The Rare Life

When Ghillie was born at 25 weeks, Anna and her husband thought their biggest hurdle would be his micro preemie size and lungs. It wasn’t until after he was examined in the NICU that they learned about his in-utero brain injury which has life-long affects. In this episode, Anna shares Gilbert’s birth and agonizing NICU stay during which it was suggested they remove him from life-support, hugely tr...

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 memorie...

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 hav...

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 e...

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 appoin...

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-chang...

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 o...

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. I...

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 surv...

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 t...

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://allaboutaudio...

From food play to food chaining, there are many practical strategies in this episode, as explained by speech language pathologist Kimberly Hirte. She is dedicated to helping what she calls “selective eaters” eat an increased quantity and variety of foods while fostering a fun and secure mealtime experience. LINKS: Vegetable cutters: https://amzn.to/2C3c2Wl Adjustable Highchair (Tripp Trap): https:...

Ever feel totally overwhelmed communicating with a non-verbal child? Parents Candace and Shawn have been there. In this special topic episode, they share things they’ve learned along their 8-year journey with their son Miller. This episode has lessons to be learned from for parents of every kind, but especially those that long to improve their communication with children for whom spoken language j...

Miller is “joy personified”, very social, and loving. But that isn’t to say there aren’t major challenges that come along with having a child with Angelman Syndrome. Their number one challenge is Miller’s non-verbalism. He also sleeps 2-3 hours per 24-hour period and can even go days without sleep, largely because of his hyperactivity, and he also is prone to having seizures. In this conversation,...

“Tubie”: Do you know what it means? Before Kimball came along, I hadn’t a clue what the term meant (a word among many I learned courtesy of my medically complex parent status). Whether you know that term because you have a child known as a “tubie” or “tubie-graduate”, or you are only now catching on to what it means because of contextual clues, this episode is meant for you. In this solo episode,...

Learn why these three everyday activities help children develop language and discover fun tips to tweak them in order to enrich your child’s access to language even more. Hearing specialist Angie works as an in-home therapist for the Utah School for the Deaf with the mission to give children with hearing loss access to language. Turns out the three most powerful tools are ones that apply...

Do you totally love your child’s intervention tribe? Or do you see room for improvement in that department? Kari is an exceptional example of opening her heart and home to her tribe and is so inspiring. In this episode, she shares all about her deep love and appreciation for professionals that have come together for the good of her daughter. She also shares a few strategies she’s used to keep up w...

Mom Kari gives us a glimpse into the world of her daughter Sloan who is profoundly deaf-blind and is tough as nails. Sloan has a clinical diagnosis of CHARGE syndrome, a rare disorder affecting various parts of the body. In this episode, Kari shares what life is like with the dual sensory loss, her birth story, and how her dreams for her daughter have shifted in meaningful ways. Kari and Sloan’s G...

Take your rightful place at the head of your child’s care team and watch everyone benefit from it. Initially, parents often must surrender a lot of their control to experts when their child has extra needs. In this solo episode, I share my own evolution in owning my leadership role in my son’s intervention. I also detail strategies I’ve found helpful and revolutionary in really growing into the ro...

FIG is an acronym to guide advocacy for your child. They are the three considerations you should take when advocating for your child, according to audiologist Dr. Lilach Saperstein. FIG stands for: F: familiarity I: intention G: goal For the full transcript, comments, images, and more visit the website: https://therarelifepodcast.com/show-notes/ep-8-advocating-using-fig-method-dr-saperstein My jou...

Emily’s mission is to help the others see past her daughter Nora’s differences and treat her like anyone else; and she has had plenty of experience doing so. In this episode, she shares things she’s learned from it, like when to speak up and when to drop it and how to set the example for siblings and eventually Nora to be able to speak up on her behalf. For a full transcript, images, comments, and...

Nora is unstoppable. Her determined and ambitious spirit is housed in a body affected by the most common form of dwarfism, achondroplasia. Her mother Emily shares all about the obstacles that Nora has overcome in her two years of life, and her confidence that she will continue to overcome throughout her life. In this episode, we also talk about the lack of knowledge about rare diagnoses and the po...

Any diagnosis received for your child can be completely overwhelming and heartbreaking. In this solo episode, Madeline shares her experience learning about each birth defect her son has because of his rare genetic syndrome. She also talks about the minimizing effects of spouting off lists of diagnoses, the crippling weight each new diagnosis brought, as well as the triumph and personal evolution s...

Do you ever feel like you’re just not enough? As special needs parents, I’m pretty sure we all have at some point. This episode is a pep-talk of sorts woven in with practical advice from guest Lisa Rawley, a developmental specialist with 20 years of experience. We discuss when increasing or reducing therapies makes sense, the power of creating a strategy before the misbehavior arises, and the impo...

Quality of life can be a complex issue, but also really, very simple: Is your child happy? Do they experience joy? Are they loved? Alyssa affirms that these questions are key in determining our children’s quality of life, and that their abilities have nothing to do with it. We also talk about how medical decision-making on behalf of our children comes into play. She shares some great advice on wei...