Meet The Mother of The Month of September

 

 

God doesn’t give you any more than you can handle….I just wish he didn’t trust me so much.  Who knew how true these words would be back in the early 90’s when I moved to Montana on a whim with a road-map, learned to drive a tractor, and met the father of my children.  My daughter Jessika was born in January 1994.  By March she had her first sinus infection.  She was sick from day one, and my “mother’s intuition” must have been on high alert, because I kept bringing her to one doctor’s appointment after another with no answers.  I started to doubt myself, and wondered if I was one of those hypochondriac parents.  Jess had constant sinus infections, coughed all the time, and would eat more than most grown men.  We also called her “little miss poops a lot”.  I still feel bad about that one!   Chase was born in June 1996, and while he didn’t have any of the sinus or coughing issues, they shared the same digestive issues.  I just assumed that was our normal.  Little did I know at the time. 

I had taken Jess to the same doctor 11 times in 2 years.  He finally sat me down in the office and told me “there is nothing wrong with your child.  You are looking for something that just isn’t there”.  I was angry at myself, and did a lot of doubting and a lot of soul searching.  I finally realized that this guy had no idea who I was, and knew nothing about me.  He also didn’t realize how stubborn I could be. I paid attention to that nagging feeling in my gut that something was wrong, and took Jess to another doctor – the pediatrician who happened to be on call the night Jess was born.  She was diagnosed with Pneumonia, and given multiple antibiotics.  We were told to come back in 10 days.  Our new Dr. saw Jess after 10 days, and still didn’t like what she saw.  She told me she wanted to do a sweat test to rule out cystic fibrosis.  I agreed, got the appointment set up in Great Falls, and walked out the door to the office.   She called me later that day, and asked me to come back into her office.  She wanted to discuss this cystic fibrosis thing, because as she said, “you didn’t react enough”.  I had no clue what I was getting into.  Jess was diagnosed on October 17, 2002.  She was 8 years old.  She remembers the day of her diagnosis, and what it was like to be “normal” before that day.  2 weeks after Jess’s diagnosis, we headed back to Great Falls to figure out a treatment plan.  Our whole family was asked to attend this appointment, as this would affect us all.  At the last minute, they asked if we could come in early for Chase to do a sweat test, since this is a genetic disease; just to rule it out.  Chase was diagnosed with Cystic Fibrosis that same day; on November 1st, 2002.  He was 6.

I immediately became the care-giver, home nurse, medication organizer, treatment scheduler, transportation specialist, hospital-stay emotional support parent, and air-way clearance enforcer; along with my normal “mom” duties.  I also learned to accept the highs and lows of having children with Cystic Fibrosis.

Jump ahead a few years (or 17), and I have two amazing, supportive and loving adult children, who both have learned to live with their CF on their own terms.  Jess graduated from Montana State University in 2016 with a degree in Early Childhood Services.   She is playing Roller Derby and hopes to start her Master’s program in the near future.  Chase will graduate from MSU in May 2020 with a degree in Music Education.  Believe it or not, he plays the trumpet.  Both my kids have chosen to not let CF define who they are.

I am no longer the caregiver.  I am no longer in charge of ordering medications, scheduling doctor’s appointments, or spending weeks on end in the hospital with one or both of my kids.  I no longer have to fight with the insurance company over not paying a claim.  That is something Jess and Chase both have to now do on their own.  I do however continue to worry.  That will never go away. I also celebrate their accomplishments with them! I have faith, and hope that both my kids were raised to be strong and independent.  They both have taken charge of their lives and their health, and I couldn’t be prouder.   They say the hardest part of parenting is succeeding.  I think I succeeded.

Cody Dieruf passed away in 2005, just a few years after my kids were diagnosed.  We had the honor of meeting Cody very briefly at clinic one afternoon; although we didn’t know it at the time. She was a beautiful young woman who took the time to have a conversation with Jess about medications, all-day-long clinic appointments, and their futures.  After the foundation was started, and we met the Dieruf family, we saw pictures of Cody, and realized who she was.  That is a memory I will always cherish.

The Cody Dieruf Benefit Foundation has been instrumental in helping my family succeed.  By helping CF kids with medical or travel expenses; sports activities that are so important to our kids’ health to being general ambassadors for our kids; the Cody Foundation has been a blessing!   From day 1 it was evident that the foundation felt that personal connections with CF families were important.  This is a lonely disease, as CF patients are recommended to not be in close proximity to each other.  We now have an amazing group of moms’ who can share our joys, fears, triumphs and concerns.   We will all get together towards the end of September for the 3rd annual CF Mom’s Retreat, “We Walk Tggether” and I can’t wait to see what we can accomplish! I’m blessed to be a part of this amazing group of women. 

