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Tune in to this mini episode to learn what my exciting, big announcement is! It's a very special project I've been quietly working on for years & cannot wait to share it with you all!
Donate to Hurricane Helene recovery efforts in NC here
Donate to Hurricane Helene recovery efforts in FL hereBe sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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In this episode I welcome back (for a repeat appearance!) Director of Community Engagement of Global Genes, Mr. Daniel DeFabio. During our conversation, we dive deep into the many facets of advocacy that we, as rare parents and caregivers deal with. Daniel shares his vast knowledge and experience in the rare disease community and together we break down the eight different types of advocacy that every rare disease parent/caregiver or patient can engage in.
From policy advocacy to school support, Daniel explains how each form of advocacy plays a vital role in making an impact, whether you’re new to advocacy or a seasoned advocate looking to expand your influence. We explore how these various types empower families, patients, and communities to drive change at both a personal and systemic level.
Tune in to gain valuable insights on how you can take actionable steps in your advocacy journey, no matter where you are in your path, and learn more about the incredible work of Global Genes in uniting the global rare disease community.
Daniel's 8 Stages of Advocacy Article
Learn more about Daniel DeFabio
Register for Global Genes Patient Advocacy Summit
Learn how to tell your story
Beginners guide to rare diseaseBe sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Enjoy this solo catch-up episode! Some things I bring up during this episode:
-Our kid's starting school (homebound vs. in person)
-Roman's upcoming SIXTH birthday & fundraiser
-Dealing with ignorant comments online
-What quality of life means to me and my children
-Upcoming weekend trip I have planned (without the hubby and kids)!
-How it felt turning 36 this summer and officially entering my SELF LOVE era
Listen to my episode on the Rarely Normal Podcast
Listen to my story episode on the Rare LifeBe sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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I am back this week with a lovely conversation with the wonderful Jessica Patay, Founder & Executive Director of the non profit We Are Brave Together. In this episode we talk about the importance of respite as a caregiver, her experience as a mother and caregiver to her son, Ryan, who is living with Prader-Willi syndrome, how her non profit came to be, as well as the new anthology they recently released called "Becoming Brave Together," along with so much more. Happy listening, friends!
Buy Becoming Brave Together on amazon
Learn more about We Are Brave Together
Follow them on instagramBe sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Send us a text
For our very belated Father's Day episode I have my favorite baby daddy & life partner on, Donald to recap our incredible week at Disney for Stella's Make-A-Wish trip. We talk about some of our favorite things we did there and share some tips to other medical parents who are considering a MAGICAL trip to Disney. Happy Listening, friends!
Feeling overwhelmed by the challenges of raising a medically complex child? Join me at the upcoming Powerful Medical Parenting Summit! We will explore strategies, resources, and support to help you tackle isolation, uncertainty, and exhaustion. The best part? Registration is FREE! Sign up today!Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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With the passing of Memorial Day weekend, we get to another anniversary of our D-Day. 5 years since our entire lives were flipped upside down. Join me during this mini solo episode as I share some things I wish I could go back and tell myself at the time of Roman's diagnosis, knowing what I know five years in.
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Welcome to the podcast, Megan Craft! Megan is a Speech Language Pathologist, wife and mother of two, who saw an unmet need in the community when she kept hearing from parents of her patients that their children were not represented in books. She felt called to do something about it, so she started her children's disability inclusive book series called Mission: Inclusion. Through her series she is working towards expanding diversity of book characters to include children with varying types of disabilities. She draws inspiration for her characters from all the children/adults who she has previously worked with during her SLP career. The theme behind the character stories is to show young children that we are all different and that is what makes us important. It helps readers learn to accept and find commonality with peers to raise awareness and increase the inclusion of their peers in various environments.
Get a started in the Mission: Inclusion series HERE
Follow Mission:Inclusion on instagram @mission._.inclusion1622
Purchase Margo & You on amazonBe sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Send us a text
In honor of Roman being home for one whole year from our terrifying 2 month PICU stay, I decided to compile a list of all my must-haves while I am inpatient with my child. I also share other tips for holding onto your sanity while you are in the midst of a long and unexpected hospital stay with your child. Happy listening, yall!
