Today we’re diving into an issue which is important to Meske and affects thousands of Oklahoma families, though it doesn’t always get the attention it deserves: early developmental screenings.

Meske provided We Saved You A Seat with lots of statistics:

• 65% of Oklahoma children between 9 and 35 months old are not receiving developmental screenings.
• Early intervention from birth costs ≈ $37,000 per child. Delayed intervention starting at age 6 costs ≈ $53,000. ➝ $16,000 more per child when we wait.
• In a 2016 Quality of Care report, OHCA shared that only 16.4% of children received a developmental screening during their first three years of life.
• The same 2016 report also noted that 56.5% of children aged three to six covered by SoonerCare received recommended well-child visits, compared to 72.2% nationally. https://www.okhca.org/about.aspx?id=22619
• Every $1 spent on early screening and intervention yields up to $17 in societal savings. (Healthcare, special ed, justice system)

When kids are identified early for developmental delays or challenges, it can change the entire trajectory of their lives. They can get the support, resources, and interventions that help them thrive at home, at school, and in their communities. When screenings don’t happen — or happen too late — children and families are left struggling, and often the cost to both the family and the state is much greater down the road.

This conversation is especially important right now, because an interim study on developmental screenings is scheduled at the Oklahoma State Capitol on October 2nd from 9:00 to 11:30 AM in Room 5S2. 

This study was introduced by Representative Ellen Pogemiller and it grew from a constituent’s story — Meske and her boys’ journey through the system. Meske knows firsthand why early screenings matter, and today she’s here to share how her family’s experience is shaping policy conversations at the state level.

If you care about giving kids the best start in life, here’s one simple action you can take whether you are able to show your support in person or not- contact your legislator and ask them to attend the October 2nd interim study. The more lawmakers hear these stories and see the data, the better chance we have of building a system that works for families across Oklahoma. 

We encourage people to be there for this interim study or watch online-if you're a parent on this journey, an educator, therapist or someone who just wants to learn more, there is something for all of us to learn.

If there is a resource out there, there's a good chance Meske has found it. Meske has been trained in Trust-Based Relational Intervention (TBRI), Partners in Policymaking (PIP), Parent-Child Interaction Therapy (PCIT), Circle of Security and so many others.

In this episode, Meske provides us with a glimpse into her experience with SoonerStart, Early Head Start, the struggle of trying to navigate public transportation, and highlights so many other wonderful resources Oklahoman's have access to, but doesn't always know where to find them or who to ask.

This episode truly mentions and speaks briefly on some of the resources Meske has utilized or knows about and we have provided links to all of them below, should you want to know more.

Meet Meske!! 

Meske will provide a voice from the mom, advocate, and survivor perspective at an interim study designed to highlight the need to improve access to developmental screenings to Oklahoma's youngest children, and we want you to know her and understand the why behind her passion. 

This is episode one of three, where you get to meet Meske and learn about Meske as a mom, advocate, incredible human and friend! 

Note From Meske:

"I’m not an expert in any formal sense. I don’t have a degree or credentials. Life circumstances interrupted every graduation I ever worked toward. What I do have is knowledge, experience, and perspective — a life lived in very diverse circles, literally and figuratively on both sides of the tracks.

My childhood wasn’t bad, but it was heavy. I had access to social circles some people only dream about, but life took me in a different direction. Mental health struggles, relationships, finances, global events — they all influenced my path. And while I’ve made my share of mistakes, most of the time it felt like life kept handing me situations I couldn’t control.

That’s how I came to my personal tagline: “I’m usually the exception to the rule. The medical mystery. I don’t fit in anyone’s box. The only kind of luck I have is bad luck — so I’m not a betting person.”

But over time, I began to realize my life had a bigger purpose. These experiences — the good, the bad, the unfair, the painful — weren’t meaningless. They were shaping me into someone who could see people differently, connect more deeply, and speak honestly about what most people avoid.

Still, things got worse before they got better. An important person in my childhood used to tell me to have “faith the size of a mustard seed,” so I started carrying one with me. But faith didn’t erase the pain. Time doesn’t heal all wounds, it just lets them scab over. I realized I had grown comfortable in chaos because it was familiar.

There were lessons along the way — sometimes only in the form of cliché sayings that became lifelines. And then came the next chapters: marriage, military service, two kids, deployment, divorce, relocation, three more kids, building a business, domestic violence, housing instability, PTSD, developmental disabilities, and trauma stacked on trauma. That’s where I found myself three years ago.

Since then, life has still been full of ups and downs. Healing doesn’t stop life from happening. Kids still need love, bills still come due, people still take advantage when you let them. But the difference is that I finally began prioritizing myself, setting boundaries, and holding on to integrity and accountability. That’s when the people I needed started finding me.

Along this journey, I’ve been trained in TBRI (Trust-Based Relational Intervention), Partners in Policymaking, PCIT (Parent-Child Interaction Therapy), and Circle of Security. I’ve worked on early screenings and even contributed to an interim study. Those experiences gave me language for what I had already lived — and tools to help my kids and others “from hard places” not just survive, but start to heal.

That’s the lens I bring to this conversation: lived experience, layered with training and advocacy, all rooted in a belief that stories — even the messy ones — can change systems and change lives."

The State Maternal Health Innovation (MHI) Program is one of many complementary investments made to improve maternal health across the nation. Oklahoma’s State MHI Program has partnered with the Oklahoma Family Network to help improve maternal health by providing OFN an opportunity to share family stories of those touched personally by critical health outcomes during pregnancy or soon after giving birth. 

The power of educating others with personal experiences can and will improve future maternal health outcomes for our community, and we thank Darrian for sharing pieces of her journey.

If you or someone you know has experienced health complications or illness that occurred during pregnancy, childbirth, or the postpartum period, and you are ready to share your story for the purpose of awareness and education, OFN would love to connect with you.

Oklahoma’s State Maternal Health Innovation Program has partnered with Oklahoma Family Network to help improve maternal health by allowing OFN to share family stories of those touched personally by critical health outcomes during pregnancy or soon after giving birth. 

Oklahoma Family Network would like to thank this sweet mother as she shares her experience with a lupus diagnosis, pregnancy, and premature birth.

If you or someone you know has experienced health complications or illnesses that occurred during or after pregnancy, childbirth, or the postpartum period, and you are ready to share your story for the purpose of awareness and education OFN is ready to help.

Thank you for listening in today.

Oklahoma’s State Maternal Health Innovation Program has partnered with Oklahoma Family Network to help improve maternal health by allowing OFN to share family stories of those touched personally by critical health outcomes during pregnancy or soon after giving birth. 

Oklahoma Family Network would like to thank Chrissy for sharing her experiences surviving postpartum cardiomyopathy and the impact it has had on her health. 

