Take Heart

An Un-Disabled Mindset: Sandy’s Perspective Shift As a Special Needs Caregiver

• Amy J Brown, Carrie Holt and Sara Clime, Sandy Ramsey • Season 5 • Episode 172

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Carrie M. Holt sat down with Sandy Ramsey-Trayvick, author of the new book, "When Dreams Are Disrupted," to talk about Sandy’s mindset journey as she was forced to step into the role of caregiver for her child.  When a childhood illness changed the life of her son, it left her feeling helpless. In this episode, she shares what God revealed concerning her choices and how she’s been working with this new set of options God has given her. This conversation with Sandy will inspire you to choose an “un-disabled” mindset as you raise your child with disabilities or special needs and fill that role of caregiver.

Ep. 172: October 15, 2024

Key Moments:
[1:45 ] God-given choices persist despite diagnosis
[12:15] Humans struggle to believe God's unconditional love
[17:12] Trustworthy friends dispel irrational fears
[27:30} Parents impact children but should prioritize just being present
[31:35] God handles outcomes; human understanding is limited

Resources:
Undisabled Lives Website
Sandy’s Coaching
When Dreams Are Disrupted
The Bix Six: Things Kids Need From Their Parents: Adam Young

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Carrie: Hi there, it's Carrie today, and I'm very excited about this episode. You're listening to episode 172 entitled Choosing the Undisabled Mindset: Sandy’s Perspective Shift as a Special Needs Caregiver, a conversation with Sandy Ramsey-Trayvick. I had the privilege of speaking alongside Sandy at the By the Brokk Conference this summer, and she has taught me so much in the short time that I have known her. Sandy and her husband of 33 years live in New Jersey, and they have three young adult children. She became a special needs mom, caregiver and advocate 24 years ago after a childhood illness left her son with multiple disabilities. Sandy now works as a certified professional coach with the desire to help other special needs parents discover the powerful story that God wants to write through their family's unique special needs journey. Sandy is also a writer, a speaker, a community group leader for other special needs moms, and a frequent podcast guest. She just released her first book, When Dreams Are Disrupted, A Story of God's Faithfulness. You can learn more about Sandy, her work, and her blog on her website, undisabledlives.org, and Instagram @undisabled_lives. I'm excited for you to hear this conversation that I had with Sandy today.


Hi Sandy, thank you for being with us on the Take Heart Podcast today. For our listeners who don't know you, can you tell a little bit about yourself and your story? 


Sandy: Okay, well first, Carrie, thank you for having me. I'm thrilled to be here. I've listened to your podcast repeatedly because I am a target, one of your targets, and so I'm just so glad to have the opportunity to talk to you face-to-face. I am the mom of three young adults: one 29-year-old and two 25-year-olds. One of my twins, my son, got sick as a toddler with meningitis, which has resulted in multiple disabilities for him as well as some medical challenges. As a result of that, it required me to come home to be his caregiver, medical caregiver, and advocate. I've been doing that for almost 25 years, it's kind of hard to believe that it's been that long. I am married to my husband, Terry, my teammate. He and I are really, the more I think about it, such a great team. It'll be 34 years in September, which is also hard to believe.
What else can I tell you? I live in New Jersey. That’s a little bit about mean, and I'm a coach. I coach other special needs parents.


Carrie: I know your website is undisabledlives.org, and when I was looking through your website and your free resource that's on there, I thought you have a niche, that idea of having a disabled mindset. Can you explain what that is and how we get stuck in it? 


