When Autumn Comes: Seasons of Hope for Medical + Disability Moms

Every one of us is special. Every one of us needs connection. When we connect with people who are "like us," how do we find connection in rarity? Where do we go for support when we are one of a very few who share a similar story?

Today, I have the pleasure of introducing you to Brittany. Brittany's daughter Everleigh has a rare disease called SetD5. At age 3, she is one of approximately 300 others worldwide with this diagnosis. In fact, she is the only one with her specific subtype. Because of how rare her disease is, there is a lot of unknown about her future. But her present is filled with love.

Brittany shares with us the importance of advocacy, providing a voice for your child when even the doctors don't fully understand what is going on medically. She shares her tips for finding and building a community even when there are so few who share exactly what you are going through. She shares the joy and light that is Everleigh. What I especially loved is how open she was about the process. This is a journey. We all are doing our best to move through this journey one step at a time.

"I start small. I'm starting small and I will work my way up, as I can, but I'm learning." -Brittany

Here's what Brittany discussed that you do not want to miss:

• Introducing Brittany (2:24)
• All about Everleigh (4:16)
• Competing diagnoses (6:43)
• Spreadsheets and planning (10:11)
• Asking for help (14:49)
• Carrying the mental load (18:44)
• Connection in the community (22:56)
• Raising Rare (25:13)
• What gives Brittany hope (29:19)

Rare disease can be a place of fear, sorrow, and anxiety. But on the other side of that is hope, light, and joy in the small moments. I hope Brittany has shown you that there is a community out there, with others who understand what you are going through, even when you are rare. How do you find community?Let me know in the When Autumn Comes Society or send me a DM on Instagram! I'd love to hear about how this helped you.

Connect with Brittany:

@evie.thing.setd5 on instagram

RaisingRare.fm

WAC is a program of the Apricity Hope Project

Catch up with Suz:

Instagram

www.suzgeoghegan.com

When Autumn Comes:

WAC Instagram

WAC Facebook Page

WAC Society Facebook Page

Thank you so much for joining me on this journey. Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories from other members of our medical and disabled community.

If you enjoyed this episode, please leave us a 5-star rating and a review so we can reach more 4AM Moms with medically complicated, rare, beautiful children.

Hey mama. Motherhood is really really hard. Medical motherhood, foster motherhood, adoptive motherhood…motherhood in all of its many forms is hard. Regardless, every journey to motherhood is unique, and yet so very similar. What do medical motherhood and foster/adoptive motherhood have in common? We're so glad you asked.

This week's guest, Tracy shares her unique journey into motherhood. From foster mom, to no kids at home, to adoptive mom. She opens up about the challenges she has faced navigating mental health needs for her children and leaves us with a very important takeaway, and glimmer of hope.

Tracy has five children, who came into her family in different ways. She has one stepson and four adoptive children who joined her family initially through foster care. Additionally, her family has touched the lives of several other foster children throughout the years. We bonded over our shared understanding of trauma and the importance of finding support with mental health.

"Trauma is real early. Childhood trauma is real and you can't love that away, you just can't. The older children…when they come into care, the more trauma they've actually seen and experienced. " – Tracy

In this episode, Tracy shares her story from fostering to adoption and her family's navigation through trauma and mental health.

Here's what Tracy shared, be sure not to miss:

• Welcoming Tracy (2:38)
• How does fostering work? (4:43)
• Fostering children with different needs (7:08)
• The journey from fostering to adoption (8:45)
• Grief in the journey (14:56)
• Reaching out through Facebook (17:02)
• Childhood trauma (18:41)
• Judgements from others (21:18)
• Navigating mental health (28:41)
• A glimmer of hope (37:27)
• Advice for new moms (39:57)
• What gives Tracy hope (42:33)
• How to find a community (43:52)

Foster parenthood and adoptive motherhood are emotional journeys as you strive to love your children and help them navigate trauma and change. This journey is challenging and messy at times, but also filled with joy and hope. I hope that Tracy has helped to show that even throughout the challenge, the messy, the scary, there is support, there is hope for the future. Do you have experience with fostering or adoption? Do you have experiences you would like to share with other mothers? Let me know in the When Autumn Comes Society or send me a DM on Instagram! I'd love to hear about how this helped you.

Catch up with Suz:

Instagram

When Autumn Comes:

WAC Instagram

WAC Facebook Page

WAC Society Facebook Page

Thank you so much for joining me on this journey. Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories from other members of our medical and disabled community.

If you enjoyed this episode, please leave us a 5-star rating and a review so we can reach more 4AM Moms with medically complicated, rare, beautiful children.

• Find your squad
• Make it ok to talk about mental health
• Accept the love

We know that it is scary to learn that your child(ren) may need extra pieces of medical equipment to survive. Medical technology should never be positioned to us as a "last resort" when in reality it is often life saving game changers for our kids.

Tia is here, sharing her family's story. I met Tia and Hendrix when Benji and I were in the NICU and then we continued to cross paths frequently when Lorelei and I were in the PICU.