Understanding signs, symptoms, and treatment is important from a self-advocacy perspective as well as healthcare team member. 

If you or someone you know has experienced health complications or illnesses that occurred during or after pregnancy, childbirth, or the postpartum period, and you are ready to share your story for the purpose of awareness and education OFN is ready to help.

Thank you for listening in today.

#HydrocephalusAwareness #HydrocephalusDiagnosis #OurJourneyWithHydrocephalus #EpisodeOne

Thank you for joining us for the second episode with guests Matt and Laura Samargis, as we continue to highlight and honor this incredible family during Deaf-Blind Awareness Month. (You can listen here to Episode One)

In this episode, Matt and Laura share impactful moments and resources for living in rural Oklahoma. 

What an honor to meet and visit with Matt and Laura and know you will enjoy hearing more from them today.

Special Resources:

Active learning spaces (Activities for deafblind learning and movement) 

Paths to literacy (educational resources for deafblind)

Central Michigan University (Online intervener classes)

Beth Kennedy-CMU deafblind department director 

Matt and Laura's Samargis, a family from rural Oklahoma share with us today some of their journey as parents who have a child in the deaf-blind community. Today we get a glimpse into their incredibly busy lives and I know you will enjoy hearing their unique testimony and learning more from them.

They share some of their favorite resources with us today, and you can find their links below:

Oklahoma Deaf-Blind Technical Assistance Project

Oklahoma School for the Blind

National Center for Deaf-Blindness

Oklahoma School for the Deaf

Lisa is passionate about helping and serving families who have children with unique medical needs, and this is a resource we want to celebrate and share.

https://www.ou.edu/education/centers-and-partnerships/deaf-blind-project

Lisa Lawter, Ph.D.

Project Director 

Oklahoma Deaf-Blind TA Project 

University of Oklahoma 

Department of Educational Psychology 

820 Van Vleet Oval, Room 321 

Norman, OK  73019 

405.325.0441 

405.325.6655 fax 

Friend us on Facebook at Oklahoma Deaf Blind Technical Assistance Project 

Lora Roberts, Eastern Regional Coordinator for Oklahoma Family Network, helps us understand Sibshops for brothers and sisters who have a sibling with special needs. She shares more about her Tulsa Sibshops experience and what families can expect when they bring their child.

Understanding healthy boundaries in our relationships is essential to taking care of ourselves. Join us for a class as we work through misconceptions and proven strategies that help you set healthy boundaries for yourself to help in all of your relationships.

If you'd like to watch the training and view Lauren's slides, please joining us on our YouTube Channel: https://youtu.be/xuz2yg8P8S0

Celebrating Rare Disease Day with double the podcast release today!

As we continue to celebrate and honor the day set aside to bring awareness to our incredible families with a rare diagnosis, I want to thank Sky Collins for sharing in our previous release about Oklahoma Rare.  She continues on to share more about the personal diagnostic journey their family experienced as they tried to advocate and find answers for their youngest daughter, Presley.

We also thank Presley for allowing her mom to share pieces of her diagnostic journey.  And anyone interested can purchase Presley's book here:

#OklahomaRare #MalanSyndrome  #OKRare  #RareDiseaseAwareness  #UltraRareDisease  #EveryLifeFoundation  #PartnersInPolicy  #SB207  #SenatorCarriHicks #RareDiseaseDay #RareDiagnosis

Every year, on the last day of February, the world comes together to recognize Rare Disease Day—a global initiative dedicated to raising awareness for rare diseases and the millions of people affected by them.

Today, We Saved You A Seat is incredibly honored to share a few things Oklahoma is doing to help bring awareness, advocacy, conversation and support to and for those impacted by a rare diagnosis.

Today, Sky Collins is here to discuss the incredible community group, Oklahoma Rare, of which she is a co-founder and shares ways you can get involved.  

Addition Resources Mentioned:

#OklahomaRare #MalanSyndrome  #OKRare  #RareDiseaseAwareness  #UltraRareDisease  #EveryLifeFoundation  #PartnersInPolicy  #SB207  #SenatorCarriHicks #RareDiseaseDay #RareDiagnosis

In this presentation, we will discuss how to set goals for positive change for all ages while still having a self-compassion focus. This can help us break the pattern of shame about things we want to change and instead apply simple but profound principles for effective growth.

If you would like the presentation handouts please email:

erin-parks@oklahomafamilynetwork.org

Sometimes we are so focused on behavior that we don't realize how powerful purposeful relationships can be in responding to negative behavior and preventing things from ever happening. We will look at the work of Dr. Lori Desautels and her book Connections over Compliance to learn brain-based strategies for connecting with kids and responding to and preventing frustrating behaviors.

Welcome to National Wear Red Day 2025!

After finally getting a diagnosis of Postpartum Cardiomyopathy, Chrissy learns what her future looks like and shares with us how she processed this unexpected diagnosis and what she did to survive as a mom who needed lots of help from doctors, family, and friends.

To learn more from the American Heart Association about Postpartum Cardiomyopathy (or Peripartum Cardiomyopathy) visit the American Heart Association's website.

On December 11th, 2024 Chrissy Cleary proudly announced, "awww my Heart Failure is 18 - an adult." 

Chrissy Cleary is mom to three children, and after she delivered her 3rd baby, she developed some scary symptoms that some medical professionals identified as "normal" and/or wrote off as anxiety.

In this episode of We Saved You A Seat, Chrissy describes truly easy and wonderful pregnancies, her dreams of motherhood, and having a large family. Her dreams were interrupted soon after the birth of her third child.

Thank you, Chrissy, for sharing your story of strength with us and allowing us to honor you this February and bring awareness and conversation to Heart Health during and after pregnancy.

Being a parent or a caregiver can be exhausting. We can become so overwhelmed by the never-ending list of things to do that we lose sight of taking care of ourselves and can experience burnout. Together we will complete a survey of how we are doing with self-care and build a practical plan to help us take better care of ourselves so we can also take care of the important people in our lives and avoid burnout. 

Although this session was recorded in December, it is full of great information reminding us compassion fatigue is very real and takes a toll on those who are caregivers.

Presentation Power Point

Happy World Down Syndrome Day (3/21)!!

World Down Syndrome Day (WDSD), March 21st, is a global awareness day officially observed by the United Nations since 2012.  This day encourages conversation and education to help end the stereotypes and encourage inclusion.

Today, Carter's Mom and Sister highlight some of the amazing resources and advocacy they have been involved in as they support Carter and others with Down Syndrome!  

Tomorrow is World Down Syndrome Day, and TODAY we want you to meet Carter and his family in our first release of our two-part series highlighting and celebrating those with Down Syndrome.