Sandy: First, let me say the idea of a disabled life mindset came from the Lord. He showed me that I had one and some of the symptoms that he showed me. I  had gotten stuck at a point where because my life was so vastly different as the mom of a child with special needs than it had been before, so vastly different than what I'd expected it to be, so vastly different from everybody's life around me that I felt, I don't know, stuck in a place where I didn't feel like I could move forward. I think that because I hadn't made the choice to be there - to be the mom of a child with special needs; nobody makes that choice. Well, I shouldn't say that. Some people do because others choose to adopt, so that's a different thing. But for those of us for whom a diagnosis is handed down unexpectedly, I didn't have a choice in that, I assumed that I didn't have other choices. I forgot about the fact that God has actually given us choices, even in the midst of hard things. He’s allowed our circumstances to be the reason why we couldn't do anything. I noticed, too, that the longer I was in that space, the more my husband was not thinking the same way. I will say that other women I've spoken to have said the same thing. They experienced this, but for whatever reason, their husbands did not. They found a way to continue moving forward with their lives. The idea of a disabled mindset came from that. The Lord told me that, yes, there's a disability that has affected your life, but your life is not disabled. You still have the same choices you used to have. The same things that you believed about me before are true now. My plans for your life have not changed. You didn't expect this, but this is not a surprise to me. He also gave me Undisabled Lives as the name of the ministry because what he showed me was Christ came to set us free, right? To enable us, to undisable our lives. That is true even for families that are affected by disabilities, that there is a way forward in this, for us, with Christ that he has walked out and that based on the choices that we make and what we believe that he will help us to walk out with him. 


Carrie: It's interesting. I think one of the reasons why it resonated with me was becasue we went through a period of time with our son where he's cognitively able to understand and recognize the differences that he has compared to even just his own brothers. He's in a wheelchair. He's not able to play sports at the same level of his siblings. I was talking to a friend about it because he was grieving that and why did God make me this way, and why am I disabled? 
My friend said something to me. She said, “but the greatest disability is us not knowing God.” Do you have any thoughts about that? 


Sandy: I agree with that. As I said, Jesus came to undisable our lives because sin in the world has disabled all of us, whether or not we recognize it. I would say that for those of us who do know Christ, not living in the fullness of what Christ has died for us to have allows that disability to continue. Before Him, we're just stuck. But once we receive Him in our hearts as our Savior, He gives us a way to move forward, even in hard circumstances, in a way that we will have joy. We will have a sense of purpose. Not to say it'll be easy, but there can be joy in the hard, purpose in the hard. The enemy gets so much traction in our lives because sometimes we expect that following Christ means a life of ease, and anything short of that makes us feel like he's holding out on us. We know that that's not true. What he's promised and what your podcast is based on is that. Yes, there will be trouble. We can take heart because he has made it so that the trouble can't have victory over us. We can still live full,  joyful, and purposeful lives. in the midst of it. As I've spent more time understanding this idea of undisabled lives as the Lord has shown it to me, I realized that I have more and more of a passion to see parents of children with disabilities and even other people who are who may be living in a way (I hate to say less than), but is not reach the fullness of what God has for us. Because I hate to see the enemy win, if God has things for us out there, then we can make the choice to move forward. I want it. I want my kids to have it. It's a hard thing. I don't want to paint the picture that…Well, now that I realize that I have all these choices and I no longer have a disabled life mindset, well, now I don't have any issues. I don't think it's hard. They're not things that I disagree with. They're not things that I cry over. There still are.


Carrie: it's that tension. It's just because we have chosen to have an undisabled mindset that we have a choice. We're not just victims of our circumstances like the seaweed floating on the waves and going wherever it leads. It still doesn't make it easy. It still doesn't mean that some days aren't really hard and that we don't have to choose over and over and over again.


Sandy: that is exactly what it is. It's a choice that we have to make every day in any circumstance because it's easy to get sucked back in.


Carrie: I know one of the things I've really struggled with through my journey is feeling like, OK, I paid my dues with a prenatal diagnosis or my son having 62 surgeries. Lord, I get a free pass for the future. I think sometimes that is a mindset that I have when something new comes up:  a new trial, a new diagnosis, a new hardship has come up. It has blown me over. It's been wave after wave crashing over my life, and you have to reorient. What advice or wisdom would you give to reorient yourself when the new waves are coming? I know you're still facing this also. 