Has this journey with Cystic Fibrosis been easy? No. It’s hard, and it hurts, and it’s a blessing, and there has been so much joy.  I cherish every minute with my kids. My family is amazing, and this foundation family is equally amazing.  I guess God really does trust me, because through it all, with faith, determination and just plain stubbornness (and this supportive group!), I’ve survived.

Cody Dieruf Benefit Foundation hires new Executive Director

 

Thank you to all our family, friends, and supporters who have been walking this journey with us throughout the past 15 years.  We know you will continue to walk by our sides in this new venture of our exciting news.

The Cody Dieruf Benefit Foundation is excited to announce the hiring of Pam Western as our new executive director.  Pam is a visionary with a tender heart. She brings with her over 24 years of experience in the nonprofit field. “I am so honored to be working with CDBF and can not wait to see how we can expand our impact in the coming years.”  Pam has lived in Bozeman for the past 27 years with her husband and four children. Pam is a true believer in the mission of the Cody Foundation.  She wants to continue to carry on the legacy of Cody Dieruf who passed away from complications of Cystic Fibrosis and to fulfill Cody’s wish of helping those living with this disease.

 

Meet Tonya – Mother of Month for August


by Tonya Egelston

LIfe is a beautiful struggle.

This is a beautiful family with a house full of love. We are so humbled to meet mom, Tonya at our Mother’s Retreat.

Our story started in 1994, high school sweethearts. Married on June 10, 2000. We knew we wanted children and excited to start the next chapter of parenting. In 2001, our beautiful daughter Rhionah was born. She was 6lbs 12oz, she was just perfect and healthy. Cayden was born on May 22, 2003, a little boy weighing in just over 7lbs. The perfect blessings a boy and a girl it couldn’t get much better than that.

It was our 3rd wedding anniversary when I received the call from the pediatrician. She explained there was the new Newborn Screening in NY, and it shows Cayden tested positive for Cystic Fibrosis. She started asking questions about Rhionah then 21mos old. I explained I wasn’t familiar with CF, and hadn’t had any concerns with Rhionahs health or anything. Ill never forget the moment they said kiss her and if she tastes salty that’s usually a main sign she also has it. So, of course as any parent would, I kissed her, and tears just rolled down my face, yes she too was very salty.

When Rhionah & Cayden were diagnosis, we recall not knowing what the future would hold. It was so scary to hold your babies close, in a room full of Drs hearing the words progression, life expectancies, sports and activity may be limited….that made us wonder what time would bring for their health and our family. As you can imagine we were taken back & trying to work through the emotions, along with trying to be optimistic. We wondered if a cure would be found. What new medicines will help our children live stronger, better, and longer lives.

Our life philosophy had always been “Everything happens for a reason”, so with that we decided to find the why, and the way to cope and power through the storms. We were going to be the difference to ensure and made every effort to make CF stand for “Cure Found”. We got involved in fundraising activities, some close friends collected money and we went to the nearest walk. This is what we knew we needed to do. So we did! We became involved in Fonda Great Strides in May of 2004. We had to make every effort to make a difference for not just our children, but, for all those who are battling CF. Fast forward to 2019 our Fonda Great Strides has been going strong for 16 yrs now. Our family has grown from 2 to 5 children. We followed our dreams of having a big family. We waited 6 yrs to decide if it was in our plan to move forward. We contemplated, for awhile, but we came to the conclusion that this is what we needed to do and if we did not, then we were allowing CF to win. That just wasn’t about to happen in our life. We were in control, we were leaving it in the hands of what was meant to be and we were ok with that. It was our family’s decision. We talked with the kids and we moved forward. Each pregnancy we never found out what we were having and we never did further testing to determine the CF status. Onaleah- 9/carrier, Easton-6/no cf gene, Reil 3/carrier.

Rhionah and Cayden are independent, confident; they are athletes, animal lovers, and powering through life. Rhionah is now graduated from HS, heading off into the field of beauty in Sept. She hopes to carry on her passion with horses and own her own boarding facility one day. She has a steady boyfriend for 16 months, is happy, and making the most of her life. Cayden moving into his Junior year and driving, he’s a great athlete, he is working hard weight, training with a trainer to gain more strength and muscle so he can be his best. He loves golf, basketball, baseball and track and does his best despite the ways CF tries to hold him back. They both have CF related liver disease, and Rhionah has had many more complications with her liver and spleen. Cayden had a g-tube to aid in gaining weight. They are on a daily regime of medications, nebulizers, and treatments. Their lungs and PFT’s have been exceptionally good throughout their journey thus far in their lives. They have been visiting the CF clinic here in Albany NY since 2003, every 8 wks.