Today's conversation walks you through some of the emotional moments tied to learning Carter would have Down Syndrome, as well as, his delivery, NICU stay, his first surgery, and some thoughts from his sibling, Cassie.

Carter has his very own TikTok channel: https://www.tiktok.com/@carters_kitchen18

Part two of our conversation with Charity and Cassie will be released tomorrow as we celebrate World Down Syndrome Day! 

#WorldDownSyndromeDay #CrazySocks #DownSyndromeAssociation #DSACO 

Oklahoma Family Network is thankful to have you join us today for the final release in this series and conversation with Charles, to help us celebrate what makes Charles III unique as we celebrate Rare Day today!!!

You will hear Charles brag on his daughter Zion and speak to the sibling relationship that Zion has with her little brother, Charles III. He also discussed tips he has for those in the community on engaging him and Charles III in conversation when you see them out and about.  And last, but certainly not least, we wrap up our great conversation with Charles putting the disability label away and tells us about his incredible son and his big personality!

Charles has big goals and dreams; and wants others to know about SibShops through SoonerSuccess.

• While each disease may be rare, collectively, they impact a large number of people.

• 300 million people worldwide live with a rare disease.

• There are over 6000 different rare diseases.

• 72% of rare diseases are genetic.

• 70% of these rare genetic diseases begin in childhood.

#CdLS #ShareYourColors #Rare #LittleLighthouse #SoonerSuccess #SibShops

• While each disease may be rare, collectively, they impact a large number of people.

• 300 million people worldwide live with a rare disease.

• There are over 6000 different rare diseases.

• 72% of rare diseases are genetic.

• 70% of these rare genetic diseases begin in childhood.

#CdLS #ShareYourColors #Rare #LittleLighthouse

• While each disease may be rare, collectively, they impact a large number of people.

• 300 million people worldwide live with a rare disease.

• There are over 6000 different rare diseases.

• 72% of rare diseases are genetic.

• 70% of these rare genetic diseases begin in childhood.

• While each disease may be rare, collectively, they impact a large number of people.

• 300 million people worldwide live with a rare disease.

• There are over 6000 different rare diseases.

• 72% of rare diseases are genetic.

• 70% of these rare genetic diseases begin in childhood.

Are you being kind to yourself?  Lauren Alvarez walks us through Mindful Self-Compassion and some amazing training she provided to Oklahoma Family Network families. I know you will be encouraged by her words and knowledge.  

Lauren introduces us to a self-compassion test, and we encourage you to take the no right or wrong answers test to learn a little more about yourself and how you can become aware of your own self-compassion.  Take the Self-Compassion Test

Thank you for joining us for part two of Kayla's journey with premature birth as she shares her experience where she highlights some very specific emotions and experiences tied to Zetta's birth.   

Welcome to Prematurity Awareness Month!

Prematurity Awareness Month is observed every November, with World Prematurity Day on 17 November, to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide. An estimated 15 million babies around the world are born premature each year and more than one million of them do not survive their early birth.

Today, We Saved You A Seat, visits with Kayla Pitts, mom to Zetta who was born at 26.1 weeks gestation.

Her conversation (broken into 3 parts) highlights maternal mental health in the perinatal and postpartum period, her preterm delivery, breastfeeding, and treatment options she pursued for her health and family.

The Author of Leon The Brave Little Lion joins us today to discuss how his experiences with childhood cancer gave him a purpose and vision to support others who are part of his childhood cancer circle.

OFN's conversation with Andrew will leave you feeling encouraged, educated, and inspired to love and support families in unique and beautiful ways.

Part three of our conversation with Jade shares the importance and impact that local non-profits have on families.  You will hear Jade share just a little about some organizations that made big impacts on their family:

The Kids Korral, KClub, Wyatt's Wings, and Art with Heart are a few examples of organizations that touched the Campbell's lives and will continue to leave an impact on other families fighting childhood cancer.

You will also hear an update on how Haddie is doing now; and we never want to leave out siblings.  Siblings who are being touched by a brother or sister fighting cancer, play an important role and are impacted as well; and this conversation shares some of the real and raw moments involving siblings in that care.

On behalf of the Campbell Family, thank you for listening today, supporting them, and praying for Haddie (and others) as childhood cancer impacts so many in our communities.

Part two of We Saved You A Seat's conversation with Jade highlights the amazing community Jade and her family have surrounding them.  Hearing how Jade's family, friends, and community surrounded and supported Haddie will give you ideas and inspire you to help others impacted by childhood cancer.

Today you have the incredible opportunity to meet Jade Campbell and hear pieces of their daughter's journey and diagnosis of B-Cell Acute Lymphoblastic Leukemia.

As we continue to honor families who have experienced or are experiencing the childhood cancer journey, today we are reminded to celebrate, encourage, and cheer on the families who are fighting for a healthy future.

We are releasing our conversation with Jade in three parts today and we know all who hear, who are fighting for their healthy future, will feel encouraged and inspired...

Part One: Diagnosis

Part Two: Friends, Family and Community Support (Ideas to help others)

Part Three: Resources, Sibling Support, and Update on Haddie

The Mack Impact | The Mack Impact

This release is one that openly shares and discusses the truth of pediatric oncology and the grief, no family should ever have to experience. It is important to help raise awareness, support, and educate our community that when this happens to a friend of the cousin to a neighbor who lives three doors down from you, you can help guide them to a resource tied to people who will love them and help carry them through the hard.

Thank you for being a part of this community and sharing stories of strength.

We are well aware of the reasons people don't discuss pediatric cancer... It's hard...

It's hard to think about. It's hard to think about any child experiencing cancer. It's hard to think about the possibility of your child experiencing cancer. We can become overwhelmed with grief and sadness as we imagine these things happening to others, especially children, and then deep sadness when we have to face the truth that it does happen, and when it happens, some don't survive.

Today we get to meet Mackenzie Asher, through the eyes of her daddy... You hear the hard, the love, and the strength!!

Mackenzie's family started a 501(c)(3) nonprofit organization in her honor, and you won't want to miss some of the amazing things they get to do for Oklahoma Families who are fighting life threatening illness.  Things these incredible kids and families wouldn't get to do without their help!

Visit:  Mackenzie’s Story | The Mack Impact today!!

Our guest today is Long Tran with F.A.I.T.H. KIDS, Inc. (https://faithkids10.org/).

Long, with his wife, Mary, started a 501c3 nonprofit organization, after their family lived through the devastating experience of their oldest having leukemia to help others.  In today's podcast, you will hear pieces of their journey and learn more about how you might be able to help children and families living with cancer and other life-threatening illnesses.

