In Part 2 of our Medicaid waiver hearing recap, we read more direct quotes from the hearing transcript, including the moments that still do not make sense to us.

This episode picks up where our last one left off. After losing in court, we are going through the actual exchanges from the hearing, including testimony from medical providers, arguments made about Mila’s needs, and the way her disability, epilepsy, brain injury, and daily care were discussed.

Some parts are serious. Some parts are absurd. Some parts made us angry all over again.

This is the final chapter of this part of the story before we move forward to the next level.

We start out by doing what we always do, laughing as a form of comedic relief and trauma healing. We talk about:

• The state’s argument that Mila’s needs were behavioral or developmental
• Medical testimony about her brain injury, epilepsy, and ongoing care needs
• The claim that she “didn’t want to walk”
• Why supervision and hands-on care matter when a child is medically fragile
• What it felt like to put our daughter’s doctors on the stand
• Why we are still fighting

This is not legal advice or medical advice. This is our family’s experience, told in real time, with direct quotes from the hearing and our honest reactions as Mila’s parents.

If you missed Part 1, watch it here: https://youtu.be/SNfBZO1XdQE?si=l_A6CBlqW76hSpEw

If you are parenting through stress, disability, medical uncertainty, or just trying to hold your family together while life keeps coming at you, this episode is for you.

New episodes weekly on Apple Podcasts and Spotify.

If you listen on Apple Podcasts, leaving a review helps more families navigating trauma, special needs parenting, or hard seasons find this podcast — and the community around it.

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Resurface is the only podcast where two medical trauma survivors, each of us carrying invisible after effects, parent a medically complex child and special needs child together, disagree about many things, almost fall apart, and still choose to love each other through the storm. And try to make you laugh while we do it. We are not a recovery story. We are a survival story. The wave hasn't passed. We're still in it.

In this episode of Resurface, we start the way we refuse to stop starting, with laughter, marriage banter, and another round of Agree or Disagree. We debate whether the higher earner should get more say over money, why “we need to talk” texts are morally wrong unless immediately explained, whether one parent should override the other’s discipline, and whether all men should know how to cook.Then the episode turns to the heart of it: an update on Mila’s CAP/C waiver hearing against NC DHHS. Rachel walks Stephen through key moments from the hearing, including medical testimony about Mila’s birth injury, her prolonged seizure with status epilepticus, her hearing loss, the state’s attempt to frame her needs as behavioral or developmental rather than medical, and the judge’s decision to dismiss the case before the state ever put on its own witnesses. Stephen reacts in real time as Rachel reads portions of the testimony, the judge's comments, and the state attorney's remarks. And, we both explain why we will keep going.This one moves from funny to furious to determined, because that is basically the Resurface brand: real life, very few polished edges, and the refusal to stop laughing even when the serious parts are very serious.

If you are parenting through stress, disability, medical uncertainty, or just trying to hold your family together while life keeps coming at you, this episode is for you.

New episodes weekly on Apple Podcasts and Spotify.

If you listen on Apple Podcasts, leaving a review helps more families navigating trauma, special needs parenting, or hard seasons find this podcast — and the community around it.

Download your free Get Helped and Be Helped Checklist here: ⁠⁠⁠⁠⁠⁠https://www.resurfacepodcast.com/downloads⁠⁠⁠⁠⁠⁠

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Resurface is the only podcast where two medical trauma survivors, each of us carrying invisible after effects, parent a medically complex child and special needs child together, disagree about many things, almost fall apart, and still choose to love each other through the storm. And try to make you laugh while we do it. We are not a recovery story. We are a survival story. The wave hasn't passed. We're still in it.

This is about as raw and real as it gets - our daughter's hearing was denied. We will be back Tuesday with all of the details!

New episodes weekly on Apple Podcasts and Spotify.

If you listen on Apple Podcasts, leaving a review helps more families navigating trauma, special needs parenting, or hard seasons find this podcast — and the community around it.

