May You Never Take One Single Breath For Granted.

May you never take one single breath for granted.

To be grateful for each breath, is something we should practice every day. Not everyone has the ability to fill their lungs with ease. I’ve grown up knowing that. It is because of Cystic Fibrosis, that I feel so vastly that my lungs should never be taken for granted. Every breath, every inhale and every exhale. The way my respiratory system is so intricately and beautifully made. My body, for being healthy and carrying me throughout my journey of life. I refuse to not practice gratitude. To be grateful, every second, for another breath, every day for another day to experience life. I am grateful.

We should not take moments for granted. We should not take our time here, on this earth, for granted. We should not take our bodies for granted. We should embrace every second. We should inhale the goodness and the grace we have of another day of life.

Today, I will bask in the goodness of another day. I will be grateful. I will not take a single breath for granted. I will take my body as high and low as it can go. These moments, this life and my body- are not forever. I will make every second as beautiful as I possibly can- however I choose to.

Today, I am grateful for each breath.

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https://barefootbabysite.wordpress.com

18 year old Madison Ivey never got to grow up with her cousin Cody, who passed away from Cystic Fibrosis, but she holds her close to her heart. From a very young age, Madison would see a butterfly or hear a song and would know that it was Cody making herself known.  She says that, “I feel that Cody is always giving me a sign, leading me to believe that I am on the right path”. ” Madison says that “Cody is her angel on this earth, always dancing to her own beat of the drum”.

Meet Mike and Kat Porco with Attain Health.

 

 

Attain Health was created in 2016 through the collaborative efforts of Mike and Kat Porco from Red Lodge, Montana.

Attain Health empowers patients with cystic fibrosis by partnering with them to develop the skills necessary

to optimize daily care and regain control over their health. Attain’s platform of Integrative  Health

and Physical Performance Coaching offers clients the opportunity to set personal health goals,

develop implementation plans, establish positive habits and overcome inevitable setbacks to

achieve their vision of health.

Attain Health has served over 125 members of the cystic fibrosis community.

Together, we can make a world a better place.

http://attainhealth.today

 

 

65 Wellness Wishes

A special Thank you to Meghan’s Light Inc.  Sometimes people are brought into our world for a reason.  Meghans Light was formed by Meghan’s family after cystic fibrosis took her life at the age of 39.  
The Cody Dieruf Benefit Foundation is in the planning stages for their 2nd annual Mothers Retreat and Meghan’s Light Inc. is sending a mother from the New York area to this retreat in beautiful Big Sky Montana.
We are forever touched by the goodness of others in this fight against cystic fibrosis.  From near and far we help each other.  Words can not describe how incredible and compasionate Meghan’s Light portrays.  From Boston to Montana, our journey begins to get to know each other better.
 
Meghan’s Light, whose mission is to support finding a cure for cystic fibrosis and to inspire hope and courage in patients, families and communities impacted by cystic fibrosis. Meghan’s Light remembers the light without and the light within that radiated from Meghan during her earthly journey and the continued presence of her light that shines brightly today.

Being a CF Mom

 

Robin Modlin, mother of Anna with CF and Sara without CF 

I always wanted to be a mom. My first child was my entry into a special type of  motherhood. At 18 months old and being kept alive with a ventilator in the ICU Anna was diagnosed with cystic fibrosis. I was devastated. My whole sense of self, my identity as a mother, as a woman wanting a family, changed. Anna survived that bout and came home. I became a mom of a CF child. There was so much to get used to. Our routines revolved around treatments and eating and avoiding illness. This is the way it is in a household with a CF child. I had to decide how I was going to do this job, this job of motherhood that was so very different then I imagined it to be. How would I mother a child whose life expectancy was so unsure? Right away I realized that if her life was to be short there would be many blessings for us and if she should break the odds and live a longer life there also would be blessings. Who was I to say or know what it was to be? This was Anna’s path and I was to be the best mother I could be to help her realize who she was in whatever length of time she had. I had to let go into the unknowable. 

It has been that letting go into the unknowable that has been such a significant part of my life as Anna’s mom. I have come to understand that even with all of the statistics of life expectancy and the real fear and reasonable expectation of death right around the corner we really don’t know what is to become of our children with this disease. Each CF child has his/her own story to be lived. There are trends and there are dear children who still die much to young in spite of the better care available today and there are those who do not get sick until long into adulthood. And there are miraculous treatments like lung transplants that totally change the experience of this disease. It is just that when we begin this journey we don’t know which it will be. As CF moms we all begin on that same ground and in order to survive we must befriend the unknown. 

We have to take each day as it comes. Good days bring relief and difficult days bring tears, tension, fear and pain. Taking care of our selves as mothers is crucial. We want to meet each day as the best mom we can be. We also need to know ourselves as people with other talents and wants. We need to carve out time for our healing and personal expression. This can be difficult at best when our children are struggling, but we must. I did this for myself as I raised Anna. First of all I had a strong CF community in CFRI and I made sure that I got away on my own, that I had quiet time and did things I loved to do. Sometimes I did not do it until I was almost ready to pull my hair out, but I did it. Self care, meditation, exercise, private retreat and art work saved me.