Sandy: Yeah, we got new information about Myles that kind of took me back a little bit. But what you just said - to reorient ourselves, to not let it suck us under and remember. God called us to remember in scripture what he's done in the past because, honestly, that's one of the things that helps strengthen us for the future. I've gotten into the habit of when God does something super special that makes my heart feel seen. I'm not one of those gratitude journalers where every single day I got to write five things. I don't do that. But when he does something where I think God, I know that you see me. I didn't tell anybody else about that. You didn't have to, and it would have been okay. I write those things down because as I go back to read those things (the little things that don't mean anything to anybody but me), I know then that reminds me that God is handling the big things, that His word promises He'll handle it. I can't say everything feels easy because it's never easy to process. It's never easy. I feel like I have something to hold on to. I feel like I'm anchored and reminded. I won't like how this will feel for the next day, week, month, whatever. I know that I'm going to get to an end, that Myles is going to get to an end that's a good one. 


Carrie: Yeah. I think that's a good word. We have to remember who our anchor is. We do have those moments where God just shows us something. I think about how your soul just sings, you know? There's those soul-singing moments of yes, Lord, you see me personally in this moment, and you've shown this to me personally. It's so beautiful. 


Sandy: For me, it's the kind of thing when you said your soul sings. I want to tell everybody, do you know what God just did for me? And they're like, yeah, that's so sweet. You don't know.


Carrie: Well, because it's so personal. No one we can't expect others to necessarily understand because it's personal, and it means that much to us.


Sandy: And to him.


Carrie: Kind of along the lines. You and I were just speaking together at the conference in Tennessee with the theme of Beloved with Rising Above. We talked about God's love for us and how hard it is to know and accept that God loves us. Something that you said struck me, and I wrote it down hurriedly in my journal while you spoke of how Adam and Eve lived in perfection, and they still questioned God’s love for them. The devil was planting, right? Seeds of temptation. Why do you think we struggle with this so much? 


Sandy: From that example, I just think it's part of our humanity. It's part of the reason why we need Jesus. I would say they were doing okay until a question came up. Carrie: Adam and Eve were faced with the question

Sandy: Everything with them seemed to be fine, living their best lives with God. Can I just say the fact that they were living naked and unashamed to me speaks volumes? I don't know anybody who has the courage and the freedom in this day and age to feel like they can live with God or anybody else with that kind of vulnerability and transparency. They had it so good, but all it took in their humanity was one question. Did God really say that? That's not true what God said. Just one thing. In their humanity, they fell for it. They didn't think to go ask God about it. There's no record that the two of them even had a conversation about it. Maybe, if they talked about it amongst themselves, somebody would have had the presence of mind to say, maybe we should talk to God, or this is not true. Because it was their humanity, I think we can all stop beating ourselves up when we fall prey to that. Because if they lived in perfection, and they could fall prey to it, what makes us think that we wouldn't? So we can stop pretending that everything is always okay. So that's one. But the second thing, too, is that the enemy showed his hand. The way that he comes for our relationship with the Lord is he questions what God has told us. He questions his word. Did he really say that? He didn't really mean that. Sometimes that's all it takes. 


Carrie: When I think about our listeners, those are the things they're facing. We’ll talk about your new book in a minute, but you talk about this in the book. What kind of God would allow this to happen to a child? All of a sudden, there are these questions and things that are coming up in our minds that cause us to doubt God's love for us. 

He's so sneaky at it. Even for those of us who may have walked with the Lord for a long time, it's still easy to get disoriented with those questions. 


Sandy: He can sound so familiar because I think that I'll speak for myself. Because it's a voice that I feel like I've heard so many times, I can hear it, and it does sound familiar. It speaks to my humanity, making me think this is not a ludicrous question. You really have to fight where the question is leading and actually even look at where the question is leading. If I believe this, then what, and then what, and then what?  Hopefully, to have the kind of relationship with God that's at least open enough to say: what do you have to say about that? I’m feeling some kind of way. This is kind of stinky. What do you have to say about it?


