Take Heart

It’s Ok to Feel: Sara’s Story

• Amy J Brown, Carrie Holt and Sara Clime • Season 3 • Episode 130

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When Sara, Amy and Carrie met, they discovered a shared sense of determination and drive to care for their children and support each other. In their new book, The Other Side of Special, they share their individual stories and hope to offer encouragement and hope to other special needs families. Sara discusses her struggles with emotions towards God, the challenges she faced in caring for a child with disabilities, and the importance of relying on God and her community for support. She shares that despite not being alone, she often felt lonely. Sara expresses that the special needs family community understands you like no one else does. 

Ep.130; May 30, 2023

Key Moments:
[0:43] Receiving a diagnosis changed our lives
[3:13] Feeling alone despite having loving and supportive family and friends
[5:19] Suppressing messy emotions causes anger
[8:11] Feel various emotions and struggles, but find solace in God and supportive friends
[13:10] Bonding over the slew of emotions that a caregiver feels

If you enjoyed the show:

Sara Clime
Welcome to Take Heart, where our goal is to offer encouragement, and give hope and insight, so you can flourish in your journey as a special needs mom. As we explore monthly themes, share inspiring stories and practical tips, our desire is for you to feel connected and encouraged. 

Hi, this is Sara Clime. At the beginning of this month, Amy, Carrie, and I came together to share our story on how we came to write our new book, The Other Side of Special: Navigating the Messy, Emotional Joy-filled Life of a Special Needs Mom. Amy and Carrie have both shared their individual stories as well over the past couple of weeks, their story of what this book means to them, and why they wrote it. It is both really simple yet complex and a bit raw, which is why I wrote this book. I have one of the best support systems anyone could ever hope for. I have family, friends, and an amazing community. Literally, the neighborhood, church, school district, city, any way you can define community, well, I have it in spades. I don't say that to boast, I'm trying to explain what I'm about to share. I guess I'm setting the stage for those who are and aren't parents to those with disabilities, complex medical or special needs. You see, no matter what support system you have, no matter how close you are to your family and friends, and no matter how involved or immersed you are in your community, when you as a parent receive a diagnosis for your child that alters their lives, your life suddenly becomes two. There is a life before diagnosis and a life after diagnosis. That's not to say life stops. It may have seemed like that at the time. When I was told, my son was terminal and he would slowly lose function in every muscle of his body, including his heart and lungs. Yes, I felt like my heart might as well have stopped beating. I felt like my life might have stopped at that moment. There was no one, and I mean no one in my life, other than my husband, that got me. Do you know what? Actually, even my husband didn't really even get me. You see, my husband had his own demons and his own battles to fight. He's the dad. He was grieving like me, but he had his own role to play in this life. Even though he got what I was going through, and I got what he was going through, we didn't truly understand the depth of the battle each other was going through. Our traumas were rubbing against each other, and they rubbed often. Sometimes we even tried to keep our pain from each other so as not to multiply or amplify each other's devastation. We now know that was the wrong thing to do. But we were doing the only thing we knew how to do at that time for two inexperienced parents of a child with disabilities. We were doing it out of love. Even people like my sister, who knows everything about me, no holds barred. She knows the nitty gritty, dirty, messy, everything about me; she did not understand my pain. Sure, she empathized. If she could take my pain, she would have. She could see there was pain in my eyes, but she would never ever understand the depth of it. She could never ever get to. I felt alone for a long time, I was alone amid a solid and plentiful group of loving and supportive family and friends. I think you, the moms and dads and caregivers out there that are listening are the only ones who truly understand what it's like to feel alone yet surrounded by people, even those who are loving and supportive. I think that when you feel that alone when you are surrounded by loved ones who want to help, it somehow makes you feel more alone. 

So, bring on the guilt. Not only did I feel isolated and alone, now, I felt guilty and unappreciative. Oh, Sara, you're a good, kind, and strong Christian woman. Let's not talk about it. You need to power through and bury those feelings, and you need to bury those deep. Time marched on, and my guilty, lonely self was raising this child whose friends started to move on without him. They started to do things that my son could no longer do. I had to deal with Christmas and birthdays when I could no longer buy bikes, scooters, or baseball bats. Yep. Hop on jealousy. There's plenty of room for you too. Oh sure, sadness and grief, you already had a front-row seat. We didn't forget about you. Now good ole little Christian girl Sara, she's grieving, lonely, guilty, and jealous. Fun times. She still isn't going to talk about it. That would make sense. God is good. God is enough. God has a plan. Now, please hear me; hear my heart. I believe wholeheartedly in everything that I am, that God is good. God is more than enough, and God does have a plan that far exceeds anything that I could conjure up in my mind and heart for my son, for myself, and for my family. 

