The parenting experience with a child with medical complexities can feel worlds away from those around us. There are so many aspects that no one knows or sees. In this episode, Anna Brown comes back to share three of her infamous “Confessions of a special-needs mama” that she has a reputation for on Instagram.

We unpack three of her—and her followers’—favorites:

1. I am not stronger than you.

2. What happens when it stops being cute?

3. I wish your pity were replaced with empathy.

Links:

Answer this month’s question: https://therarelifepodcast.com/

Follow Anna on IG: https://www.instagram.com/mothering_rare/

Follow me on IG: https://www.instagram.com/the_rare_life/

Four-year-old Emery has a slew of diagnoses under the umbrella diagnosis of Rubinstein-Taybi syndrome; Almost every one of her systems are impacted and require specialists and therapies. When she was born, Anna and her husband Justen were put under enormous strain—none of their family or friends could give them any guidance or insight into how to parent a medically-complex child. They were faced with countless appointments, tube feedings, and perplexing medical issues, all while being extremely sleep-deprived—Emery frequently wakes up at night due to pain.

In this episode, Anna and I chat about the shift that occurred in her social circles after Emery’s arrival. She shares how she and Justen quickly became aware of their flaws and had to address them to withstand the constant stress. Anna also opens up about how the ways that Emery has made her a better person overall.

Links:

Our Sponsor, BetterHelp Counseling: https://www.betterhelp.com/therarelife

Anna on Instagram: https://www.instagram.com/mothering_rare/

Madeline on Instagram: https://www.instagram.com/the_rare_life/

Finding out Kimball was hard of hearing was one of the hardest diagnoses to receive. It was totally unexpected, and we grieved the lifelong implications of it.

In this episode, I share our journey with Kimball and his hearing loss, the controversial world we were thrown into, and the importance of following your child’s lead in determining what language(s) to give them.

I also open up about the traumatizing and heartbreaking interactions with other parents of children with deafness because of our decision to give our son Listening Spoken Language instead of American Sign Language and talk about the need for more inclusion in the deaf community.

It is time we pull together and support each other in our journeys, regardless of our differing opinions and choices on behalf of our child and family.

This is a fantastic episode for all within this community, as well as the curious wanting a peek inside this unseen world.

Links:

Donate via Patreon: https://www.patreon.com/therarelifepodcast

Ep. 5: A List of Diagnoses: https://therarelifepodcast.com/show-notes/ep-5-list-diagnoses-solo-episode

Ep. 12: Language Development w/ Angie: https://therarelifepodcast.com/show-notes/ep-12-3-fun-ways-facilitate-language-development-w-hearing-specialist-angie

Flintstones video: https://www.youtube.com/watch?v=Va1wrnsMve0

Join the Inclusive Parents of Deaf and Hard of Hearing FB group: https://www.facebook.com/groups/226590729019924

My story on All About Audiology podcast: https://allaboutaudiology.com/all-about-deaf-plus-and-rare-disorders-episode-41-with-madeline-cheney/

Emotional safety is the security that I can share what is in my heart with my partner. Every relationship needs that, but perhaps none more than in the relationship of special needs parents. So much is asked of us, and there is often grief to work through. Being able to feel safe in sharing the deepest, darkest places of our hearts is critical.

In our conversation, Dr. Matt Townsend teaches us about emotional safety, and how to improve it if your partner is prone to shutting down and detaching when emotions are high. He explains the why of detachment and how we can respectfully help our spouse feel emotionally safe with us, and in return give us the emotional safety we long for.

This episode is full of advice for nurturing our relationships and mastering the art of communication.

Links:

Purchase his book here: https://amzn.to/3mcYjNY

Find Matt Townsend here: https://matttownsend.com/

Follow him on Instagram here: https://www.instagram.com/drmatttownsend/

Find him on FB here: https://www.facebook.com/mattmtownsend

When it comes to kids with disabilities, friendships can be a bit more complicated thing to navigate than with the average child. Effie is back from her story episode to talk about the ins and outs of her son Ford’s relationship with the world. She shares some truly heartwarming stories of inclusion and the surprising effects of putting LED lights on the wheels of his wheelchair.

We also dive into the dynamics of our relationships with friends and family that shift when we add our medically-complex children to the picture. She shares advice on how to keep closeness with them and the importance of finding your people that can really understand your life (ahem, us!).

This conversation was a fun one and I hope you enjoy it as much as we did!

