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The Special Needs Mom Podcast

Think of this podcast as your very own special needs mom support group--except it's helpful and fun! You will leave with the hope that you can have a super happy life even when your life includes parenting a medically complex child or a child with something like autism and ADHD.

You likely didn't ask to be the parent of a disabled child or to live portions of your life in the hospital NICU or PICU. Your story is unique; it’s hard to find a place where you belong or where you don't feel so isolated and alone. Your child might have a rare disease, be undiagnosed or experience something that almost everybody has heard of like Downs syndrome yet the weird thing is that whether your child has an intellectual disability or physical disability, the experience as a mother is so similar. So regardless of your child’s disability, we can all find a home in this community.

You find yourself managing everybody else's needs; your child, their siblings, and all the guilt that you have about that. All this has you feeling overwhelmed, anxious, and dizzy---not knowing who to turn to or what to do next for help. This podcast is your lifeline, you’ll find encouragement and inspiration as we connect to other moms’ journeys. We’ll get practical and look at what it takes to stop feeling so stuck in your life.

You know this podcast is for you if you find yourself googling:

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The Special Needs Mom Podcast

Anger. Rage. Fear. Surrender. Repeat.

September 25, 2024 • Kara Ryska

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This week, to take care of myself, I’m hitting pause on a full episode. In its place I have something special for you: I’m sharing my contribution to the anthology Becoming Brave Together: Heroic, Extraordinary Caregiving Stories from Mothers Hidden in Plain Sight.

My piece, titled Anger. Rage. Fear. Surrender. Repeat. takes you through the raw emotions of caregiving—navigating medical systems, grappling with endless appointments, and finding peace in moments of surrender. It’s a deep dive into the realities we face but rarely talk about.

If you connect with this, you’ll definitely want to grab the anthology—it’s packed with stories from incredible moms, just like you.

Enjoy, and we’ll be back next week with a regular episode!