Carrie: Yeah, I loved your point. You mentioned in the book that Eve didn't take her questions to God (from what we can tell). That's what we need to do: take them to the Lord. It is interesting to think about where is this leading? Is it going to lead me farther away, or is it going to lead me closer? Which am I going to choose? 


Sandy: One of the things that I've discovered in this kind of is the importance of community - to have people in your life and to be this for other people in your life. When my mind is being led down a path, it doesn't need to go to have someone you trust and willing to speak truth to you. I have a friend who I had a situation not that long ago where fear just hit me, and it seemed as many times as it's happened, and I know it's not from God; it felt like I had a reason to be afraid. I wasn't calling it fear, but that's what it was. I told her what I was going through, and she immediately said, “Sandy, that sounds like fear. “Who again is the author of fear? Because at this moment, you seem to have forgotten.” We need people in our lives who will do that, and she cuts to the chase. She doesn't tap dance around it. It’s important to have those people in our lives. Fortunately, I have a husband who does that for me. Sometimes it's harder to listen to your husband, but he does that for me. Again, I have this friend; she cuts straight to the chase. I think it's easy for her to do because she knows what I know. She says, “I know you know this. Remember what you know.” 


Carrie: I think that's one of the themes of just our conversation is in our humanity, we so easily forget, and we have to go back to what we know and what God has told us about himself, what he's shown us through scripture, what he’s shown us in our own life. Will you tell our listeners a bit about your new book, When Dreams Are Disrupted, beautiful and truth-telling? I'm so excited for it to be out in the world.


Sandy: Thank you. The Lord told me that he wanted me to write a book. I said, okay, but it took me a while to figure out what I wanted it to be about. He said he wanted me to write a book that would encourage other special needs parents. My first thought was (I don't know if this is my thought or the enemy's thoughts) Lord, you know, there's a whole lot of books out there. Good books that I've read that cover that. Because I am in my own target audience, and you know this because of your book, you're in your target. One of the things I've learned is that there are so many different stories out there that I know that my personal story will not resonate with everyone (it may not resonate with a lot of people), just because everybody's experience is so different. What I tried to do with the book is use my story as an opportunity to showcase God, how he taught me - Him and how he works through my journey through special needs. He took me from the anger and thinking that because I had been doing all the right Christian things that, I had the right to expect that he would protect my family from hurt and harm. He took me from that to the point where I realized (and I can see myself) how faithful he has been from start to finish, how he has proven his love over and over. The way he does things really will never look like I expect or even want. But at the back end of his work, there is a joy that I cannot explain. I’ve learned that (my family laughs at me about this) I'm always telling God, well, you could do it this way. I would like you to do it this way. I have ideas about how we can approach this. He took his time with me, and he was like, I'm not changing. I, God, am not going to change. But I will stay with you as long as it takes for you to see me for who I am and let me be me in your life. The biggest thing I learned is that God is a God of process. He allows things. He does things with a purpose in mind, even the hard things. I believe now that the hard things that he has allowed are because he knows that those are the things that will get me from where I am to where he wants me to be. One of the quotes I put in the book, and then I shared at the retreat we were both at, is that love is helping another person to become everything they were created to be. I think that is God's intention with us. He knows the end. He knows who He created us to be, and who we are in His eyes. He orchestrated our life circumstances and all the things to help us be that person. This is Sandy now. God didn't tell me this, but I think sometimes at least for me, in my humanity that the best way for him to get my attention was through some hard things. Because look, Carrie, I think I can do some things pretty good by myself. 


Carrie: Yes. I think we all think that. I think that's just human nature.


Sandy: It’s our humanity, right? He put me in situations, particularly at the very beginning when my son was in the hospital, where there was nothing that I could do.

There was nothing. He showed up in ways that were miraculous. 


Carrie: Could you tell one of those stories?


