054: The Entrepreneurial Spirit of a Special Needs Parent with Cari Desiderio
Release Date: 02/07/2023
082: Bringing Peace & Joy to Families with Pediatric Cancer with Jenna Kmitch
Joy In The Journey
Caring for a newly diagnosed child going through a medical journey can be scary and overwhelming. Especially when finding resources meant to support you, like Child Life Specialists, requires extensive research and planning. This is why I am so grateful to our guest today, Jenna Kmitch, for courageously sharing what her process looks like beside her daughter Sydney, who was diagnosed with neuroblastoma just a few weeks after birth. Jenna is the founder of Love Smiles, an organization dedicated to bringing moments of peace and joy to families with pediatric cancer through...
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081: Insights on Communicating Effectively With Your Medical Team with Henry Rosh & Megan Keeler
Joy In The Journey
When you first enter the medical world as a caregiver, everyone around you hits the ground running. The nurses and doctors know exactly how to get started, and yet, you might be left feeling overwhelmed and powerless. This is what makes social workers so important: they support the family holistically, encourage communication, help bridge information gaps, and empower you to become an important member of your child’s medical team. My guests today, Henry Rosh and Megan Keeler, are both social workers at Lurie Children's Hospital of Chicago. Henry works with families who have extended...
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080: Discovering Unexpected Gifts in Times of Grief with Sara Ward
Joy In The Journey
After losing someone close to us we are usually told about the five stages of grief and how each of them will show up. But grief often shows up differently for everyone, skipping and cycling through stages in unique ways. My guest today is Sara Ward, and she knows a thing or two about grieving. After unexpectedly losing her father to a heart problem as a teenager, her 9-month-old adopted son was diagnosed with a rare and terminal disease and given a very short time to live. Instead of choosing to focus only on the hardships of grief, Sara committed to looking for unexpected gifts in her...
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079: The Glimpses of Joy You’ll Find When You Look For Them with Gina Prosch
Joy In The Journey
We’ve all experienced those days where it feels like we catch every red light on a busy commute and nothing seems to be going right. But what happens when we’re intentional about stopping to look for the small glimmers of joy, even in those heavier days? Allow me to introduce you to today’s guest to answer that question. Gina Prosch is a writer and teacher who has made it her mission to help children and adults find joy in even the most difficult days. Her childrens books are perfect for little ones who may be experiencing a harder season of life, and provide parents with inspiring ways...
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078: Offering Hope, Dignity and Holistic Care in Kenyan Hospice with Juli Boit
Joy In The Journey
Juli Boit is no stranger to helping those in need. She’s an author, family nurse practitioner, and international non-profit director of , dedicated to providing palliative care services to adults and children in western Kenya. After going through an adoption journey with her son Ryan, whose parents had recently passed, and consequently adopting his siblings, she found herself needing some help of her own when two of her kids required transplants far from their Kenyan home. These transformative experiences made Juli see her work through a different lens: that joy can be found in...
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077: Trauma & Anxiety: Going From “Why Me?” to “What Now?” with Sarah Falk
Joy In The Journey
Sarah Falk has received more than a few extremely scary cancer diagnoses in her life: the first one at only 17 years old (bone cancer) and the second at 40 years old (breast cancer). Naturally, she found herself asking, “Why Me”? But as you’ll hear, a better question to ask yourself is, “What now?” Sarah is a mom to 4 boys, a mental health therapist, an author, and 4-time cancer survivor. She has taken her traumatic experiences and used them as a source of deep understanding of the challenges these diagnoses come with. Having specialized in anxiety, panic, and trauma, her work is...
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076: Blooming Littles: Helping Parents and Caregivers Manage NICU Journeys with Katie Ross
Joy In The Journey
As today’s guest will tell you, “You become a NICU parent in the blink of an eye.” Katie Ross is the creator of and she’s doing incredible work in the NICU space as a certified neonatal occupational therapist. As a mom of a full-term NICU baby herself, she’s made it her mission to inform and empower parents by teaching them about the little things they can do that make a difference in their baby’s development and truly transform their NICU experience. By combining her doctorate with additional certifications, including neonatal massage and lactation support, her...