However, those are words and phrases that weren't penetrating my negative emotions at that time. I didn't feel that I could hold those messy emotions:, the grief, the jealousy, fear, loneliness, and anger, all while I was holding the love of my Lord. I didn't feel that I could hold the love of the Lord and all of those messy emotions. I mean, you can't do that, right? Well, you can't feel the messy emotions for too long. I mean, you got to speed those up, right? I carried that confusion alone for way too long. Instead, I let anger fester quietly toward my situation. When you don't let the messy emotions out, they plant seeds. For me, those seeds grew into a massive growth of anger toward my situation and toward God for not stopping what was happening to my son and to my family. I didn't want to be a mom to a terminal child who had complex medical needs. I didn't want to be a part of this new special needs and disability community. I didn't want to be a mom to a child with disabilities and complex special needs. Again, please hear me; there is nothing wrong with being disabled. There is absolutely positively nothing about having disabilities that make you less than anybody else. There's absolutely positively nothing wrong with being a mom to someone with disabilities or complex medical needs. I have received more blessings over the past decade than I could ever have experienced. Truly, truly, I am blessed. I know that now. I am simply explaining my mom's heart at that moment. I was hurting for my child, for my family, and for myself, if I'm honest. I knew my son was going to have a harder life. Quite honestly, as a parent, I was too because the disability world was new to me. No one in my family or close circle of friends had disabilities. I simply wasn't familiar to living with someone with disabilities. Like anything new or unfamiliar, we humans oftentimes find those circumstances intimidating or even unwelcome. 

Now 11 years post-diagnosis, living with someone with disabilities, the ramps, scooters, wheelchairs, medication cabinets, or yelling, "That's not what the blue lines are for, people, get out," every time we go to park in a public parking lot. That life no longer intimidates me. It is what it is. That's our normal. I, still, after 11 years post-diagnosis, feel all of those messy emotions, I still feel the grief, guilt, fear, anger, jealousy, and all the other mini emotions. I still find myself feeling lonely, even though I'm never alone. The difference between who I am now and who I was immediately after diagnosis is that I now know how God helps me navigate all those messy emotions. I also know if I allow myself to open up to other like-minded strong women and caregivers who get it, who understand the constant struggles of being a mom to a child with disabilities, my life goes a lot smoother than if I sit alone and my own crazy adult brain. Because trying to navigate my brain and my emotions solo, well, y'all. It's no joke. It's tiresome up there. I need God, and I need therapy, and I need my girls. I remember feeling so lost a few months after diagnosis. Knowing my son's life, I knew it was worth living. I knew he was amazing.  Knowing without a shadow of a doubt that his diagnosis did not define him, I had no idea how to get past my own grief, my own fear, the mom guilt, the jealousy, or the insecurities to be the mom he needed. You see it wasn't that I saw my son as less than because of his disabilities. I knew he would require more care, and I saw myself as less than a mom. Was I going to be woman enough to answer the call God placed on me? My son, his brother, and their dad needed a strong woman in their life, and I felt broken. I felt lost. To be honest with you guys, I was scared. Was I going to measure up? I remember standing alone in a local bookstore, searching for any book to help me navigate the crazy emotions I was feeling. Everything I saw was specific to a certain diagnosis. Nothing seemed to say, Sara, it's okay you feel this way. It's okay; you're gonna feel this way again. You're strong enough to work through it time and time and time again. Oh, and did you know you're not alone? Did you know other moms are out there may feel this way too? Go find them. Sara, go find your tribe. 