F.A.I.T.H. KIDS hosts an annual bowling tournament to help raise funds for families Fighting Against Illness To Heal (F.A.I.T.H KIDS)... This year's tournament, on Saturday, September 30, 2023, will be held in Edmond, OK at Bowlero Edmond (3501 S. Boulevard, Edmond, OK 73013) and truly there is something for everyone!!  

As we help kick off Childhood Cancer Awareness Month, we hope you will find FAITH KIDS, Inc on Facebook and other social media platforms, follow, and share their information so that we can unite to bring awareness, education, conversation, and support to others who might be facing life threatening illness. 

Lauren talks us through logical consequences, the energy drain, and working through different perspectives of discipline and why we do what we do as parents.

Presented By:  MaryAnn Badenoch

Keynote

5 Love Languages of Children

Presented By:

Lauren Alvarez

Are you being kind to yourself as the holidays approach?  Lauren Alvarez walks us through Mindful Self-Compassion through some amazing training she provided to Oklahoma Family Network families, and I know you will be encouraged by her words and knowledge.  

She introduces us to a self-compassion test, and we encourage you to take the no right or wrong answers test to learn a little more about yourself and how you can become aware of your own self-compassion.  Take the Self-Compassion Test

Cheryl has extensive knowledge regarding Adverse Childhood Experiences (ACEs).  She displays expertise when presenting and training agencies' staff about developmental trauma and its effects on the brains and behaviors of children and family systems. She has experience presenting to large groups and training multiple lessons that build a foundation for trauma-informed care. She also has proficiency in consulting with agency leadership and coaching staff to use researched strategies and interventions to increase resilience. Cheryl brings real world experience and stories to her training from her 17 years of experience working in public schools as a counselor. ​She is certified in Traumatic Stress Studies by The Trauma Center and Trauma Research Center, is certified in ARC (Attachment, Regulation, Competency) Trauma Treatment for Children and Adolescents, and has completed training with Laura Porter and Dr. Rob Anda of ACE Interface to become a NEAR (Neurobiology, Epigenetics, ACEs, Resilience) Science trainer in Oklahoma.  She is a Licensed Professional Counselor and a Nationally Board-Certified Counselor and School Counselor.  She holds a master's degree in Counselor Education from Syracuse University. (creatingresilience.org)

Creating Resilience, LLC (creatingresilience.org) exists to train groups of individuals to respond and support people with trauma histories and Adverse Childhood Experiences (ACEs). Creating Resilience uses trauma-informed strategies to build safe environments, calm and focused behaviors, and increase competency and executive functions. Research shows that the power of one strong adult relationship is the key ingredient in overcoming adversity. Creating Resilience will foster strong relationships.

#ACEs #CreatingResilience #Trauma #TraumaInformed #Resilience #AdverseChildhoodExperiences

Cheryl Step, MS, LPC, NCC, NCSC Trainer/Consultant Creating Resilience, LLC creatingresilience.org 405-612-9432 cstep.cr@gmail.com

Per 501(c)3 rules, it is important to note that Oklahoma Family Network cannot and does not endorse any one candidate for any reason.  The purpose of this podcast is to bring awareness, conversation, education, and support to families who have children with special health care needs or disabilities.  Ellyn's personal journey takes her to candidacy-level advocacy, and you will hear about some of that today.

Thank you for joining us today on the Oklahoma Family Network's podcast to learn more from families who have children with special health care needs and disabilities and hear ideas on how you can get more involved with advocacy efforts in your area. 

Understanding and explaining to parents what ABLE accounts are, is only one of Ellyn's great talents!! 

In today's podcast, Ellyn educates everyone on what OK STABLE accounts are and how to use them.  She also addresses the need for continued advocacy work in Oklahoma to keep ABLE accounts a top priority for families with children with disabilities as they plan for their child's financial future. 

Ellyn also shares, how her experience and graduating from Catholic school provided desire and drive to help her children receive the same educational opportunities.

Per 501(c)3 rules, it is important to note that Oklahoma Family Network cannot and does not endorse any one candidate for any reason.  The purpose of this podcast is to bring awareness, conversation, education, and support to families who have children with special health care needs or disabilities.  Ellyn's personal journey takes her to candidacy level advocacy, and you will hear about some of that today.

Thank you for joining us today on the Oklahoma Family Network's podcast to learn more from families who have children with special health care needs and disabilities and hear ideas on how you can get more involved with advocacy efforts in your area. 

Part two of our conversation with Ellyn has highlights and conversations focused on big advocacy work she's done in the community and with schools.  Celebrating the 25th Anniversary of the Americans with Disabilities Act as well as her experience receiving her education from a Catholic school and having that desire for her children as well.  

25th ADA Celebration Walk Highlights: https://www.oklahoman.com/picture-gallery/news/local/oklahoma-city/2015/07/26/25th-year-of-the-ada/8769003007/

Per 501(c)3 rules, it is important to note that Oklahoma Family Network cannot and does not endorse any one candidate for any reason.  The purpose of this podcast is to bring awareness, conversation, education, and support to families who have children with special health care needs or disabilities.  Ellyn's personal journey takes her to candidacy level advocacy, and you will hear about some of that today.

Thank you for joining us today on the Oklahoma Family Network's podcast to learn more from families who have children with special health care needs and disabilities and hear ideas on how you can get more involved with advocacy efforts in your area. 

Oklahoma Family Network is incredibly happy to share the first episode of a three-part conversation with Ellyn Hefner.  After the birth of her son, William, and learning how to be the best mom and advocate for William, Ellyn, shifted careers to become a family support partner for the Oklahoma Family Network.

She became more involved at the policy level after graduating from Partners in Policymaking and she served on the Interagency Coordinating Council for Sooner Start as a member and Chair.

She has spent the last 18 years as a caregiver and professional dedicated to helping Oklahoma parents find hope and resources for their children with IDD and in today's podcast with Ellyn, you will hear about foundational experiences which have opened the door, which has led her to where she is now.

You will love hearing about Drew's two big sisters and feel encouraged by Michelle's story!!

Thank you, Weaver family, for sharing pieces of your story with us and pictures from Drew's First Christmas!!!

Today you have the incredible privilege of meeting a beautiful mom who celebrates so much in the month of November.  Her experiences within this last year have her embracing Prematurity Awareness Month, and that combined with Native American Maternal Health Month and Adoption Awareness Month, she has big items to celebrate throughout all of November.

I know you will absolutely fall in love with the Weaver family as she shares about their premature delivery last year with their son Drew.

You will also hear her mention a preemie baby book which she purchased soon after his birth, where she documented many things.  You can find that book here:  My Preemie Baby Book - Etsy

We are so excited to welcome Samantha Beckstrom to the podcast today.  You will hear her journey through an extremely preterm premature rupture of membranes (PPROM) and NICU Journey.