We are blessed to have an amazing team of Drs, family, Friends, and to live here with amazing communities surrounding us and providing support the last 16yrs. Each one played a key part in our world of CF.

I could go on with the details of how CF has tried to restrict the children or our family, the hurdles we have jumped over, tripped up on and those we broke through. But our story has many chapters, as does yours. We have been strong advocates that it’s all in how you power through. It’s not about the diagnosis it’s about how we face it head on, how we decide to spread awareness, how we handle the challenges, and not let them defeat us. We decided early on for us, we couldn’t keep the kids in a bubble; sure many times we were scared, we wanted to but…..we had to keep it real. We never wanted them to allow CF to define them, never hide behind this part of who they are, we wanted them to live, to experience everything they could without fear they couldn’t, or shouldn’t. We have met some wonderful families along this journey, we have been involved with so many CF activities, lucky to be apart of amazing foundations supporting families with CF. We have heard others stories of success, sadness, hurt, and happiness. The Mothers retreat in Montana- “We Walk Together” is one of my fondest memories. This was the first time I could gather with others affected by CF and truly relate. The tears flowed uncontrollably with so many bottled emotions, so many fears released, and so many friendships gained. I traveled with other moms from my area, we met people from so many other states. We gathered to become one and that we did. Soul sisters forever. All of these moments and experiences have and will continue to help define our journey.

I am confident we haven’t done it all right, but feel proud of what we have done. I have moments I feel sad thinking I could have done this or that, but in the end yes its exhausting, its hard, its emotional, my husband and I both work full time jobs, but we find our balance. We find the beauty, and the determination in our children’s eyes, this makes us smile and fight to give them the quality of life they so desire and to make the most of each breathe of each day! Being their mother is the best blessing life has to offer me. They are the hero’s in our story and continue to teach everyone around them about strength, determination and perseverance.

“Life is a Beautiful Struggle”

7 year old Reece loves to dance!

 

 

7 year old Reece is such a Gem!  She has cystic fibrosis, but it won’t stop her.  Reece says she “lives to dance”. She is doing tap, jazz and advance tumbling. Reece’s mom says “dance keeps Reece healthy, and helps boost her confidence and personality. She is becoming so strong and flexible”.

The Cody Foundation is honored to be a part of the happiness that is given to Reece with the opportunity to add dance to her lifestyle. You dance, Reece, “until your shoes run ragged”

Thank you to all of our donors who make this happen. It is because of you that Reece gets to do what she loves, and that is dancing. 

The Cody Dieruf Foundation offers Recreation and Fitness scholarships to those in Montana who are living with cystic fibrosis.

We Walk Together

The Cody Dieruf Benefit Foundation is gearing up for it’s 3rd annual “We Walk Together” Mother’s Retreat for moms of cystic fibrosis children.
 
We are very proud of this program. CDBF does not charge a mother to attend this three day retreat held at the 320 ranch, in beautiful Big Sky Montana in September of 2019.
 
We Walk Together retreats are uniquely powerful opportunities for learning, sharing, reflecting and relaxing.
 
This is a gathering where a group of mothers step away from their regular lives to learn from wonderful trainers and from each other and head home empowered with ideas and support.
 
We Walk Together is designed to unite mothers who have children with cystic fibrosis and find a common bond of strength.
 
If you would like to help send a mother to our mother’s retreat please hit our donate button.

Meet Dallas

 

 

We are so proud of 9 year old Dallas.  She loves to attend Camp Equinox in the summer.  Dallas says that singing, dancing, art, and acting are her favorite things to do.  Camp Equinox of Bozeman gives Dallas new friends, and while she is learning how to respect others, she learns how to cooperate with others with confidence.

Dallas says, “that dancing helps clear out the gunk in my lungs, singing helps me open my airways and acting is good for the brain”.

Well, Dallas, we believe you are right and CDBF is most happy to grant to you, Camp Equinox this summer.

A big salute to Dallas.

 

Meet Taralynn Horton – Mother of the Month for June

Meet our Mother of the Month for June – Meet Taralynn Horton and her family.

Tara says, At three months our oldest son was diagnosed with Cystic Fibrosis. A few years later that diagnosis was taken away and we took our luck and ran for the hills feeling blessed. 14 years later all that changed and not only was my son again diagnosed with CF, but my 3 other kids as well.

