Wisconsin, and many afternoons were spent playing at the park and then heading to the beach for a swim. I did not think of Chrystal as anything less than my little sister. Chrystal and I went to high school at the same school, and even though I was a little older, and spent alot of time screwing around and playing sports, I tried my best to be a good big brother. Chrystal had many friends in school, and people were, and still are, drawn to her inner strength and outspoken spirit.

After she met and married Lucas, things were a little different, just like they are for all of us after high school and college. Chrystal and Lucas had a life to build together,  and they intended to live it to the fullest. Chrystal has had to focus more on her health during much of that time, but thankfully, with Lucas' help and encouragement, and also the amazing medical advances in therapy machines and medications, they have been happily married for almost twenty years. Their lives have been blessed beyond words with the birth of their daughter, Hadassah Joy, in May of 2013.

Chrystal has always been an inspiration to me. I see her strong will to fight, and to live each day to the fullest boldly. Her faith and her family, Lucas, Hadassah and many other family and friends, all look at Chrystal as a person who has learned to live free of the bonds that CF would want to restrain her to. Chrystal has chosen to live and breathe boldly, 365. I love my sister very much, and I am proud to be her little, um, big brother!"

 

Written and submitted by Steve Sveom.

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 Gratitude 65 : What Would It Mean?

The month of November on Breathe 3-65 is dedicated to GRATITUDE. Today we are grateful for all the moms and dads who show endless amounts of tenacity and strength in the fight against CF. For their endless hope, drive, and unwavering support we are so very grateful.


Today's guest entry is written by a mother that embodies what it means to be strong, tenacious, and hopeful. Billie is the mother of two brave and energetic girls who have CF. Billie, like all other parents, wishes for nothing more than a cure for her beautiful girls. What would a cure to CF mean to Billie? Read her powerful words in today's Real 65. 

What Would It Mean?

"Rylie came home from kindergarten last week and told me that a kid at school punched her during lunch. A rocket list of questions ensued from my mouth - who? when? has it happened before? did you tell someone? On this particular occasion, by “punch” our occasionally overly dramatic 5 year old meant “accidentally elbowed”.

Nonetheless, that feeling I had when I first thought she might be the target of a bully was familiar. It’s one of the rubber bands in this massive ball of emotions that comes from parenting daughters who deal with the everyday challenges of a rare, genetic disease. I’ve never crossed paths with such an unfair and unrelenting bully as I have with cystic fibrosis.

    It’s the kind that makes my kindergartner go to the back of the line every day at lunch.

    The kind that sprays stuff up my 3 year old’s nose.

    The kind that seeks to shake my daughters every day, with no exception.

And, like most bullies, there are feelings of helplessness. I can work with her school, but I can not change the fact that the pills are necessary. I can teach her how to do her treatments and medications for herself, but sprays up the nose and shaking for hours and inhaling medicine and swallowing dozens of pills is never going to be enjoyable. Bullies like to take control, and so that becomes our mission. To slowly and carefully and intentionally give our daughters a little more say in the how and the when of their treatments and medications. The bully is still going to make them shake and they might feel beat up at times, but giving them the tools they need to take ownership of their disease is currently our best method of defense.

A cure for cystic fibrosis would mean to one day be able to make a call and the bullying stops, to fill a prescription and the bullying stops, to drive to an appointment and it stops. I wouldn’t have to to send her to school wondering if the bully would be particularly mean that day. None of this lurking around on healthy days, looking for a weak moment to strike. No more changing plans or missing out or feeling embarrassed. The bully wouldn’t be waiting at home, or at school, or on vacation or at grandma’s.

    The bully would be gone.

    That’s what a cure would mean to me."

 

 

 

-    About Today's Contributor   - 


Billie, along with her husband Ryan, are tireless advocates for their girls and the CF community. To follow Alexa and Rylie's journey with CF and read more of Billie's powerful words follow her blog "2 Sisters 1 Cure."

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.