I joined a writers' group in early 2020, and I met two lovely women named Amy J. Brown and Carrie M. Holt. By the way, I don't use their middle initials when I think or speak about them in normal life. I feel the need to say that here. It's really odd that I have to use their middle names on this podcast. I felt the need to say that. Anyway, I digress. Amy and Carrie, they changed my life. Little did we know that when we first met for the first time in March of 2020; literally a week before the world shut down...When we met in San Diego, we thought that we would start a podcast that September. We had no idea or that we would later write a book about navigating the messy, emotional, joy-filled life of being a mom to these amazing children, to these amazing humans that we're blessed to parent. After we met for the first time, we sat down to get to know each other. We quickly realized that although our children were all different ages, genders, and some even different races, they had vastly different diagnoses. Our stories were so amazingly different. We all had the same emotions in common. We felt the same at our core. That was extremely powerful to each one of us. If we felt the same, and we all lived in different parts of the country, there had to be other mamas out there like us. As the podcast went on, and it didn't take more than a season to realize it, we knew that other moms out there and other caregivers were going to bond over the slew of emotions that came with being a caregiver as well. Do you know what else comes with being a caregiver? The determination and drive to love our children, to care for them, to love ourselves, and to be there for each other. Because no matter how much we love our children, this isn't an easy gig. I'm figuring out that we are all pretty amazing. 

If I could go back to that Sara, who is standing in that bookstore, who's standing there so lost and so numb, I would walk up to her and invite her to go for a walk or to go for a cup of coffee to a little coffee shop that was right down the street. She'd go because she was too numb to care that I was a strange woman asking her to go for a cup of coffee. I would tell her that I too, was a mom to an amazing child with disabilities and that I understood what she was going through. I would tell her the truth. I would not sugarcoat it. I would tell her it's hard, and it wasn't going to get any easier. It would be more manageable. There are other women out there like her. I would tell her that she can't see it now, but this life, the one with disabilities involved, is more difficult because that's how society works. But it is an amazing life, nonetheless. I would tell her that there are blessings we get that those with "typical lives" will never truly understand. I would tell her that the fact she was searching for answers, numb as she was, was proof that she had this. I would tell her that there is a community of us amazing mamas who get her. We don't have it all together. Heck, we're hot messes 99% of the time. But that's what makes us real. We don't pretend to have it all together. What you see is what you get. 

The great thing is that we don't have to pretend. We have a heavenly Father that does have it all together. He is reliable. He is the real deal. That is why I wrote the book. I want others to know. One, it's okay to feel what you feel, even the nitty gritty, embarrassing feelings you'd rather keep hidden. I said some things about God and directly to him that I felt guilty about for a long time. A second reason I wrote this book is I want to let God help you navigate those feelings, even if they are toward him. He longs for you to come to him openly and honestly so you can build a relationship with Him built on truth, grace, honesty, and love. He is understanding and forgiving, trust me. If he can offer me forgiveness, grace, and love after some of the temper tantrums I threw, and the nasty things I threw at him, he can handle what you bring to him. Go to him humbly and with an open heart. The third reason I wrote this book, I wanted other moms who feel alone, whether they are surrounded by people or not, to know without a shadow of a doubt that they are not alone. You are seen, and you are heard. You are loved, and you are understood. You have a tribe of people who know how you feel. We get you. Welcome to Take Heart, and welcome to the other side of special. 

I've not done this before, but I truly struggled with my anger toward God for a long time after my son's diagnosis. I grew up Christian, and a big part of why I wanted to write this book was the difficulty I had overcoming the anger I had towards God. More importantly, how God's grace worked in me when I finally released that anger. Y'all when I say I released it, I mean, I unloaded it in a spectacularly messy fashion. I said some horrible things to God first. It absolutely makes me tear up whenever I think about it. The only reason I refuse to feel guilt over what I said to God was that He gave His Son, Jesus Christ to die on that cross for that sin of mine. I don't want to hold on to that guilt and waste that precious gift God gave to me. If you are having a difficult time right now with some emotions you have towards God over your child's diagnosis or anything, please know that you are not alone. I was there for a long time. I was ready and willing to walk away from my faith. I almost did. If you are feeling conflicted towards God and would like to talk to anybody, please know I'm willing to have a judgment-free conversation. You can reach me at sara@saraclime.com. My email and a link to my calendar will be in the show notes. Email me. We can set up a time to talk. I would love to hear from you. 

Thanks for joining us this week on Take Heart. Our prayer each week is for your heart to be encouraged. We are grateful you are walking on this journey with us. If you have any questions or comments, follow the links in our show notes. We love hearing from our listeners. There are links to anything we mentioned in this episode, show notes, and all of our resources, including an entire written transcript of this episode, are available on our website at www.takeheartspecialmoms.com.