Our lives have now changed forever. Whether it be for better or for worse, we will wait as God’s plan unfolds. It has not been easy keeping up with appointments and treatment schedules, but my kids don’t let their new disease stop them from living their lives. In fact I would argue that because of the disease, my kids are making an extra effort to live their lives to the fullest.

My oldest has since started a YouTube channel for his music and plans to expand further on that. My youngest son now goes to Friday Night Magic almost every week and wins something new almost every time he goes. My girls spend their lives now doing ballet and ice skating and I know as their mother I may be bias but they are truly amazing at what they do! Our kids are Portland 17, Memphis 15, Phoenix 7 and Brooklyn 6.

If I could, I would take the disease away from them in a heartbeat, but seeing my kids now and how far they’ve come I would not trade their past because I know that they have a bright future ahead of them. I am not just a proud mama but the proudest mama. I love my kids and know that only good things are in store for them.

Meeting up with other mothers of children with CF in Montana at the “We Walk Together” mothers retreat is the highlight of my year. Being with other women, if only for a short time, that know-I mean truly know what you are going through is so incredibly healing and gives me the strength I need to be the best mom I can be.

The Cody Dieruf Benefit Foundations 3rd annual retreat is a beautiful 3 day retreat at the 320 ranch to be held in September of 2019.

www.breathinisbelievin.org

Stephanie Quayle is Coming to Town – “If I Were a Cowboy”

Because of our Empowerment Sponsor Chef’s Table Truck and Catering, we are bringing to you A Night of Hope.  This is a private event, and tickets are selling fast.  We expect a full house.  We will bring the house down.  Listen to us on XL Country on May 8, at 8:30 and hear all about it.

Monies raised through this event will go directly to helping our Cystic Fibrosis families living within 7 counties, and providing scholarships for Recreation and Fitness, and our Mothers Retreat for moms of cystic fibrosis children.

A Night of Hope is in memory of Cody Dieruf, Eli Tripp and Bridget Mallo and all those with Cystic Fibrosis.

We care, because breathinisbelievin.

 

Meet Elaina Pyke – Mother of the Month of May

 

Meet Elaina Pyke. Elaina is one of our special mothers who has attended our “We Walk Together” Mother’s Retreat. It is always so inspiring to read the stories of our mothers as time passes. This is not only Mothers Day month but also CF Awareness Month. Happy Mothers Day to all of our moms of CF children.

My name is Elaina, I’m a single parent of 3 incredible children Lillyan 15, Olivia 8 and Mario (aka Baby Mario) 4 years old. Mario has Cystic Fibrosis (CF).

Mario’s father and I found out we are CF carriers after prenatal screening during my pregnancy with Olivia. She does not have CF, but inherited a CF trait. Baby Mario was diagnosed prenatally at 26 weeks via amniocentesis results came back positive down to his genetic mutation Homozygous Delta F508 which affects the digestive and respiratory system. The diagnosis was later confirmed with both new born screens and sweat test.

Life with CF for us isn’t black and white, we have 2 crazy households that seem to function at their best. We’re living and learning our way of life with CF along the way. Hell yes our routines can be hectic, treatments don’t always occur at the same time of day, but hey, they get done.

Reminding ourselves to have grace is often forgotten but so important for us to move forward. I learned the importance of giving myself grace during the 2017 Montana We Walk Together Mothers retreat. I’ve also sparked a passion to become more involved with the CF community, but I wasn’t sure how and when…

Once 2019 came around, multiple opportunities arose and I decided to take advantage of them. I’m extremely excited to be a member of the Mary Bridge CF Parent Advisory Board and looking to joining the Mary Bridge Hospital Parent Advisory Council as well. I find fulfillment in advocacy and I’m looking forward to undertake these positions as a CF mother and representing our community the best way I can.

With all these opportunities evolving in my life I’m proud to say I’m still connected to the best group of women I ever met on our Montana Mothers Retreat FB group. It’s reassuring to know I’m not alone and we’re all traveling one hell of a journey with CF together.

Ladies Night at Schnee’s Downtown Bozeman

YOU are invited to Schnee’s downtown on May 2, 2019 from 6:pm-8p.m for Ladies Night. Watch for great raffles and prizes. This event is presented by Schnee’s and Keen. The night before GIVE BIG.
 
Proceeds to benefit Friends of Hyalite & The Cody Dieruf Benefit Foundation. Two great causes joining forces in partnership with Schnee’s. Mark your calendars.