Sandy: All right, and so one of the issues that my son had was issues with his kidneys. He had developed some kind of kidney infection or something, and all the medication that they were trying wasn't working. Then there's this new medicine that they wanted to try. Every single doctor on every shift, every doctor that came in our room, was pushing for this medication. I'm going to say in the providence of God; he made sure that my mom gave us a drug reference guide because we didn't have one. She just said, here, you guys might need this. We looked the drug up, and it said that the drug kills kids. It didn't say it might. It said it has been proven to kill children. So, armed with that information, we went to the doctors. It says it kills kids. They still recommended it. They said, but that doesn't happen often. I don't understand that. It's listed here, right? Finally, my son's nephrologist, his kidney doctor, came running down the hall one morning screaming, don't give him the drug; it kills kids. Don't give him the drug; it kills kids. He had left a meeting with other doctors, and there was a brand new doctor on the case who told them you can't give that drug to that kid because it kills kids. The doctor had just started working at the hospital. The doctor had just moved into the house next door. He was our brand new next-door neighbor. We hadn't met him yet, and God put him there at the right place. From that point on, they stopped asking us. To me, that's miraculous. That is what a coincidence. It's not a coincidence. Through the book, God also showed us how much He loves us. You read the chapter about my daughters there. I have two daughters who do not have special needs. 

I cried from start to finish in writing that chapter because it was the first time that the Lord showed me the impact of my son's illness on my daughters from their vantage point. Carrie, I am a good mother, but I missed it. My daughters were four years old and 13 months old when Myles got sick. For whatever reason, they thought that they would understand that when their brother got home, looking and behaving nothing like he had the last time they saw him, they would understand that he needed more support, that they would just get it. How would they get that? But it took writing that chapter for God to kind of download for me what the experience was like from their vantage point. I gotta tell you, it broke my heart. But they finally both agreed to read it, and in tears, they were able to say, yes. Yes, that is true. Finally, after all these years, feeling validated. Who but God can do that? Let me say, too, for those who are listening and who may never read the book, that God also showed me how He redeemed the brokenness in their lives. They're both doing so well, and the ways that their lives have been marked by special needs have caused them to be such courageous and compassionate young women.


Carrie: I think sometimes the number one question I get when speaking is, about my other kids? Am I going to mess them up? I think the answer is yes, we are. We are human, and you can say you'll do your best. But the truth is we are sinners, can't always be attuned to their needs, and can't always be present to help them regulate their emotions. Adam Young talks about the Big Six things kids need from their parents. But when you're in these stressful parenting situations, sometimes I can barely be present in it for myself, let alone having my children around me. I think one of the things I'm hearing you say is they're in God's hands.

I think if we feel conviction, we need to apologize to them. We need to be present with them. We need to love them the best we can and have the community around us help us the best we can. It's in God's hands. He loves them more than we do. 


Sandy: He knows what they need more than we do. You know, I mean, from the outside looking in. I did the things; they had the parties, they did the events. I helped with the homework. I went to the school events, but what I didn't know to tend to was their hearts. The reality is, Carrie, for all of us as parents, whether we have children with special needs or not. Look, we have not been this way before. Right? Right? Thinking, I got this; I know how to do it. No, we don't. No, we don't. We learn as we go. As you said, we trust God in the process. I believed before God showed me all this stuff. I absolutely believe even more so now that God fills the gaps that we leave. If we intentionally give our kids to Him and keep them in prayer, the gaps that we leave behind, He will find a way to be filled. I gotta believe that that's part of His work, helping them to work out their salvation. 



Carrie: I think he specializes in that, and that’s so beautiful. I have one last question. In your book, you related some of that deep spiritual wrestling you had during those early years. You were talking about wanting to believe and the struggle that we have when things don't look the way we thought they would look and our dreams are disrupted, which is a beautiful, perfect name for the book. It said, here's the thing I continue to learn. His ways don't have to be subject to our understanding to be worthy of our trust. Can you expand on that a little bit? It's powerful. It packs a punch because we feel like we have to grasp it in order to trust him.