Thank you, Samantha, for sharing your journey with two NICU babies and helping others find strength as they experience NICU.

Stargardt Disease is a rare genetic eye disease that happens when fatty material builds up on the macula, the small part of the retina - which is needed for sharp, central vision.  Vision loss usually starts in childhood, but some people don't start to lose their vision until they are adults (Stargardt Disease | National Eye Institute (nih.gov)

Today you will hear one family's journey into discovering their son, Gabriel, has Stargardt Disease.  Gabriel's Mom, Melissa Weathers, does a beautiful job walking us through a two-year timeline, trying to figure out what was happening with Gabriel's vision.

Melissa also highlights some of the amazing people and resources they've been introduced to through the past several years, as well as shares her experience transitioning Gabriel to public school and establishing an IEP with his new school.

Resources Mentioned: Two Blind Brothers (https://twoblindbrothers.com/) New View Oklahoma (https://nvoklahoma.org/) OWL (Oklahomans Without Limits) Camp: (https://nvoklahoma.org/community-programs/owl-camps) Foundation Fighting Blindness (https://www.fightingblindness.org/chapters) Oklahoma Parents Center (https://www.okdrs.gov/guide/oklahoma-parents-center) Bookshare (https://www.bookshare.org/cms/) Dean McGee Eye Institute Pediatric Ophthalmology (https://dmei.org/services-specialties/pediatric-ophthalmology-strabismus/) Dr. Michael Siatkowski (https://dmei.org/providers/r-michael-siatkowski/)

#Stargardt #ChildrensEyeHealth #OWLCamp #TwoBlindBrothers #NewViewOklahoma #FoundationFightingBlindness #OPC #OklahomaParentsCenter #ChildhoodMacularDegeneration #CCTVMagnifier #IEP #VisualImpairment 

Happy Father's Day to the very special dads out there!!  This podcast is for YOU!!

This podcast is certainly for everyone, but especially our DADS!!!  Today we have as our guest, Jeremy Warren, Executive Director, of Dads on Special Assignment or DOSA.

Jeremy hosts a variety of activities, groups, and gatherings designed to help remind dads they are not alone in their journey of parenting a child with special health care needs or disabilities.  Dads On Special Assignment (DOSA) started with Jeremy and a few dads in his church as a ministry and has expanded into the community to help support the amazing dads who have been given a special assignment.

We are thankful for Jeremy and what he does to support dads and we are sure you will want to hear his words and heart today!  You will hear his passion, purpose and a little about, Landon, his inspiration.

Dads On Special Assignment: https://dosausa.org/

While Reese was rushed to the NICU, weighing just 1 lb, 14 oz; her sister, Ryleigh was held and loved on for the next few hours by her parents, who said hello and goodbye to their sweet girl within those short three hours of her life.

Today you hear the beautiful words of Lindsay!! You hear her story and desire to bring awareness, conversation, and support to others who may be walking through this very difficult journey of twinless-twin-loss.

We are so thankful for Ryan, Lindsay and their girls!!

#Twins #ReeseAndRyleigh #26Weeks #MicroPreemie #PPROM #PretermPROM #PrematureRuptureOfMembranes #InfantLoss #TwinlessTwin #Support 

James frequently says, "It's so important to reduce stigma and talk about mental health as much as physical health; it's not "them" it's your sister, friend, neighbor... Not them, but "us". When you have any new parents in your life, reach out and ask not only about the new baby, but how are they? Can you schedule time to hold the baby so mom can take a break? Could you set times to call or text each week so they can talk to another adult and feel more like themselves?"

James shares with us how we can get involved in our community and provides some wonderful tools which are available through the Oklahoma State Department of Health Maternal Child Health website.

Thank you for partnering with us to bring awareness, conversation, support, and education this week on the subject of Maternal Mental Health.

Community Engagement Opportunities:

OKC PSI Climb Out of The Darkness Walk: https://climbout2022.causevox.com/team/team-okc

Tulsa PSI Climb Out of The Darkness Walk Info: https://climbout2022.causevox.com/team/team-tulsa

Resources Mentioned:

Postpartum Plan:  https://oklahoma.gov/content/dam/ok/en/health/health2/aem-documents/family-health/improving-infant-outcomes/maternalmentalhealth/Postpartum%20Plan_fillable.pdf

Mothership Rising App: https://www.mothershiprising.com/how-it-works/

Family Video Stories from Oklahoma: https://vimeo.com/showcase/6597453/embed

Maternal Mental Health Website: https://oklahoma.gov/health/family-health/improving-infant-outcomes/maternal-mental-health.html

Postpartum Support International: https://www.postpartum.net/

Oklahoma Perinatal Quality Improvement Center: https://opqic.org/

The Blue Dot Project:  https://www.thebluedotproject.org/mmhweek2022

#MaternalMentalHealth #PSI #BirthingComplication #OPQIC #MCH #MomsMindsMatter #COTD #ClimbOutOfTheDarkness #MMHWeek2022 #MakingOverMotherhood

Today, as we kick off Maternal Mental Health Awareness Week, We Saved You A Seat visits with James Craig, MSW, LCSW and Public Health Social Work Coordinator for the Oklahoma State Department of Health in Maternal Child Health. 

In part one of our two-part podcast release this week, James helps us define what Maternal Mental Health is and gives us a clear understanding of when we should seek additional support from professionals who specialize in perinatal mood and anxiety disorders (PMADs). 

Thank you, James, for providing us with information today that helps us understand maternal mental health and equips us with the tools to know where to find the best types of support for the #1 complication of pregnancy and childbirth.

Resources Mentioned: 

Maternal Mental Health Website: https://oklahoma.gov/health/family-health/improving-infant-outcomes/maternal-mental-health.html

Postpartum Support Internation: https://www.postpartum.net/

Oklahoma Perinatal Quality Improvement Center: https://opqic.org/

The Blue Dot Project:  https://www.thebluedotproject.org/mmhweek2022

#MaternalMentalHealth #PSI #BirthingComplication #OPQIC #MCH #MomsMindsMatter 

Heather Pike, Associate Director of the Oklahoma Family Network shares the "why" behind what she does professionally and personally.  In our latest episode of We Saved You A Seat, Heather walks us back 23 years ago when her son, Layton, was very sick and ultimately, diagnosed with meningitis. 

Heather discusses the impact meningitis had on Layton's developmental milestones, the impact it had on his little 11-month-old body and shares how important meaningful resources were to her, as well as her desire to help guide families to those wonderful resources and helpers in our community.