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075: Exploring Growth Through Grief and Choosing Faith Everyday with Emily Ann Adams
Joy In The Journey
How are parents meant to believe that the loss of a child is all part of God’s plan? Grief is a difficult journey for everyone, but it can feel especially challenging when it’s accompanied by a feeling of losing yourself or your faith. My guest today, Emily Ann Adams, had this exact experience after the passing of one of her twin boys, Aidan. Faced with three little children under 5 to look after, including Aidan’s brother Alan who was born at 32 weeks, Emily made a courageous decision; to dive deep into her grief to understand it better. In the process, she helped dozens of other...
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074: Finding Community and Letting Love In on a NICU Journey with Meg Helgeson
Joy In The Journey
One of the only certainties about having children is uncertainty: we can’t find out beforehand how a pregnancy or birth experience will go, or who our children will grow up and become. Add in a premature birth, an illness diagnosis, and a NICU stay to the mix, and it can lead to overwhelming worry and anxiety. My guest today, Meg Helgeson, is certainly no stranger to this. Her twin girls Ellie and Leah, who are now healthy 12-year-old girls, had to be flown to the NICU at Comer’s Children Hospital at only 5 days old to receive a meningitis diagnosis. Looking back, Meg is now able to share...
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073: Learning To Flex Your “Joy Muscle” with Bekah Bowman
Joy In The Journey
When a parent learns that their child has been diagnosed with a serious illness or condition, it’s difficult not to be consumed with worst case scenarios. But as Bekah Bowman will tell you, you have two choices: either allow your past and future to steal joy from your present, or embrace joy in the present moment, no matter what it looks like. And Bekah is no stranger to this concept: her two boys, Titus and Ely, were both affected by a rare genetic disease (CLN2) that leads to the quick loss of skills and eventual passing in childhood. After her oldest son passed away...
info_outlineAdvocating for our children is one of the most important parenting tasks there is; but it is one that becomes many times more challenging when it comes to children with special needs or going through difficult medical journeys. And when your child is diagnosed with a disease so rare that only a few other children in the entire world have been diagnosed with it, the process becomes much more challenging.
I’m so happy to have Cari Desiderio on the show to share her best tips on advocating for children with special needs, as she is no stranger to the rare disease world. Her little angel Hannah is a miracle baby who at 1.5 years old was diagnosed with CDK13: a very rare genetic condition characterized by congenital heart defects, intellectual disability and characteristic facial features.
With very little research available on this condition, Cari and her family were faced with the reality of navigating through the unknown. Traditionally, doctors and their teams take charge in caring for our children. But in their case, Cari had to take many matters into her own hands.
Today, she’s sharing with us how she helped shape Hannah’s care, education, and overall well being. You’ll hear how she found the strength and courage to speak up, how she connected with families with common stories for support, how she found time for self-care, and much more.
I just loved how Cari describes parenting a child with special needs as an almost entrepreneurial role: you have to be fierce, network, connect, ask for help, and be resourceful. She reminds us to care for ourselves during the process to avoid burnout and celebrate every little milestone to add some joy to a challenging journey.
Key Takeaways with Cari Desiderio
- The best ways to advocate for your child’s (medical) needs.
- How to find support in families with common stories and how to reach out.
- Finding the courage and strength to navigate the unknown.
- Having an entrepreneurial spirit with your child’s care.
- The importance of self care: maintaining your own health and avoiding burnout.
- Adapting to your new reality, and dealing with the grief of “what could have been”.
- Creating moments of joy by celebrating the little milestones and accomplishments.
Show Notes:
Get Full Access to the Show Notes by visiting: MatteasJoy.org/54.
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