Shop all my inpatient must-haves below:
https://www.amazon.com/shop/confessionsofararediseasemama/list/35OEIGSFEA1H4?ref_=aipsflist_aipsfconfessionsofararediseasemamaBe sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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I hope ya'll have a pen and paper to write down ALL the amazing travel tips this week's guest shares with us! Kristy Cook is a mother of four (one who is diagnosed with a rare form of Epilepsy) & the founder of Accessible Adventures. She believes that nature is meant for EVERYONE and is very passionate about accessible travel. This week she shares more about her family, how they got started in all their accessible adventures, and shares so many travel tips for families of medically complex children. Happy listening, friends!
Learn more about Kristy and her family's travel adventures:
https://accessibleadventures.net/index.html#/
Follow them on instagram: @accessible.adventures
Blog post for most accessible east coast beaches in US:
https://wonderswithinreach.com/2023/05/most-accessible-beaches/
$7 Track Chair Google Map:
https://accessibleadventures.net/product.html#/
Universal Changing Table map:
https://www.changingspacescampaign.com/Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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There are SO many complex emotions that come along with the question of potentially having more kids- ESPECIALLY if you have one (or in my case, two) that have severe medical needs. There are many pros and cons to weigh and it's something that has been weighing heavy on my heart lately as my husband and I (and our kids) get older. Join me for a good old fashioned solo episode this week as I share my internal struggle with this and what I have come to realize lately.
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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This week I sit down with founder and host of The Rare Life, Madeline Cheney. She started her podcast in 2020, but the seed was planted 3 years prior—when doctors found troubling results at her 20-week ultrasound that pointed to a rare syndrome during her pregnancy with her second child. She and her husband Juston have two beautiful children, their 7-year-old daughter Wendy, and their now 5-year-old son Kimball. I have been a long time fan of the Rare Life, so I was so excited to talk with Madeline and learn more about her and her family's unique journey. We talk about ALL the things including what is was like during her pregnancy knowing her son had a rare condition, our not so great first encounters with Palliative Care, the family dynamics between a disabled and non disabled siblings, family planning/IVF, and so much more. We also touch on a few of my favorite episodes of The Rare Life which are linked below for you all to check out! Happy listening, ya'll!
https://therarelife.org/
https://www.instagram.com/the_rare_life/?hl=en
https://www.facebook.com/p/The-Rare-Life-Podcast-100039719031110/
Episode 130: Fearful of Child Loss/Anticipatory Grief
Ep. 95: The Parable of the Pain Scale
Ep. 99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins
Ep. 19: The Story of ClaireBe sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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This week I sit down with the beautiful, wise and talented, Alena Kupchella Gourley. Alena is a Licensed Social Worker, Clinical Hypnotherapist, psychic, medium and spiritual guide, who specializes in hypnotic healing and past life regression.
Alena works with her clients to heal current or past relationship issues, physical, mental or emotional traumas or pain, such as phobias, anxieties, addictions, depression and anxiety, improving sports performance, stress management, weight loss and a positive body and food relationship. Self-Love, Self-Acceptance and Self-Forgiveness is the driving force behind her work. After Roman's diagnosis, I dove into all sorts of different therapies- anything to help me get past all the depression and anxiety I was feeling. My sessions with Alena have been so healing and transformative for me, so I'm so excited to share our conversation with you all.
The way Alena has uses the grief and trauma she has experienced in her life as a way to grow and evolve spiritually and continue to help others heal is so inspiring to me.
*Trigger warning for this episode: child loss, stillbirthLearn more about Alena and the services offered at http://www.celebrateeverystep.com
Find her podcast at https://celebrateeverystep.com/blog/
You can find more content and community interaction at http://www.facebook.com/celebrateeverystep
And on http://www.instagram.com/celebrateeverystep
Free guided meditation and hypnosis sessions at http://www.youtube.com/user/alenakg
Schedule a free consult call and Find upcoming sessions, classes and courses at
https://celebrateeverystepscheduling.as.me/
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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It's been a whirlwind month, so I'm catching you all up on what's been going on with us lately during this episode. I also touch on some of the inevitable feelings of jealousy I felt over the holiday and how I was able to move past them. Happy Listening, friends!