Some of the resources she highlights:

SoonerStart:  https://oklahoma.gov/health/family-health/sooner-start.html

Hearts For Hearing:  https://heartsforhearing.org/

DRS Resource:  https://oklahoma.gov/okdrs.html

Become a Supporting Parent:  https://oklahomafamilynetwork.org/what-we-do/become-a-supporting-parent/

For More Information on Meningitis:  https://www.meningitis.org/

#WorldDownSyndromeDay #DownSyndrome #Trisomy21 #TrisomyAwareness #SoonerStart #OklahomaDownSyndromeAssociation #IndiaArie

Unlike Down syndrome, which also is caused by an extra chromosome, the developmental issues caused by Trisomy 18 are associated with more medical complications that are more potentially life-threatening in the early months and years of life.  Studies have shown that only 50% of babies who are carried to term will be born alive, and baby girls will have higher rates of live birth than baby boys.

At birth, intensive care admissions in Neonatal Intensive Care Units (NICU’s) are routine for infants with Trisomy 18.  Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.

Some infants will be able to survive to be discharged from the hospital with home nursing support to assist with care by the parents. And although 10 percent or more may survive to their first birthdays, there are children with Trisomy 18 that can enjoy many years of life with their families, reaching milestones and being involved with their community.  A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independently without full time caregiving. (Trisomy 18 Support at Trisomy 18 Foundation)

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Today you hear a mother share what she knows about Trisomy 18 and how it impacted her and her son, Carter.  She shares what she knows from a parent perspective and what having another baby after Carter was like.

Thank you, Caiti, for giving us a glimpse into your journey with Carter and sharing how trisomy 18 impacted your life.  Thank you for bringing awareness, conversation and education to a topic that is rarely discussed and few people know about.

#Trisomy18 #T18 #EdwardsSyndrome #ParentPerspective #Trisomy18AwarenessDay

In today's conversation, she shares her experiences calling 911, hospital visits, and ultimately Carter's passing.  Today she shares her heart and some of the very hard choices that she and her husband made for Carter.  Today she shares with us and talks about things she rarely gets the opportunity to share.

We know you will listen with compassion as a mom shares her heart and the pain associated with the death of her son.

#Trisomy18 #T18 #EdwardsSyndrome #911 #PICU 

Today we release part one of our three-episode conversation with Caiti, shedding light into their NICU journey with their son Carter as doctor's suspected something was wrong, but couldn't definitively say, until genetic testing came back.  

Caiti walks us through her delivery, diagnosis, and transition home on palliative care. 

#Trisomy18 #T18 #EdwardsSyndrome #NICU #GeneticTesting #PediatricPalliativeCare #PediatricHospice #SoMuchLove #Carter 

"I don't understand why some people, and some children, are afforded these beautiful miracles, and others aren't. I'll never be able to reconcile it because they all deserve it, they all deserve to live. They don't deserve to go through all of this pain, to be stuck with all these needles all the time..." - Natalie Alexander

#CHD #CongenitalHeartDefect #BrokenHeart #Bandaids #NoCure #HeartsOfSteel 

February may have left us, but we have one more family story to share with you surrounding the topic of congenital heart disease/defects.  It's a nice reminder to all of us, that just because the awareness month and education pieces and family highlights may end, there is a great number of families living and wondering what might happen next and when with their baby's heart.

We welcome, our guest, Natalie Alexander to the podcast.  She is super mom to three boys ages 10, 8, and 5.  Today she shares her experience getting a grim CHD diagnosis with her second baby, Sawyer.

You will hear her story of strength, hope, and perseverance; and walk away with a clear understanding, from a parent perspective exactly what a CHD is some of the things to help process the news you may receive or how to support a family walking this difficult path.

Thank you for joining us today, for part one of Natalie's two-part podcast.

#CHD #CongenitalHeartDefect #CongenitalHeartDisease #EbsteinAnomaly #HeartMonth #HeartAwareness #PrenatalHeart

#CHD #CongenitalHeartDisease #CongenitalHeartDefect #TotalAnomalousPulmonaryVenousReturn #TAPVR #AtrialSeptalDefect #ASDCHD #HeartMonth #MendedLittleHearts  

Traci gives us a glimpse into what it’s like to live with an addiction and pregnancy as she attempts to permanently conquer the addiction, which has controlled her for so long.

Please continue to listen as she shares hope, strength and wisdom for others who are trying to overcome an addiction. 

We shared at the end of our last podcast about the STAR Prenatal program; STAR stands for Substance use Treatment And Recovery (STAR); and the STAR Prenatal Clinic at OU Health Sciences Center seeks to provide prenatal care for those with an addiction and coordinate treatment and mental health services at the same time.  Please check here for more information on the STAR Prenatal Clinic:  https://oklahoma.gov/odmhsas/treatment/children-youth-and-family-services/stars-program.html

Again, thank you for joining us today and hope you will, once again, open your heart to compassionately hear more of Traci’s words and story!!

#Addiction #STAR #Recovery #Prematurity #SubstanceUseAndPregnancy #Strength #Support #Sobriety 

STAR (Substance use, Treatment And Recovery) Prenatal Clinic Information: https://oklahoma.gov/odmhsas/treatment/children-youth-and-family-services/stars-program.html

#Addiction #Recovery #PregnancyAndAddiction #STARSPrenatalProgram #SubstanceUseTreatementAndRecovery #Prematurity #NICU #Sobriety #Strength

February 7th-14th is Congenital Heart Disease Awareness Week... Go Red Day is February 4th, 2022 and the entire month of February has been designated as American Heart Month.

Today, we are excited to introduce you to Nanna Leaper, her amazing children and the impact of congenital heart disease (CHD) has on their life.  You will learn about Parker's prenatal diagnosis, his journey through multiple surgeries, and hear a little about what they anticipate for his future.

Thank you, Nanna, for sharing Parker's journey with us and giving us a glimpse into your day-to-day routine with Parker, to keep him healthy and strong.

#CHD #CongenitalHeartDisease #CongenitalHeartDefect #GoRedDay #MendedLittleHearts #CICU #NICU #PediatricHeart 

Today we welcome Melanie Hollins to the podcast as she discusses her delivery at just 25 weeks gestation.  You will hear her story and how she processed the birth of her beautiful daughter Emily.  She also speaks to the things she did that helped her survive mentally and physically, 156 days in NICU, not knowing from day to day what the outcome might be, but believing the truths she spoke out loud and over her daughter each day.

Thank you Melanie for sharing your story, family and journey!

Today's podcast takes us further and deeper into the journey after Laurel was discharged from NICU and how they worked to obtain answers that might explain some unique attributes, as well as, bring closure to "momma gut" questions.

Positive attitudes, kindness in inquiry, surgeries, IEPs, cochlear implants, and so much more are discussed in this episode.  

