The What Am I Thankful For Podcast

Joe and Dez get real about a season that's felt a little off — and commit to showing up as their true, unfiltered selves from here on out. Then they dive into the biggest news of the season: pulling Maddux from his home school district after a budget cut stripped his one-to-one support, and the decision to homeschool for 6th grade. Along the way, they cover firing (and finding) the right pediatrician, walking away from a medical therapy program that stopped serving Maddux well, and the exhausting-but-necessary reality of appealing denials.

If you're a special needs parent stuck in a system that isn't listening, this one's for you: you have options, and you don't have to settle.

In this episode:

• Why Joe and Dez are dropping the "performing for the camera" energy and just talking straight, F-bombs and all
• The full story behind pulling Maddux from his school district after 5 good years fell apart in a matter of months
• What actually happens behind the scenes when a district makes budget cuts that affect a medically complex kid
• Why documentation and "recap it in writing" is the special needs parenting survival skill nobody tells you about
• Firing a pediatrician's office — and finding a new one within a week that actually got it right
• Walking away from Maddux's medical therapy unit in search of better care
• The regional center appeal that got overturned in the courtroom before the judge even had to rule
• A practical breakdown of how the appeals process actually works — mediation vs. going in front of a judge, and why they usually skip straight to the latter
• Why "the denial is when the fight has begun," not the end of the road
• Where to actually find support and resources (hint: it's rarely the people who are paid to provide it)

What Am I Thankful For (WAITF) — a podcast about special needs parenting, advocacy, and finding your people.

Joe and Dez recap how Maddux found his way to Angel City Sports and the Junior Adaptive Camp in San Diego — from wheelchair basketball to archery to making friends IRL. They also share an update on Maddux's medical journey, including his major spinal fusion at CHLA and his recovery since.

Timestamps:

00:00 Camp Application Shock00:33 Podcast Welcome Back00:52 Discovering Angel City02:13 First Games Nerves03:06 Wheelchair Basketball Breakthrough03:36 Angels on Earth05:07 A Place Without Apologies05:51 Caregiver Question Matters06:28 Day Camp Logistics07:41 Independence and Confidence Boost09:02 Medical Team Support10:25 New Sports Every Day11:14 Free Camp and Community11:55 Meeting Friends IRL12:44 Trip Planning and Packing14:55 Packing Nonnegotiables15:56 Wheelchair Forgotten Story16:38 Rolling Medical Tote Hack18:00 Tetris Packing The SUV19:11 Four Year Medical Pause20:15 Kyphosis Curve Watch23:24 Spinal Fusion Reality25:52 Recovery Milestones27:57 Gratitude And Wrap Up

We're back. After a four-year break, Joe and Desirée return to share why they stepped away, what's changed, and where things stand now with their son Maddux — an 11-year-old born with spina bifida and achondroplasia.

In this episode: The real reason behind the podcasting break, Desirée putting her career on hold to become Maddux's full-time advocate and caregiver, the elementary school incident that changed everything, a current struggle with their school district over budget cuts affecting Maddux's LVN paraprofessional, and the community of families that keeps them going.

If you're a parent navigating a diagnosis, caregiving, advocacy, or just need to know you're not alone — this one's for you.

Timestamps:
00:00 – We're back: reintroducing the show02:07 – Why they started WAITF05:10 – Setting the table: what to know about their family07:01 – Explaining the break in podcasting07:33 – Desirée putting her career on hold17:57 – The elementary school fundraiser and standing up to discrimination20:12 – What's next: storytelling episodes vs. real-time updates24:39 – Running back Maddux's elementary school journey27:38 – The incident: the stairs, the hospital, the aftermath30:05 – Finding Nicole: their one-to-one LVN44:39 – 2026 budget cuts and losing Nicole's position54:15 – Press coverage and public reaction1:04:39 – What they're thankful for

As we continue to tell our story of Fetal Surgery at UCSF we get into post-surgical and recovery topics such as:

-The 1st ultrasound after fetal surgery

-How to help your loved ones in the hospital

-Life on bedrest

-A surprise request to sign a DNR order at the worst possible time

-A THANK YOU to nurses

-The outpouring of support for Maddux (including his namesake)

-My baby is no longer moving/kicking

-Our car gets towed in SF, insult to injury

-The Fetal Surgery PLAYBOOK

In Episode 5, we discuss the amazing experience that is Fetal Surgery to repair Spina Bifida (Myelomeningocele).  This process includes a surgical repair to a fetus at roughly the half-way point of a pregnancy.  The baby is operated on in-utero and then placed back into the uterus to continue the pregnancy for as long as possible until a "second-birth" is needed.  This procedure comes with some major benefits but also several risks to an otherwise healthy mother and her baby.  We share the entire experience leading up the the day of surgery in this episode.

Subtopics include:

-The MOMS trial: https://www.chop.edu/centers-programs/center-fetal-diagnosis-and-treatment/management-myelomeningocele-study 

-A breakdown of some of the positive outcomes of Fetal repair 

-Avoiding the s-word (Shunt)  

-What we were hoping to gain from Fetal Surgery 

-We began to educate our family and friends around the diagnosis, the plan for fetal surgery and potential outcomes 

-Traveling to UCSF: https://fetus.ucsf.edu/spina-bifida/ 

-Navigating career challenges and paid leave 

-Subtle coincidences 

-A fearless mother on the day of surgery

Thank you for listening!

www.thankfulforpod.com

In Episode 4, we continue to unpack the moments and reactions to receiving Maddux's diagnosis of Spina Bifida.  In this episode, we take a deeper dive into how we dealt with our feelings and depression.  How we each managed to pick ourselves up from depression and mourning and see the light that would lead to an important decision.  How would we proceed with this pregnancy?

Other subtopics:

-We believe that families should have the right to choose how they proceed post-diagnosis 

-The 2nd opinion that set us back on track 

-Bedside manner and connection is so important 

-The best advice we have ever received 

-RESEARCH - RESEARCH - RESEARCH 

-What Do You Do Dear? Blog

-#spinabifida #spinabeautiful

-What do families affected by Spina Bifida look like?

-What would happen to our family?

-Meeting with the Jenkins

-Are we really doing this Fetal Surgery thing??

www.thankfulforpod.com

Topics:

Creating the Podcast

Special Needs Parenting Means______?

Listener engagement from Social Media

Update on Maddux’s Return to School

Our son is growing up right before our eyes

Do we drink too much??  (Spoiler: Probably)

@whatamithankfulfor_ on Instagram

www.ThankfulforPod.com

In Episode 3, we discuss the events surrounding Maddux's diagnosis of Spina Bifida.  This diagnosis happened in the first trimester of the pregnancy and forced us to deal with the so many emotions.  Any parent that has faced the diagnosis of a disability or abnormality can relate to our account of the story.

Other subtopics include:   

-Infertility struggles recap  

-Nutrition Response Testing (For Fertility)

-What causes Spina Bifida?     

-Folic Acid/Folate Supplements   

-Don't blame yourself (even though you will!)   

-Genetic Testing   

-Diagnosis Day   

-When doctors recommend abortion   

-The different phases of diagnosis grief

• Shock  
• Denial  
• Anger  
• Depression  

-Get off the mat and do your research!     

-2nd Opinion  

-Decision timetables

-Fetal Surgery https://fetus.ucsf.edu/spina-bifida/   

www.thankfulforpod.com