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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This week I have my friend, Brittany Markham, on the podcast to chat all things fundraising! Guys, I am in awe of all that Brittany has been able to accomplish since her son Damian's ASMD diagnosis. She has raised over a million dollars toward research for treatments for ASMD. Over. One. Million. Dollars. As I'm sure you all know, the pressure us rare parents feel to raise money for our children's diagnosis' on top of ALL the other stresses that come along with raising a child living with a rare disease is no joke. This episode we talk about (rare disease) mom guilt, what it's like to witness our kid's regression, how Brittany manages it all, fundraising expectations, and her journey with her son Damian's diagnosis. Happy listening, friends!
Follow along Damian's journey:
https://www.savedamian.com/
Youtube
Instagram
Facebook
TikTok
GoFundMe
Listen to our other episode with fellow ASMD mama, Taylor Sabky: https://podcasts.apple.com/us/podcast/family-planning-after-a-diagnosis-with-special/id1621317686?i=1000589245647Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Send us a text
I'm officially a workin' woman again, guys. Okay, well let me clarify- a PAID working woman :)
Join me in this episode as I give some life updates on what we've been up to and the feelings and emotions I have had as I made the decision to go back to work (super part time). Happy listening, friends!
If you feel called to donate to help the innocent children who are being affected in the Gaza and Israel Emergency you can do so HERE.
Donate to the International Red Cross HERE.Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Send us a text
Have you experienced FOMO as a special needs parent? Of course you have. We all have. In fact, for us, it's a daily struggle. There are SO many more things for us to consider when asked to do something: is it handicap accessible? Will it be too much stimulation and trigger more seizures? How many people will be there? Will they be exposed to too many germs? What if they get sick again and end up back in the hospital? Will there be somewhere where we can change them?
This week I reflect on a couple significant FOMO experiences I have had lately with my kids, how I handled them, and how I refocused that grief into gratitude. Happy listening, friends!
Pre-order your CAREGIVER COMPASS here!Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Has this thought ever crossed your mind as a parent with a life limiting illness or condition? You are not alone. I recently had a listener reach out to me and suggested this as an episode topic (thanks Sara!). She said she has struggled with the thought that somehow her son's terminal diagnosis was her "karmic wake up call" to be a better person and couldn't shake the feeling that maybe some poor choices she made in her 20's led her to this. Am I a believer in karma? Absolutely. HOWEVER, I definitely do NOT think that our children's diagnosis' are just bad karma coming for us. I cannot lie though; the thought did cross my mind at the beginning of our journey. This episode I dive deep into this idea and all my thoughts surrounding it. Enjoy!
Do you have thought's on this topic? Or maybe you have another topic you would love to hear me cover on a future episode? Contact me HERE. I'd love to hear from you!
If you are loving the show, please take a moment to drop a rating and review below!
Learn more about May We Help HERE.
Listen to Jillian's speech about the impact they have had on her family HERE.
Learn more about Visionaries + Voices HERE.Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Whew! The past few months have been BUSY. I'm going to catch you guys all up on this episode. As always, thanks for joining me on this wild ride. Happy listening, friends!
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Send us a text
There was a time, back at the beginning of our children's diagnosis, where we thought traveling was just no longer an option for us. We just didn't see how it was doable to ever go on a vacation with not just one, but two children in wheelchairs (and A LOT of medical equipment). Just the thought of it alone was incredibly overwhelming. As we gear up for our third family road trip with our kids next week, I wanted to share some of my top travel tips with you on ways to decrease your pre-trip anxiety and ensure the smoothest trip possible with your kiddos. Traveling with medically complex kids may take a little more planning for us and strategic packing, but it's definitely doable!
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Welcome back! Join me this week as I fill you all in on what's been happening in our life over the past couple months (and why my stress and anxiety has been through the roof lately), the importance of taking care of your mental health as a caregiver parent, and why I decided it was time to start taking my anti-depressants again.
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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