Download your free Get Helped and Be Helped Checklist here: ⁠⁠⁠⁠⁠⁠https://www.resurfacepodcast.com/downloads⁠⁠⁠⁠⁠⁠

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Resurface is the only podcast where two medical trauma survivors, each of us carrying invisible after effects, parent a medically complex child and special needs child together, disagree about many things, almost fall apart, and still choose to love each other through the storm. And try to make you laugh while we do it. We are not a recovery story. We are a survival story. The wave hasn't passed. We're still in it.

In this episode we open with a round of fun and funny questions and answers.

We then move into the main topic where we talk about parenting a child with complex needs, the emotional weight of advocacy, and what it feels like to keep functioning when the system keeps pushing back.

We discuss speech therapy, medical and developmental concerns, CAP/C, and the reality of trying to help your child while also carrying the mental load of marriage, family life, and everything else that does not stop just because you are overwhelmed.

This is a conversation about the parts people do not always see, the pressure, the fear, the second-guessing, and the strange mix of love, exhaustion, humor, and survival that can exist all at once.

If you are parenting through stress, disability, medical uncertainty, or just trying to hold your family together while life keeps coming at you, this episode is for you.

New episodes weekly on Apple Podcasts and Spotify.

If you listen on Apple Podcasts, leaving a review helps more families navigating trauma, special needs parenting, or hard seasons find this podcast — and the community around it.

Download your free Get Helped and Be Helped Checklist here: ⁠⁠⁠⁠⁠https://www.resurfacepodcast.com/downloads⁠⁠⁠⁠⁠

Find us on TikTok: @⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠resurfacepod⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

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Resurface is the only podcast where two medical trauma survivors, each of us carrying invisible after effects, parent a medically complex child and special needs child together, disagree about many things, almost fall apart, and still choose to love each other through the storm. And try to make you laugh while we do it. We are not a recovery story. We are a survival story. The wave hasn't passed. We're still in it.

In this episode we open with a round of questions and answers.

They we move into the topic, talking about Rachel's trauma response she didn't see coming when her brain thought everything was fine.

Rachel talks about what it actually feels like when PTSD lives in your body instead of your thoughts, and how she recognized it as a trauma response.

Then Rachel ends up in the ER herself with chest pain and a concerning EKG, and Stephen has a trigger of his own that neither of them expected.

We talk about what it means to be two medical trauma survivors with our own lingering struggles.

Stephen shares a major update from his new stroke doctor, including finally getting the speech therapy referral Rachel has been asking for since Birmingham, and yes: he says the words.

The episode also gets honest about how stroke-related emotional dysregulation shows up in parenting, what it actually looks like, and what might actually help.

Plus the stolen back massage clip is still out there and Rachel has opinions.

New episodes weekly on Apple Podcasts and Spotify.

If you listen on Apple Podcasts, leaving a review helps more families navigating trauma, special needs parenting, or hard seasons find this podcast — and the community around it.

Download your free Get Helped and Be Helped Checklist here: ⁠⁠⁠⁠https://www.resurfacepodcast.com/downloads⁠⁠⁠⁠

Find us on TikTok: @⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠resurfacepod⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

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Visit our website: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.resurfacepodcast.com⁠⁠⁠⁠⁠

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Resurface is the only podcast where two medical trauma survivors, each of us carrying invisible after effects, parent a medically complex child and special needs child together, disagree about many things, almost fall apart, and still choose to love each other through the storm. And try to make you laugh while we do it. We are not a recovery story. We are a survival story. The wave hasn't passed. We're still in it.

00:00:00 Introduction and Easter update

00:00:42 Would you find out the baby's sex or be surprised?

00:04:06 What's the most impressive recipe you know?

00:11:00 If Rachel wins at the Supreme Court, what does she get?

00:14:18 What city exceeded your expectations?