If you missed part one, please catch up with their story by clicking here:  https://www.podbean.com/ew/pb-gbvyb-10fc4e8

#HIE #HypoixIschemicEncephalopathy #NICU #TermBaby #40and1 #NICUAwareness #Surviving #Fighter #GTube #Seizures #MiracleBaby #NewbornHearingScreening #H4H #HeartsForHearing #Therapies #GeneticTesting #HearingLoss #KabukiSyndrome

We are excited to introduce you to Laurel O'Connor and her Moms today!!

Carrying a baby to term is one incredible experience, and when a mother reaches 40 weeks gestation, one often thinks, nothing can go wrong now.  Today you will hear Mandi and Cristina describe Laurel's delivery and NICU experience.  You will hear how their excitement transitioned quickly; their hope turns to unbearable grief; and then grief to elation as they transition home!  The transition home came with a few challenges, and today you will hear them share their journey, strength and positive outlook on life!!

We have saved you a special seat today, to hear a small piece of their journey with beautiful Laurel!!

#HIE #HypoixIschemicEncephalopathy #NICU #TermBaby #40and1 #NICUAwareness #Surviving #Fighter #GTube #Seizures #MiracleBaby #NewbornHearingScreening

Join us today and on Evan's birthday!!  You'll hear about his celebration of life and hear how his parents are processing each day without him here; moving forward, choosing joy!!

Jump in and hear how Lauren works hard to choose joy every day, about the trips they've squeezed in as they learn to move forward with Evan, and hear how Lauren anticipated and processed her plans for this day!! 

Today, Lauren and Sam, we help you celebrate your boy, Evan!!

Today you will hear a beautiful and candid conversation with a Coalition of Oklahoma Breastfeeding Advocates Board Member and IBCLC (International Board Certified Lactation Consultant) Cheryl Coleman on the tough topic of breastfeeding our baby while in the Neonatal Intensive Care Unit.

Cheryl is a retired lactation consultant. She has been a registered nurse for over 45 years and an International Board Certified Lactation Consultant for 10 years.  She served as the lead for Hillcrest Medical Center's Baby-Friendly designation. Prior to working at Hillcrest, Cheryl worked as an Education Specialist and Clinical Nurse Manager at Oklahoma State University Medical Center. She has served as a board member with the International Childbirth Education Association (ICEA) for 14 years in various capacities, including Director of Public Relations, Secretary, President-Elect and President. She was on the faculty for ICEA Basic Teacher Training and Postnatal Educator Workshops for many years. Cheryl lives in Verdigris, Oklahoma with husband, Bob. They have 2 children and 2 grandchildren. Cheryl is passionate about Sooner sports, the Chicago Cubs, Oklahoma City Thunder, breastfeeding families, and doing the Happy Breastmilk Dance.

Today, you'll hear Melanie share her story and the reason they pour their heart and soul into supporting families across the state who have lost a child to pregnancy and infant loss.

Kids Joining Eternity (KJE) partners with many wonderful organizations to help hurting or grieving families know they are not alone and there are ways to move forward with their baby, their experience, and the grief they now carry.  KJE also provides wonderful peer-to-peer opportunities ranging from coffee shop gatherings, dinner groups, family gatherings, and ceremonies to help kick off Pregnancy and Infant Loss Awareness Month.

Listen in today, as Melanie and JB celebrate and honor the life of their first born, Kendal Janae on what is her sweet 16 and discover how they help impact the lives of precious families, not only during the month of October, for pregnancy and infant loss awareness, but throughout the year.

#PregnancyAndInfantLossAwareness #KidsJoiningEternity #SweetSixteen #Stillborn #BornStill #BornSleeping #Miscarriage #InfantLoss #1in4 

While Tracy has previously worked in education and is a certified Occupational Therapist, she currently works at the Toby Keith Foundation as the Guest Relations and Volunteer Coordinator for the OK Kids Korral.  Her work supporting families experiencing a Childhood Cancer diagnosis is impactful and meaningful to those she meets.

In today's (part two) episode you'll hear how she continues to work with families through many organizations, partnerships, and programs raising funds and support for those in the community.

Her son, Mitchell, continues to have a lasting impact on those who knew him and his family, as well as, those who hear his story and their journey as a family!

We are all thankful for the impact the Whitaker family has had on the community and those around them!  Thank you Tracy for sharing Mitchell, your vision, and bringing awareness, conversation, education, and support to Childhood Cancer.

#ChilhoodCancerAwareness #ChildhoodCancer #AcuteLymphoblasticLeukemia #ALL #Leukemia #SiblingEngagement #JEC #JimmyEverestCenter #14YearsAgo #GoGold #GoMitchGo #KeepFighting #TobyKeithFoundation #OKKidsKorral #OklahomaFamilyNetwork #BeTheMatch

This month our podcast series has focused on childhood cancer awareness and we released three incredible family stories, each with  a different diagnosis and each with some really incredible outcomes.

I want to prepare our listeners today that our family story will shine a light on a piece of childhood cancer we really do not enjoy talking about, but is a conversation we want to have for several reasons. Childhood cancer sometimes has a devastating end. The child is not always cured and does not always go home after their treatment plan has ended. We want to talk about the hard, and the hardest.

This family story is a story of great strength, faith, fight, determination, never giving up, always bringing awareness, and provides each of us with information on how to live day to day when the hard turns to the hardest.  

I had the incredible privilege to interview Tracy Whitaker, Mitchell’s mom, for our podcast today and I know her words will touch your heart. I want to thank you for listening today and hearing Mitchell’s story. I want to thank you for allowing Mitchell’s name to be said over and over as Tracy shares their journey through childhood cancer and the toll it took on their family!

Many hugs and much love to the Whitaker Family today as they celebrate Mitchell's life, legacy, contributions to Childhood Cancer treatment and support for others!

#ChilhoodCancerAwareness #ChildhoodCancer #AcuteLymphoblasticLeukemia #ALL #Leukemia #SiblingEngagement #JEC #JimmyEverestCenter #14YearsAgo #GoGold #GoMitchGo #KeepFighting

Relapse... Her AML is back... now what? 

In part two of Michelle's podcast release today, you will hear what steps they had to take when Abby's AML returned.  You will hear today how they balanced life and responsibilities and found the right resources at the right time.

The Gamble family works hard to celebrate and bring awareness to the important topic of childhood cancer and today you'll hear her heart and passion as she describes how they try to impact and support the community with their knowledge and experiences.

#AcuteMyeloidLeukemia #AML #AplasticAnemia #BellsPalsy #StevensJohnsonSyndrome #10thFloor #PediatricICU #JimmyEverestCenter #JEC #ChildhoodCancerAwareness #ChildhoodCancerAwarenessMonth #GoGold #Relapse #CavettKids #TobyKeithFoundation #KidsKorral #KidsKorralTobyKeithFoundation #BeTheMatch 

Today you'll learn how Neil and Conner got involved with the Leukemia Lymphoma Society and how Conner and Neil continue their fight against Childhood Cancer and what the lifelong process of being a cancer survivor looks like.