Sandy: That's sometimes where the enemy gets us because it doesn't make sense. He can convince us that either God didn't say it, he didn't mean that or you don't have to do that. But nowhere in scripture does it say to do this because you understand there are certain things that we will not understand. The Perspective that God has because he knows the end from the beginning, because he knows where every decision that we make will lead because he knows what's around the next corner. There's a perspective that he has that we don't. We just don't have. That's what faith is -to trust God. You have a track record with me of getting it right, and so I'm going to go with you on this one. At the end of the day, He is responsible for the consequences of the things that he asks us to do. Once we obey him, once we do the things, then we can put up our hands and say, now, God, it is on you. The outcome belongs to you. I mean, there is even some freedom in that, I think. 


Again, we think so highly of ourselves to think that we serve a God, the Creator of the universe, the King of Kings and the Lord of Lords, that we even have the capacity to understand everything He does - the way He thinks. I mean, it's almost ridiculous. Why would you serve a God where you understand every single thing? Why do you need a God that you understand? You don't need Him. Every day, when I have hard things (as I mentioned before, we have some hard things about Myles), I choose to believe God. You know what, Lord, I'm not quite sure what this is about. I don't understand it, but I'm going to try. I'm choosing to trust you anyway.


Carrie: Is there anything else that God's laying on your heart you would like to share with our listeners? 


Sandy: You and I have discussed it as two women who have experienced this - an intimate relationship with the Lord.  It's so important to me for those of us who call ourselves followers of Christ to have intimate relationships with Him. To know about Him is nice. To know that because I've said yes to Jesus, I'm going to be in heaven is nice, but that's not enough for the realities of what this life will throw at us. It's not enough, if we don't have the kind of relationship where God has permission to speak into our lives anytime he wants to, where he has permission to redirect, where we feel comfortable with him because we know he knows anyway. 

Those hard conversations, God, where were you? That kind of relationship with him is so vitally important. There can't be anything that's so urgent in our lives that keeps us from the place of developing that kind of relationship with him. It's gotta be priority number one. Otherwise, we fail. I hate to say that, but it's true. You and I can sit here and say all the things we've said, shared all the things we've shared because we know him. We see him. We see that he sees us. We're doing our best to be naked and unashamed with God. It’s so important. 


Carrie: To our listeners (you addressed this in your book, too), sometimes when you're in an ICU stay, it's just that morsel of bread, that meditation on scripture. We can't discount the power of the Holy Spirit. The Bible says his words will not return void. I'm in a time of my life where I'm trying to read through the Bible in a year, and God's teaching me so much. Some days, it's a rote thing that I'm just trying to be disciplined about daily. Sometimes, it's really sweet and in-depth, and God's showing me amazing things, but still, that pursuit of intimacy with God should be the number one priority no matter what stage you're in and whether it looks like a scripture in your ear driving to the hospital or a breath prayer while your child's having a meltdown in the grocery store. Continue to look to him. It's so important. mean, 


Sandy: That's real relationship, what you just described. is. That's what relationship looks like. It's not always, you know, fireworks. 


Carrie: It's persistence, and faithfulness, and intentionality. 


Sandy: Commitment. That's what I hope for every person that's listening and for wherever we are. I always desire to go deeper because I feel like there's always more to know, always more that he wants to show me about himself and me. 


Carrie: Thank you so much for this conversation. Can you tell our listeners where they can find you on your website and social media and where they can find your book?


Sandy: My website is www.undisabledlives.org. My book is now on Amazon, and I just found out Barnes and Noble,, and will be in other online retailers at some point. I'm on Instagram @undisabled_lives.


Carrie: We'll have all those links in our show notes, so don't feel you must scribble to write that down if you're listening. Thank you so much for sharing your heart, your wisdom, and your love. I learned so much from you and connected with you on this deep level of understanding. We thought our lives were going to be one way. God had a different plan, what He's just continuing to teach us, and how He's drawing us close to His heart.