00:18:01 When your body knows what your brain won't admit

00:26:08 Mila's procedure and Rachel's trauma response

00:30:33 Stephen had a trigger too

00:36:13 Rachel ends up in the ER

00:36:49 Rachel was right: Stephen finally gets a speech therapy referral

00:43:57 How the stroke has affected parenting

00:51:02 The stolen back massage video update

Ten months ago, a doctor accused me of something awful and wrote it in our daughter's chart. I stayed silent. Today I'm speaking.Mila was four years old. She was six weeks out from her first seizure: status epilepticus that lasted at least 25 minutes.We were in the hospital for EEG monitoring during a medication wean when a neurologist asked me, to my face, why I wanted my daughter to have a seizure. Then she slammed the door and wrote it in the chart.This episode is everything that happened in that hospital room: what I saw on the EEG, what I did to fight for her care, what it cost me to stay silent for ten months, and why I finally stopped.If you have ever been dismissed, accused, or made to feel like advocating for your child or loved one carries risk, this episode is for you.
New episodes weekly on Apple Podcasts and Spotify.

If you listen on Apple Podcasts, leaving a review helps more families navigating trauma, special needs parenting, or hard seasons find this podcast — and the community around it.

Download your free Get Helped and Be Helped Checklist here: ⁠⁠⁠https://www.resurfacepodcast.com/downloads⁠⁠⁠

Find us on TikTok: @⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠resurfacepod⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

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Email us: [email protected]

Visit our website: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.resurfacepodcast.com⁠⁠⁠⁠

Find us on Threads: https://www.threads.com/@theresurfacepodcast

Resurface is the only podcast where two medical trauma survivors, each of us carrying invisible after effects, parent a medically complex child and special needs child together, disagree about many things, almost fall apart, and still choose to love each other through the storm. And try to make you laugh while we do it. We are not a recovery story. We are a survival story. The wave hasn't passed. We're still in it.

0:00 Opening + agree or disagree6:22 Falling asleep during arguments + going to bed angry10:58 ChatGPT Pro vs Claude + Epic MyChart discussion20:45 Parenting humor: hair dye + paperwork burden25:29 Stephen signs off, shift to serious story26:01 Why I stayed silent for 10 months26:22 Mila’s history, HIE, and first seizure (status epilepticus)27:16 Hospital stay, EEG monitoring, and medication wean30:16 Infection, fever, and rising seizure risk32:53 Panic attack and hospital rounds34:29 Doctor dismisses EEG concerns36:41 “Why do you want your daughter to have a seizure?”37:19 Confrontation, door slam, and chart documentation39:44 “I will not touch this child’s head until the mother calms down”40:41 Reattaching EEG leads and advocating for care43:14 The doctor who helped45:42 Fear of CPS and why I stayed silent48:00 Working from the hospital under pressure49:54 Getting EEG records and calling Boston Children’s52:18 Dr. Pearl and building Mila’s medical record54:49 Second opinion and finally getting answers55:35 Transitioning care to Charlotte neurology56:11 What should have been explained58:02 Filing the complaint and correcting the record58:53 To parents who have been dismissed or accused1:00:15 I am still afraid to advocate

We're making a decision that can't be undone.In this episode we take you inside our visit to UNC Children's Cochlear Implant Center; what we learned, what surprised us, and the moment we realized we were finally in the right place. We talk through why we chose one ear at a time, what happens when a child wakes up from cochlear implant surgery without any hearing, and the fears we have.We also cover Mila's MRI and CT scan, a third set of ear tubes, four surgeries back to back, and what it means to be fighting a Medicaid denial at the same time all of this is happening.Plus the agree or disagree segment is back! Voicemails, rewatching shows, messy cars, and skipping showers as self care. Comedic relief is a must.

If you are a medical mom, dad, or special needs parent, this podcast episode is for you and to you.