My daughter is about to turn 37 years old! How did that happen? She received new lungs 7 ½ years ago and our lives totally changed again. Her life is still uncertain, as is mine and yours but she has lived hers to the fullest. I still have the pain of being a CF mom. I don’t think that ever leaves. Because of that, 4 years ago I started CFRI’s original CF mom’s retreat called Embrace. Last year I also helped to design and implement the Cody Dieruf Benefit Foundation’s CF mom’s retreat, We Walk Together. We have welcomed CF moms from around the country to develop a community, learn about self care, and have a respite. The amount of healing that happens from the moment the moms enter and then must go home back to their lives is remarkable and such a gift. Magic happens when moms can be part of their tribe with others who “get” what their life is about. We have watched them to continue to support each other between retreats as well. This has been the missing piece for us moms. What has been missing in CF care is the recognition of the caregiver’s need for well being. Moms need to learn that it is OK to take care of themselves and be offered permission and ways to do so. I am so heartened by the tremendous success of Embrace and now We Walk Together. CF moms need each other, need to tell their stories, need to listen and need to be heard.

A Mom Shares her Story! We Love You Jeremy.

 
Jeremy is the younger of my two children with Cystic Fibrosis. He was born two months after my daughter’s diagnosis. He was a loving little boy, making people laugh, incredibly sensitive to others with “ imperfections.” Teachers and professors adored him, peers flocked to be with him.
He was always the more ill of the kids, but he took everything in stride, entertaining nurses and doctors at the hospital- he quickly became the nursing staff favorite.
He began drawing at an early age, becoming an incredibly talented artist by his teens- he had one of his pieces chosen for a local museum when he was in high school. He graduated with a dance in his step, and a PICC line in his arm.
Jeremy went on to study art/ graphic design for three years. The summer of his third year he got an infection his body couldnt fight off. He held on and fought for three long weeks in the ICU until the end. He turned 21 on life support and earned his wings just 11 days after that birthday.
Now, my daughter fights for both of them, continuing to enroll in the clinical trials they did together…and we are left with rooms full of his art and pictures of him with his beautiful smile.. I often wonder what he would be doing now, had he beat that last infection, and I miss him with every beat of my heart💔💔

A Mom Tells her Story. We Love you Jeremy.

Lauri says: Jeremy is the younger of my two children with Cystic Fibrosis. He was born two months after my daughter’s diagnosis. He was a loving little boy, making people laugh, incredibly sensitive to others with “ imperfections.” Teachers and professors adored him, peers flocked to be with him.
He was always the more ill of the kids, but he took everything in stride, entertaining nurses and doctors at the hospital- he quickly became the nursing staff favorite.
He began drawing at an early age, becoming an incredibly talented artist by his teens- he had one of his pieces chosen for a local museum when he was in high school. He graduated with a dance in his step, and a PICC line in his arm.
Jeremy went on to study art/ graphic design for three years. The summer of his third year he got an infection his body couldnt fight off. He held on and fought for three long weeks in the ICU until the end. He turned 21 on life support and earned his wings just 11 days after that birthday.
Now, my daughter fights for both of them, continuing to enroll in the clinical trials they did together…and we are left with rooms full of his art and pictures of him with his beautiful smile.. I often wonder what he would be doing now, had he beat that last infection, and I miss him with every beat of my heart💔💔

Young man hero to a little girl with Cystic Fibrosis!

 

About two years ago, I had the pleasure of being able to meet the bravest, most intelligent, full-hearted little girl that I would ever get to meet. It was early December, the “Christmas hype” as I like call it, was in full affect. My mom, Denise Lampi-Kok, is a bartender at a local brewery in Billings. When May would be in treatment in Billings, her mom would always stop in to be waited on by my mom. They formed a friendship through her visits, which lead to them planning an evening where my brother and I could go and watch “Merry Christmas Charlie Brown” while eating popcorn and sipping on some hot chocolate with Maylie.

            The minute I walked through the door I felt an instant connection with May. I had enough of an understanding about CF (Cystic Fibrosis) to know that what she goes through every day is no simple task.  I felt for this young girl like I hadn’t anyone before; the best way I can describe the feeling is that I needed to protect her, be there for her. I remember how smart she was already and such a young age. Being homeschooled by her mother, it came to no surprise to me her level of intelligence!

            I remember when we were saying goodbye to her that day at her hospitalization,  she told me that she loved me. Hearing that from her nearly brought me to tears. I knew from that moment that I wanted to do more. I wasn’t able to see May when she would be in Billings during the summers, due to my baseball schedule, but my mom would always visit and spoil the girls whenever they came into Uberbrew.

            After school began in the fall of my senior year, May was back in the hospital for treatment. Being a part of the Billings Skyview cross country team, I thought it would be a really cool idea if some of the varsity members could come down and meet May. My team really went all out for her! They got her flowers, a balloon, sparkling water, and a stuffed bear (We named it falcon being that our cross-town rival are the bears).

            My last visit with May was during my Thanksgiving break. I had just got back home from college, Boise State, and I had heard that May was in the hospital again. I had planned out an evening of watching the Polar Express, while eating some snacks. I also had to bring her sister and her some Boise State t-shirts! After I left that evening as she was falling asleep, she told her mom that she had one of the best nights of her life. I can honestly say, that I shared that feeling with her.

            May has shown me in the last three years of knowing her what it takes to be strong. It’s not the overall size of the person, but rather the size of the heart that defines strength of an individual. I recently was emitted to the hospital for pains in my side and had to stay overnight. Though I was terrified of what might be wrong with me, I kept thinking of May and her strength to help me through my pain. Not many people could have touched me the way she did.

She always has me feeling like, what can I do that’s more than I’m doing now? What can I do to help? I’ve decided to ask for donations to provide to the Cody Dieruf Benefit Foundation because of what May has done to make my heart grow, and I’m hoping that others may find the will to give, just like May did to me.

www.breathinisbelievin.org