Tia talks about what it was like when they began to discuss a tracheostomy for her son, how it made them feel, the fears they faced and where they are now.

"I think that when we think of medical devices or medical equipment with kids, it's like, 'Dang, what quality of life are they gonna have?' Well, they're gonna have the quality of life that you provide for them!" - Tia

I hope today's episode with Tia helped you see that even in the midst of big life decisions for your children, you have other families who see you and know how you feel. What big decisions have you had to make for your children? How has it made you feel? Let's talk about it in the When Autumn Comes Society or send me a DM on Instagram!

Catch up with Suz:

Instagram

When Autumn Comes:

WAC Instagram

WAC Facebook Page

WAC Society Facebook Page

Links and resources:

WAC is a program of the Apricity Hope Project

Thank you so much for joining me on this journey. Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories from other members of our medical and disabled community.

If you enjoyed this episode, please leave us a 5-star rating and a review so we can reach more 4 am moms with medically complicated, rare, beautiful children.

Hey mama. A NICU hospital stay is like stepping into another world – one where there are a whole lot of questions. What do these medical terms mean? What are these numbers? How do you advocate for yourself and your baby? In the midst of worrying about your child's health and wellbeing, you're wondering about all of this. It's a lot. That's why this episode is for you…

I planned to share my experience and the experiences of others during NICU Awareness Month, but September came and went and content didn't get out (if anyone understands that, it's y'all!). Now we're back and our guest, Meredith, returns for a third time for season three's special episode celebrating NICU awareness.

Meredith has four children, including two with disabilities, one with cerebral palsy, and another with down syndrome. We bonded over things like medical trauma and PTSD, and being two-time NICU moms.

"You've been thrown into a situation where you need to celebrate the fact that your baby's life has been saved. Yet, you're so sad because you didn't get the cute pictures of your baby after they were born, you know? So you have to be able to share that with somebody. And there are other people who get it." – Meredith

In this episode, Meredith discusses what emotions she felt during her second NICU stay and why it was so different from her first one.

Here's what Meredith discussed that you do not want to miss:

• Welcoming Meredith (4:17)
• A quick recap (5:55)
• First NICU stay for a military family (9:48)
• Hospitals in the US vs hospitals abroad (17:59)
• Atypical vs. typical births (27:15)
• Entering a special needs lifestyle in a foreign country (33:10)
• The medical system in the US and abroad (35:05)
• Two-time Nicu moms share their advice (38:58)
• Advice for those who know someone in the NICU (41:53)
• What gives Meredith hope (45:12)

The NICU is an emotional valley where all you want is to hold your baby and go home without monitors or numbers. It's a difficult and painful journey, but it's also one of hope. And I hope today's episode with Meredith helped you see that even in the midst of something like this, you have other NICU moms to support you. What was your experience like or what advice would you give to other NICU moms? Let me know in the When Autumn Comes Society or send me a DM on Instagram! I'd love to hear about how this helped you.

Catch up with Suz:

Instagram

When Autumn Comes:

WAC Instagram

WAC Facebook Page

WAC Society Facebook Page

Links and resources:

Meredith: Part One – God's Puzzle Pieces

Meredith: Part Two – The Feast

WAC is a program of the Apricity Hope Project

Thank you so much for joining me on this journey. Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories from other members of our medical and disabled community.

If you enjoyed this episode, please leave us a 5-star rating and a review so we can reach more 4 am moms with medically complicated, rare, beautiful children.

• Learn how to navigate the NICU
• Discover why community is so important
• Find out what to say – and what not to say – to NICU moms

If you need a good chuckle, you will love today's 4AM with my guest Olivia. We talk about a legit 4AM boob graze, strategies for wearing a bra while in the hospital, and a new nonprofit she is starting one day.

Links and resources:

• Follow Suz: @suzgeoghegan
• Join the conversation: www.facebook.com/WhenAutumnComesSociety
• Follow us on Facebook: www.facebook.com/WhenAutumnComesPodcast
• Follow us on Instagram: @WhenAutumnComesPodcast

Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories of medical and special needs parenting from families like yours.

And, if you enjoyed this episode, please leave us a rating and a review? Thanks!

Meet Olivia and her beautiful family. Her youngest son, Archer, was born with a slew of medical complications and was later diagnosed with not one, but two rare diseases: Kabuki Syndrome and RYR1. This family has had to make some logistical decisions, including career and geographic moves, to make sure their entire family is balancing the best way they can.

Topics discussed that you do not want to miss:

• Two rare genetic syndromes that do not play well together
• The Teeter Totter: spouses handling tough news
• Born at the start of the pandemic… plus career shifts, and postpartum depression
• The language of trauma
• The lady in the grocery store

Links and resources:

• Learn more about Archer and Kabuki Syndrome
• WAC is a program of the Apricity Hope Project: apricityhope.org
• Freebies for you: www.SuzGeoghegan.com/Freebies
• Follow us on Facebook: www.facebook.com/WhenAutumnComesPodcast
• Join the WAC Society to talk about all things pod related: www.facebook.com/WhenAutumnComesSociety
• Follow us on Instagram: @WhenAutumnComesPodcast
• Catch up with Suz: @suzgeoghegan on insta

Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories from other members of our medical and disabled community.