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
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Hello and welcome to the Special Needs Mom podcast. This is part two of what I'm calling an un episode episode. You can go back to listen to last week for a little bit more explanation, but the bottom line is I am not producing a full episode this week and the intention behind that is to care for myself. So bottom line is I didn't have what I needed to give to produce the episode for the podcast. And so this week is a creative solution. I am going to be reading my contribution to an anthology that was published May of this year, and the anthology is called Becoming Brave Together. Heroic, extraordinary caregiving stories from mothers hidden in plain sight. Now, If you're new here, you might not have heard me talk about this anthology, and it was a compilation put together by the organization called We Are Brave Together. I highly encourage you to purchase this book. Mine is one of, I think, 20 contributions. It was such an honor to be part of this, and so I'm going to be reading my contribution today for your listening enjoyment and hopefully deep connection. And I invite you to go purchase the whole anthology because this is just like the surface. There are so many amazing women with their own stories, just like your story. I believe you will feel connected, seen, heard, and validated. And with that, here is my contribution. It's called Anger, Rage, Fear, Surrender, Repeat. I listened to the recording on the other line. If you'd like to make a change or cancel an appointment, please press 1. If you need to speak to the administrative staff, please press 2. If you need to speak to a nurse, please press 3. I press option 1, even though I am tempted to press option 2 and cheat the system to get to the help I need. The heartless sounding voice on the other side asks, Patient's name and date of birth? I rattle it off. I say this date so often that it's the automatic answer I burst out whenever I'm asked my birth date. She continues, Address and phone number? I struggle to focus. I shut my eyes and recite these facts as if I'm going for first place in a spelling bee. I don't know why it takes so much focus, but I know I am annoyed. The annoyance grows into full blown rage when she asks me to confirm my insurance information. I know they ask us every time, yet every time it makes me more and more mad. I want to yell at her. I have already answered these questions three times today. I contain myself, but I am sure my irked attitude comes across as I answer. I am ruminating about the ridiculous pop quiz and how, if they had any idea what it was like to be in my shoes, then they would stop this senselessness. But I already know my rage is about something deeper than that. It's the appointments we go to one appointment after another, each trying to solve the unsolvable problem. My son's pain. We futile attempt to address my son's many disabilities. Some appointments I leave with hope, but most I leave with more discouragement. The discouragement flows into overwhelm. As I listen to recommendations for yet another appointment, or worse, a bunch of things I don't have time to do lately, the season of discouragement seems to be dragging on digging the hole deeper and deeper. Despair is bubbling up as the thought that this won't end. And I need to accept this as our new normal. I resisted the idea of grieving even more. We were rebounding from my son's latest brain tumor resection and rebuilding after 30 rounds of proton beam radiation. Every time we seem to be gaining momentum and seeing glimmers of improvement, something happens. that beats us back down. Recently we bounced from specialist to specialist in an attempt to address mysterious leg swelling and debilitating knee pain. I watched my son go from walking most of the time to using his wheelchair most of the time. After months of playing their game I had enough. The medical system pushed me to my edge. I couldn't take any more of this. I took him to the emergency department with the intention of staging a peaceful protest. I was clear with myself and with them that I wasn't leaving until I got my son the help he needed. I succeeded, but not without triggering my already very fresh hospital trauma. These humps and hurdles seem to be coming faster and lasting longer. My stamina and spirit are doing the opposite. They're rebounding slower and struggling to come back to life before the next blow comes. Last month, it was the hospital event. Last week, it was blood draw drama. This weekend, it was coming up with a creative solution to obtain an unaffordable medication from Canada. Next week, it'll be fighting with insurance to demand a referral to a specialist who's impossible to get into, which I will likely be denied. An event at the nail salon put me over the edge. I took my son to the evening appointment, which was part of our monthly maintenance routine for his ongoing nail situation. Yet another painful condition that seems to have no good answers. His toes don't cooperate, and he's constantly and uncontrollably clawing them into the ground, and his toenails definitely show it. Our regular pedicurist looked at me, shaking her head, turning us away, informing me that we had gotten to the point. That was beyond her help. See, we needed to seek the help of a doctor. I watched her and listened to her. I nodded in compliance, but inside I was losing it. I thought we had this managed. And we were dealing with it. It's too much. I'm too tired. I pictured myself writing another email to the doctor, facing another unsolvable problem, dealing with another issue for me to get stuck in the spin cycle of senseless system. Nope. It was too hard, too much to ask. I needed a break. He needed a break. My normally overactive optimism can't rebound fast enough for how quickly the blows keep coming. My energy returns to anger. I narrate conversations in my head about how wrong this is and justify being so enraged. I let the anger rise up about how my son has an unfair amount of struggles. I am pissed that it has to be him and that he can't catch a break. I'm infuriated about the medical system that is not working for us. I'm mad that I feel forced to keep playing this game, yet have grown to expect that no matter how hard I work, I still feel like I fall short for my son. Then I feel resentful that it's taking so much energy. Anger has been my go to lately. More and more of my time in this state, or with anger's cousins, frustration and annoyance. I don't like the person I am when I stay angry like this. I don't like how it feels to spin the stories I constantly rewrite in my head. I don't like how these stories feel, but they do feel safe. So I return to them as a small source of refuge. The familiar anger lets me hold on to a small sense of control. This feels especially critical when I am desperate to escape the vulnerability of the feeling that I've been avoiding. After I received the toenail news, I deflated. When my husband got home that evening, I told him I was going to the backyard. I wasn't asking, I was telling. I was desperate for some space away from it all. Just a little break, space to cry it all out, cry about all that my son persists through, but mostly, all that I've persisted through. That night, I sat in the shade underneath a pergola covered with shiny green passion vine, creating a cozy and protected space. I put words to the madness. I punched the keys and poured out my feelings and fears and allowed myself to let the extent of my fear rise up without trying to manage or contain it. I felt it, I named it. I reclaimed my power, but this time it felt better, stronger. As I allowed the tears to flow down my cheeks, it was like I was washing out all the trials of the past to make room for all the trials of the future. I realized I'm so deeply scared and I don't like to admit it. Being so scared makes me feel so fragile. I hate that it's asking me to open up to even more vulnerability. And it already feels like too much to endure. I connect to all the fear I operate in on a daily basis. I'm scared that it won't get better, scared that I won't get him the help he needs, scared for the impact of this on my life, scared I'll give up and hate myself for it. It's already too much to manage, and I'm scared of the possibility of adding even more. I'm scared the impact on my other kids is too damaging, and that I'll fail them too. It's already physically demanding and I'm scared that the day will come soon when I can't physically do what I need to do. No wonder I'm anxious. I live in the land of giving all I've got for a better future, but live constantly on the edge of losing it all. In the hustle and bustle of trying to hold it together, I overlooked what I really needed and that was to surrender. I was depleted from trying to hold on to that which is not holdable. This was a familiar lesson to me. I've had to learn it over and over again in the past 12 years of parenting through my son's diagnoses. I resist letting go. It takes moments like these when I feel the most broken. I am forced to acknowledge why I am so tired and find my way back to the state of surrender, which is my only path to peace. As I sit there and start to feel the relief of the surrender and allow the impact of admitting just how scared I was, I think of all the other moms who were in my circle. Those who get what it's like to do all the appointments. Those who have heartbroken kids with no birthday party invitations. Those who constantly wonder if their child will be okay. I picture all the women who get it, who live this alternative, sometimes awful, most of the time painful, but still very beautiful life. The thoughts and visualizations of them ground me even deeper. I picture them in their homes with their children, struggling just like me. I see them afraid, I see them push forward, digging deep and going beyond what they say was even possible. I see them tapping into a power beyond their own humanity. I too connect to this higher power that doesn't lean on any overly quoted Bible verse, but a lived experience of God's power and presence. I connect to the power that has us choose life. I connect to the worthy endeavor we are all fighting for. I see the bigger picture that's only visible when I let go. I find rest. I enjoy the comfort and peace of reconnecting to who I know myself to be. I live with the assurance I will find myself here again, stuck in resistance and forced to surrender. But I will also find my way back to this place of peace. Alright my friends, we'll see you next week.