Resurface is the only podcast where two medical trauma survivors, each of us carrying invisible after effects the world stopped asking about, parent a medically complex child together, disagree about many things, almost fall apart, and still show up and choose each other. And try to make you laugh while we do it. Not a recovery story. A survival story. The wave hasn't passed. We're still in it.

New episodes weekly on Apple Podcasts and Spotify.

If you listen on Apple Podcasts, leaving a review helps more families navigating trauma, special needs parenting, or hard seasons find this podcast — and the community around it.

Download your free Get Helped and Be Helped Checklist here: ⁠⁠https://www.resurfacepodcast.com/downloads⁠⁠

Find us on TikTok: @⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠resurfacepod⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

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3 days before a court deadline, our daughter's lawyer left her case. In this episode, we talk about our fight with Medicaid, specifically CAP/C. We discuss the impact suddenly being left in the lurch has made, the upcoming battle ahead, and our fears about what this might mean. We will never stop fighting for our daughter, and fighting for her means we are also fighting for other children with invisible disabilities. If you are a medical mom, dad, or special needs parent, this podcast episode is for you and to you.

Resurface is the only podcast where two medical trauma survivors, each of us carrying invisible after effects the world stopped asking about, parent a medically complex child together, disagree about many things, almost fall apart, and still show up and choose each other. And try to make you laugh while we do it. Not a recovery story. A survival story. The wave hasn't passed. We're still in it.

New episodes weekly on Apple Podcasts and Spotify.

If you listen on Apple Podcasts, leaving a review helps more families navigating trauma, special needs parenting, or hard seasons find this podcast — and the community around it.

Download your free Get Helped and Be Helped Checklist here: ⁠https://www.resurfacepodcast.com/downloads⁠

Find us on TikTok: @⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠resurfacepod⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

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When two medical trauma survivors clash together and try to raise a family, it's not always easy. It's messy, complicated, emotional, and incredibly challenging.

What happens when they do it on camera, in front of a microphone?

From bank account anxiety, to PTSD's affect on our marriage, to a fun and funny round of agree or disagree, we sit down and hash things out as a married couple that still chooses each other each day. Resurface is the only podcast where two medical trauma survivors, each of us carrying invisible after effects the world stopped asking about, parent a medically complex child together, disagree about many things, almost fall apart, and still show up and choose each other. And try to make you laugh while we do it. Not a recovery story. A survival story. The wave hasn't passed. We're still in it.

New episodes weekly on Apple Podcasts and Spotify.

If you listen on Apple Podcasts, leaving a review helps more families navigating trauma, special needs parenting, or hard seasons find this podcast — and the community around it.

Download your free Get Helped and Be Helped Checklist here: https://www.resurfacepodcast.com/downloads

Find us on TikTok: @⁠⁠⁠⁠⁠⁠⁠⁠⁠resurfacepod⁠⁠⁠⁠⁠⁠⁠⁠⁠

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Life is chaotic. So first, we laugh. In this episode of Resurface, we move from comedic relief into the real dynamics of marriage, parenting, and raising children in a medically complex family.

We talk about:

• Marriage communication in chaotic seasons

• Parenting multiple children with competing needs

• Balancing structure and survival

• Identity shifts in fatherhood and motherhood

• Sibling dynamics in special needs families

• Caregiver exhaustion

• Finding humor when life feels overwhelming

There’s a story in this episode that deserves its own space. And a current struggle we’re still actively figuring out.

If you're navigating: Special needs parenting.

Parenting siblings of a medically complex child

Marriage in stressful seasons

Caregiver burnout

Marriage after trauma or medical crisis

Trying to prioritize all of your children when one requires so much attention...

You’re not alone.

Follow Resurface for honest conversations about marriage, family, trauma, healing, and finding your footing again when life knocks you under the surface.

New episodes weekly on Apple Podcasts and Spotify.

If you listen on Apple Podcasts, leaving a review helps more families navigating trauma, special needs parenting, or hard seasons find this podcast — and the community around it.

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