Links:

Follow Effie and Once Upon a Gene podcast on Instagram: https://www.instagram.com/onceuponagene.podcast/

Follow me and The Rare Life on Instagram: https://www.instagram.com/the_rare_life/

Ep. 39: Inclusive Children’s Books INSERT LINK

Gary Gigantic Dream by Dr. Nicole Julia: https://amzn.to/35qAXyR

When Charley Met Emma by Amy Webb: https://amzn.to/2Lz8z6n

Friendship Circle: https://www.friendshipcircle.org/get-involved/families/

LED lights for wheels on wheelchair: https://amzn.to/35jzvOq

Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed.

In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat about the huge perspective-shift that comes along with a child with medical complexities—the little things are everything. Effie also talks about the precious relationship Ford shares with his younger sister Ezzy, as well as the bittersweet moments of watching Ezzy develop typically.

Effie Parks is the amazing host of the podcast Once Upon a Gene. You can find a link to her podcast in the show notes!

Links

Answer the Q of the Month and see photos of Effie + fam: https://therarelifepodcast.com/

Effie’s podcast Once Upon a Gene: https://effieparks.com/podcast

Follow Effie on Instagram: https://www.instagram.com/onceuponagene.podcast/

Follow me on Instagram: https://www.instagram.com/the_rare_life/

It felt like Wendy and I were drowning right beside each other in the same stormy water, and I couldn’t save her. Wendy has struggled right along with me since Kimball’s arrival in our family, and it’s something that has improved with time.

In this episode, I share all about that as well as what Wendy has taught me along the way. I also tell stories of Wendy’s hysterical schemes with Kimball including her infamous “bro time” and the boarding school she hopes to create for “buddy boys like Kimball” when she grows up.

Links:

Child Life on Call podcast: https://www.childlifepodcast.com/

Child life on IG: https://www.instagram.com/childlifeoncall/

Inclusion: What does it mean to you? If you’re in the same parenting corner I am, it probably means a whole lot. What would we give to create a more inclusive and loving world for our children?

There are many ways of doing that, and one of the most effective ways is in children’s literature. So many foundations for our lives were laid as little children peering at books read to us by our parents.

In this episode, authors Macy Gilson, Jessica Parham, and Megan DeJarnett share their inspiration behind their inclusive children’s books. We talk about the importance of inclusion and love, and how we can bring these conversations outside of our hidden world of disability and special needs as we gift others in our communities these books and others like them.

Links:

Inclusive Books | The Rare Life (therarelifepodcast.com)

Madeline Cheney (host) IG: https://www.instagram.com/the_rare_life/

Good to be Me (10% off this weekend):

No Such Thing as Normal (10% off this weekend with code therarelife10):

Kindness is Golden:

The Able Fables by Nicole Julia:

Social media can benefit many kinds of people, but perhaps none so much as special needs parents. So many of us have feelings of isolation from friends and family as we are thrown into a world they don’t understand. Enter other parents who get it.

Social media can connect us with other parents navigating similar medical and other needs. We can feel seen and heard and get ideas on how to make our lives easier.

In this episode, Jess Wolff shares her unique perspective on Instagram, with over 40k followers and a tight-knit community of parents that have made the two years with her daughter Lily so much more doable. In it we wonder together how special needs parents did it all in a world before social media existed.

Links:

Follow Jess on Instagram @LilysLittleLungs here: https://www.instagram.com/lilyslittlelungs/

Follow me on Instagram @the_rare_life here: https://www.instagram.com/the_rare_life/

Join the FB group Parents of Children with Rare Medical Conditions here: https://www.facebook.com/groups/parentsofrare

Jenny’s episodes: https://therarelifepodcast.com/show-notes/ep-23-story-jamesand https://therarelifepodcast.com/show-notes/ep-24-disability-advocacy-state-level-w-jenny-mclelland

Not every twin has a living sibling—and Lily is an example of this tragic phenomenon. Her sister known as Autumn passed away at 24-weeks gestation, and she was born a few days later. In this episode, mom Jess shares the pain of losing a child and of the struggles that Lily has had because of her premature birth.

Lily has a tracheostomy, is G-tube fed, and has damaged lungs due to her intubation during her 256-day NICU stay as she fought for her life. Lily almost died several times during her stay, but one time in particular has really stuck with her.

Jess also opens up about the guilt she holds because of the clotting disorders which ultimately led to A’s death and Lily’s prematurity.

Links:

Follow Jess here: https://www.instagram.com/lilyslittlelungs/

Follow me here: https://www.instagram.com/the_rare_life/

Answer this month’s question here: https://therarelifepodcast.com/

Still Apart of Us, a Podcast about Stillbirth and Infant Loss: https://stillapartofus.com/