If you missed part one of Neil's family story, here is the link:  https://www.podbean.com/ew/pb-xnufy-10d4b15

#ChilhoodCancerAwareness #ChildhoodCancer #ALL #Leukemia #ERVisits #BeTheMatch #BloodDoner #Chemo #HellWeek #Steroirds #RingTheBell #EmergencyFlightFunds #MeicalBills #Supports #EndOfTreatmentParty #LeukemiaLymphomaSociety #BoyOfTheYear #ChildLife #SiblingEngagement #JEC #JimmyEverestCenter #3YearOldWithCancer #TakeCareOfYourself #Therapy

We are excited to introduce Neil Lloyd and his precious family!  Today, Neil shares with us how he was thrown into a world he knew nothing about, Childhood Cancer!!  

Neil shares about his son, Conner, and their journey with him through and with the diagnosis of Acute Lymphoblastic Leukemia, at just three years old. Neil speaks to the impact it had on his family, the need for supports, and how he started giving back to the Childhood Cancer Community in unique ways.

Thankful for families like the Lloyds who share their stories to help bring awareness, conversation, education and supports for Childhood Cancer Awareness Month!  

#ChilhoodCancerAwareness #ChildhoodCancer #AcuteLymphoblasticLeukemia #ALL #Leukemia #Port #794DaysOfTreatment #58RoundsOfChemo #ChildLife #SiblingEngagement #JEC #JimmyEverestCenter #3YearOldWithCancer #TakeCareOfYourself #Therapy #HairLoss 

Meet Jared and Tammy Cox.  They are the parents to three amazing boys and today you will hear why Childhood Cancer Awareness Month has such a special place in their hearts!

Jared and Tammy sat down and shared their family's journey through diagnosis, supports, resources, and perspective.  Their desire to bring conversation and awareness to the hard topic of Childhood Cancer is a mission they hold close to their heart and truly have a desire to help others find a network of support and resources, as they walk a new or difficult path.

Jared and Tammy help facilitate a group called, Cultivating Connections, which brings together those who might want or need tips, ideas, or information from a parent/family perspective. 

As you listen in today, you will hear not only their story, but also their strength and heart!  You will hear their overwhelming gratefulness to those who loved them well and supported them in unique ways as they walked a hard and unknown path.

#WilmsTumor #Nephroblastoma #CultivatingConnections #PediatricOncologySupportGroup #JEC #JimmyEverestCenter #CavettKids #CavettKidsFoundation #RingTheBell #KClubKindness #TogetherWeLighthouse

You will walk away from this podcast with a better understanding of pediatric cancer and hear how Dr. Pokala personally serves families in Oklahoma with children who are experiencing pediatric cancer!!

Thankful for Dr. Pokala and so many other physicians and team members who serve families who are walking a difficult path of pediatric oncology.

At one point in the conversation with Sam and Lauren, I asked if they might share how they handle or process conversation which comes out wrong from people who love and care about them deeply.

So many of us don't have the words or know what to say, so I asked them to help know better, so we can do better.

If you missed the first piece of the conversation please go back and download the episode just prior to this one (A Cooper Penny For Your Thoughts: Episode 13).

Our conversation was heartfelt and emotional.  Lauren and Sam wished to bring the raw and real to their community who love them.  They wished to bring the hard conversation of grief to the table. And, they wished to help others who know and feel this type of heartache, to know they are not alone.  

They accomplish these goals beautifully in this conversation.

Please know we have broken the conversation into four shorter episodes, but have released them all in the same day, if you would like to listen to the entire conversation without delay.

#Menkes #EvansArmy #EvanKlingenberg 

Our conversation about private duty nursing expanded into the subtopic of TEFRA and Lauren does a beautiful job explaining how TEFRA impacted their life and helps them in so many ways!

#TEFRA #SelfCare #HomeHealth #PrivateDutyNursing #Menkes #EvansArmy

“Grief is not a disorder, a disease, or a sign of weakness. It is an emotional, physical and spiritual necessity; the price you pay for love. The only cure for grief is to grieve.” – Dr. Earl A. Grollman

Having friends and family who you can process the hard with can make all the difference.  This family spoke of and provided us a glimpse into the way in which they process grief together.  This episode is the final release of the conversation we recorded on July 31, 2021.  

There may be one or two bonus stories in this podcast as well about the Arnold family, Sibling Love and Support, and Processing Grief!!

Momma D and Lauren jump in quickly explaining some of the emotional experiences they've shared, as well as, what has provided Lauren with the most encouragement from her own momma and family!  

#Menkes #ShowUp #NoOneFightsAlone

With our first release this week we welcome Lauren's Mom, Debbie, also known as, "Momma D" in Evan's world.  You will find this episode to be full of laughs, strength, and reflection.  You will hear a grandmother share her heart and express all the joy of being a grandparent, as well as, gain some insight on what having a grandchild with high medical needs/terminal illness looks like.

This episode of "A Copper Penny For Your Thoughts" is fun, uplifting and I know you will enjoy hearing Lauren and Momma D bounce the conversation back and forth.

#Menkes #MommaD #Grandparents #Family #13PeopleComingThisWeek #EvanKlingenberg 

For those wishing to follow along in Kenna's journey, feel free to join her Facebook page: Kenna's Journey

Thank you Chelsea for sharing Kenna.  You brought awareness, education, conversation and support to many who needed to hear your words and thoughts surrounding Angelman Syndrome.

#AngelmanSyndrome #TonicClonicSeizure #HenochSchonleinPurpura #HSP #JuvenileArthritis 

We also hear from Chelsea about some unique to Kenna health concerns that have plagued her for several months.  Chelsea describes what it was like trying to be the advocate Kenna needed.

Resources Mentioned:

FAST: Foundation for Angelman Syndrome Therapeutics:   (https://cureangelman.org/)

Angelman Syndrome Foundation: (https://www.angelman.org/)

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What is Angelman Syndrome?

Angelman syndrome (AS) is a rare disorder caused by the loss of function of a single gene and affects approximately 500,000 people worldwide.

Symptoms typically become noticeable around the age of 6-12 months and may include difficulty suckling and eating, gastrointestinal issues, delayed crawling and babbling, balance and motor impairment, and seizures. Some individuals never walk, and most do not speak. And while they require continuous care, they have a normal life expectancy and a distinctly happy demeanor, characterized by frequent laughing, smiling and excitability.

#AngelmanSyndrome #FAST #ASF #Genetics #RARE