For many parents, the NICU is an initiation into the medically complex world. Medical terminology is thrown around with assumed understanding, and tubes and cords protrude their precious infant.

Beyond that, the emotional rollercoaster endured pushes many parents past their limits—and yet here we are.

In this solo episode, I share a bit about what Kimball’s NICU experience was for us, with memories that are relatable for my fellow parents of NICU babes, and eye-opening for the less experienced.

Links:

Donate to Ronald McDonald House Charities here: https://secure2.convio.net/rmhci/site/SPageNavigator/pw/Donation_Landing.html

Listen to the Preface Episode here:

https://therarelifepodcast.com/show-notes/preface

Ep. 13: Feeding Tube Adventures:

https://therarelifepodcast.com/show-notes/ep-13-feeding-tube-adventures

Ep. 5: A List of Diagnoses:

https://therarelifepodcast.com/show-notes/ep-5-list-diagnoses-solo-episode

What comes to mind when you hear the word “trauma”? For many parents of children with complex medical needs, it’s a very real part of our lives.

In this episode, guest Rosey Shaefermeyer answers the questions:

1. What is trauma?

2. What are some red flags that we might need professional help working through our trauma?

3. What is EMDR therapy and how does it work?

4. What can we do if we don’t have the time or money for traditional therapy?

BetterHelp affiliate link: https://www.betterhelp.com/therarelife

Find a professional offering EMDR in your area here: https://www.emdria.org/find-a-therapist/

Video about EMDR: https://www.emdria.org/about-emdr-therapy/

The Body Keeps the Score: https://amzn.to/30HdczY

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

This episode is an invitation to all of us to join the army of parents like Jenny in improving policies that directly affect our loved ones and others with disabilities.

While you’re listening, maybe an issue you’ve run into will pop into your head that you want to tackle, or maybe you can tuck this episode in your back pocket in case you run into issues that matter to you in the future.

In this episode, Jenny shares her victory in making in-home nursing more accessible to trach and ventilator-dependent California residents by lobbying at the state level.

She also teaches us how we can get our hands wet in state-level advocacy, beginning with issues that matter to us personally.

These are civil rights issues. People with disabilities matter.

As a former police officer, Jenny was prepared for the extreme stress of living 200 miles away from her baby in the hospital for nine-months as he fought for his life threatened by severe birth defects as a result of his extremely rare genetic syndrome (one that her 9-year-old and my 2-year-old son share).

In this episode, she hilariously recounts describes her memo-writing for each medical appointment, her bottling up of emotions to hold it together, and how refreshingly normalcy of arguments you can expect between any 9-year old boy and his mom.

For comments, pictures, and more check out the my website, https://therarelifepodcast.com.

Finding out I’m a genetic carrier for my son’s syndrome of CDPX1 was a very tough pill to swallow; and it has a whole slew of implications for my life.

It means I caused all of my son’s hugely challenging and life-threatening birth defects. And it also means that each of our children have a 50/50 chance of inheriting the unlucky genes.

Listen to find out what it was like to receive this life-changing news and what we’ve decided to do about it.

Joining in a cause to uplift and help others in their struggles can be very healing as Tara Docekal, founder of the non-profit organization Mightiest Mamas, knows well.

In this episode, Tara inspires us to look beyond our own challenges and trauma to serve others. She shares how a one-time NICU and antepartum care Christmas gifting event turned into the beginning of her cherished Mightiest Mamas organization.

She gives super practical advice for those wanting to give back in similar ways.

Tara also explains how meaningful it has been to see the impact of their acts of kindness.

Answer question of the month: therarelifepodcast.com

To donate: [email protected]

Donate items from Amazon list here.

More about Mightiest Mamas: http://www.mightiestmamas.org/

Mightiest Mamas FB Page: https://www.facebook.com/mightiestmamas/

Grieving the loss of a loved one before they’re gone has a name: anticipatory grief. In Katie’s special topic episode, she shares all about her experience living with the pain that she and her family will outlive their precious daughter Claire.

Although her grief was all-encompassing in the early days after receiving her daughter’s prognosis, Katie has learned to carry her grief and even thrive.

In her witty no-nonsense fashion, she shares advice for others who also experience anticipatory grief as well as advice on how to best support friends and family experiencing anticipatory grief.

Although Claire’s medical condition has many characteristics, for Katie and her husband they all pale in comparison to the heart-shattering fact that it is terminal.

In this episode, we laugh and we cry as mom Katie shares all about her adrenaline-junky four-year-old daughter Claire, her pregnancy and birth story, and the gut-wrenching moments of learning that their precious newborn would not survive childhood.

She also shares ways that she has become a stronger, more gratitude-filled and empathetic person because of Claire and the lethal nature of her diagnosis.

Trigger warning concerning childhood death.

Season 2 is finally here! I’ve been really looking forward to Season 2 because I have some amazing guests to share and the theme is dynamite. We will be focusing on our personal journey and evolution as parents!

In this kickoff episode, I share summaries and audio clips of the first four episodes in Season 2 so you can really whet your appetite for the good stuff coming!

Listen to the Preface episode here: https://therarelifepodcast.com/show-notes/preface

Visit my website for the full transcript and comments! https://therarelifepodcast.com/

TRANSCRIPT:

Madeline Cheney  0:00  

Well that’s a wrap! Reminisce about the amazing episodes from Season 1. We’ll listen to the season in the form of short audio clips, and I’ll share feedback about a few episodes from Season 1 from unexpected (but amazing!) audience members.

Thank you for an epic first season! We’ll be back October 15thwith Season 2’s kickoff episode!

Link to my episode in All About Audiology: https://allaboutaudiology.com/all-about-deaf-plus-and-rare-disorders-episode-41-with-madeline-cheney/

Facebook Page for The Rare Life: https://www.facebook.com/The-Rare-Life-Podcast-100145211681157/?view_public_for=100145211681157

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