And, if you enjoyed this episode, please leave us a 5 star rating and a review! Thank You!

We are kicking off season three just as everyone is kicking off a brand new school year! With that, our first guest is Beth Liesenfeld from the Parent IEP Lab. She is an incredible resource for parents who are navigating the school system for our medical and special needs kids. Today she breaks down a lot of information but she also invites you to her FREE Parent IEP Advocacy Summit with over 15 speakers and a TON of information. Link below to sign up for the summit!

Topics discussed that you do not want to miss:

• What is an IEP and how does the process work?
• IFSP vs IEP
• What goes into an IEP
• Priorities - including safety, communication and behaviors
• It's an emotional but legal process.
• Vision statements and learning standards
• What to do when things are not going well

Links and resources:

• Parent IEP Advocacy Summit: https://courses.theieplab.com/a/2147518470/d83e8M6W
• The Parent IEP Lab Podcast: https://pod.link/1584271582
• WAC is a program of the Apricity Hope Project: apricityhope.org
• Follow us on Facebook: www.facebook.com/WhenAutumnComesPodcast
• Join the WAC Society to talk about all things pod related: www.facebook.com/WhenAutumnComesSociety
• Follow us on Instagram: @WhenAutumnComesPodcast
• Catch up with Suz: @suzgeoghegan on insta

Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories from other members of our medical and disabled community.

And, if you enjoyed this episode, please leave us a 5 star rating and a review! Thank You!

Thank you all so much for your patience as Suz navigated life without a computer for weeks and weeks. We are BACK and we are thrilled to be here for our third season! We have amazing, exciting, semi-terrifiying (if you're Suz) BIG NEWS to share in this preview episode so give it a listen. Lastly we are sharing details about the upcoming (free) Parent IEP Advocacy Summit that is happening this week where Suz will be one of 15+ speakers!

Links and resources:

• Parent IEP Advocacy Summit: https://courses.theieplab.com/a/2147518470/d83e8M6W
• WAC is a program of the Apricity Hope Project: apricityhope.org
• Follow us on Facebook: www.facebook.com/WhenAutumnComesPodcast
• Join the WAC Society to talk about all things pod related: www.facebook.com/WhenAutumnComesSociety
• Follow us on Instagram: @WhenAutumnComesPodcast
• Catch up with Suz: @suzgeoghegan on insta

Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories from other members of our medical and disabled community.

And, if you enjoyed this episode, please leave us a 5 star rating and a review! Thank You!

We know that traveling can be overstimulating for neurotypical individuals, but how does it affect our children who are already sensory sensitive? Amy, from Floyo Travel, is talking with Suz today about tips for traveling with the right mindset for special needs families who may struggle with sensory processing disorders.

Topics discussed that you do not want to miss:

• The importance of practicing before your trip
• Sensory travel tips, including locating the "safe + quiet spot" when you arrive
• Sensory support: TSA Cares
• Expectations in the moment

Links and resources:

• Mentioned in this episode: Grief in Progress Shirt
• Connect with Amy: www.floyotravel.com
• Do you love WAC? We are independently produced and would appreciate your support. Join the HOPE FULL Community on patreon and help us keep the lights on while connecting with more families!! www.patreon.com/suzgeoghegan
• Freebies for you: www.SuzGeoghegan.com/Freebies
• Follow us on Facebook: www.facebook.com/WhenAutumnComesPodcast
• Join the WAC Society to talk about all things pod related: www.facebook.com/WhenAutumnComesSociety
• Follow us on Instagram: @WhenAutumnComesPodcast
• Catch up with Suz: @suzgeoghegan on insta

Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories from other members of our medical and disabled community.

And, if you enjoyed this episode, please leave us a 5 star rating and a review! Thank You!

Amy from Floyo Travel is opening up and sharing all of her tips and tricks when it comes to communication while on vacation. We talk about communication for our nonverbal children, but also communication roles as parents and caregivers.

Topics discussed that you do not want to miss:

• What does it look like to work with a travel agent?
• Communication devices and options while traveling
• Medical travel card and why you should have one
• Communicating your family's needs

Links and resources:

• Connect with Amy: www.floyotravel.com
• Do you love WAC? We are independently produced and would appreciate your support. Join the HOPE FULL Community on patreon and help us keep the lights on while connecting with more families!! www.patreon.com/suzgeoghegan
• Freebies for you: www.SuzGeoghegan.com/Freebies
• Follow us on Facebook: www.facebook.com/WhenAutumnComesPodcast
• Join the WAC Society to talk about all things pod related: www.facebook.com/WhenAutumnComesSociety
• Follow us on Instagram: @WhenAutumnComesPodcast
• Catch up with Suz: @suzgeoghegan on insta

Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories from other members of our medical and disabled community.

And, if you enjoyed this episode, please leave us a 5 star rating and a review! Thank You!