The Life Challenges Podcast
The Life Challenges Podcast
Unseen Strengths: Parenting Kids with Special Needs with Lindy Spencer
What if embracing life’s unexpected challenges could lead to profound personal growth and resilience? Our latest episode introduces you to Lindy Spencer, who opens up about her transformative journey of raising a daughter with spina bifida. Her story offers a beacon of hope and encouragement for families navigating similar paths, shining a light on the triumphs and complexities of parenting a child with special needs.
We examine the vital role that faith and community played in supporting Lindy and her husband during challenging times. With limited resources in the pre-digital age, they relied heavily on their church community and other families in similar situations for guidance and support, emphasizing the importance of empathy and understanding from others regarding their daughter Nicole’s limitations. As she grew, the family adapted to her evolving needs, navigating the medical system and balancing her unique requirements with social activities, all while fostering an environment of inclusivity and support.
As Nicole transitioned into adulthood, the journey of independence brought new challenges and opportunities. We explore how the family, with the help of a supportive network, renovated an accessible home to suit her needs, allowing Nicole to share her space with a roommate and gain greater independence. Throughout these transitions, Lindy reflects on the power of faith, resilience, and perpetual parenting, celebrating small victories while acknowledging the realities of living with a disability. Tune in to hear Lindy's inspirational story, enriched by love, strength, and an unyielding faith that underscores the value and worth of every individual.
God, doubt, and proof walk into a podcast... it goes better than you’d expect!
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On today's episode have meant this opening where the spinal cord came out of the canal and because she needed surgery and to send her home with us just bandaging and let infection set in and it would lead to death. Thankfully, we were grounded in our faith and like didn't even consider that. Well, of course we'd want to have her treated and so she had a major surgery the very next morning after she was born.
Paul Snamiska:Welcome to the Life Challenges podcast from Christian Life Resources. People today face many opportunities and struggles when it comes to issues of life and death, marriage and family, health and science. We're here to bring a fresh biblical perspective to these issues and more. Join us now for Life Challenges.
Christa Potratz:Hi and welcome back. I'm Krista Potratz and I'm here today with Pastor Jeff Samuelson and today we have a special guest with us. We have Lindy Spencer. So welcome, lindy. We really appreciate having you on the podcast today.
Christa Potratz:Lindy is so kind to come on today and really share with us her story and her experience, and we specifically really wanted to touch on the topic of talking about raising a child with special needs and this topic for all of our listeners too. I think a lot of people maybe personally don't have a story with raising somebody in that situation, but maybe know somebody. I mean it can touch a lot of different people too, and so we really just find, you know, having people on that can share their story just is really beneficial to a lot of people and a lot of our listeners as well. So thank you so much for coming on, lindy and I think you know I'll just throw the ball to your court here and if you can share just a little bit of your background and your story with us, oh sure, well, I'm happy to be here and, yeah, my husband and I are high school sweethearts early in our marriage.
Lindy Spencer:Then, unfortunately, we had a miscarriage first, and then after that we were pregnant with our daughter, and she's the one who has special needs, and she was born with spina bifida many years ago actually, she's an adult now, and so we had quite a journey. We didn't have any experience with spina bifida or really with a major disability in our family, so we ended up with lots of life issues that we dealt with, both in her initial treatment and then eventually, our family had secondary infertility and another miscarriage, and that led us to adoption also, which was always in my heart. So we have one daughter with spina bifida, and then our son is 10 years younger and he joined us through adoption.
Christa Potratz:Oh, wow, well, thank you for sharing that. Yeah, you know, it really does sound like you have experience here with the areas of life challenges and the different things that we talk about here. On the podcast you mentioned too, just kind of at the beginning with treatment with your daughter when she was younger. Can you maybe kind of expand a little bit on that and even to like just maybe when you realized that she had spina bifida and that process?
Lindy Spencer:This was, feels like quite a while ago. It was back in the early 1980s and we were both young and newly married and she was born and unfortunately we didn't know about the spina bifida until on the delivery, until she was born. Nowadays they have so much more testing and things available that you can plan medically and as a family also. But back then she was born, my doctor was gone and so the fill-in doctor. She was actually born breech, which added to problems, and there too these days, if they know you're going to be delivering a child with spina bifida, it's kind of recommended to do a C-section so the opening in the back doesn't go through all the trauma of the birth canal. But there again, we were back in the 80s. So she was born and we hadn't heard of spina bifida. They used the word myelomeningocele. That sounded very foreign too.
Lindy Spencer:She was transferred immediately to a children's hospital and then the question came to us. I'm trying to think if it was, we had her baptized right away in the hospital. We brought our pastor there and I think it was that night or else top of the next morning where the medical people listed all the problems that she likely would have. Only some of those came true and then said do you want her to be treated or not? A non-treatment would have meant this opening where the spinal cord came out of the canal because she needed surgery, and to send her home with us just bandaging and let infection set in, and it would lead to death. Thankfully, we were grounded in our faith and didn't even consider that. Well, of course we'd want to have her treated and so she had a major surgery the very next morning after she was born and we went from there. So it was having to make this big decision with a pretty negative outlook.
Christa Potratz:Wow, that's a lot right at the beginning there too, yeah, how did you cope with that?
Jeff Samelson:You were a very young couple. What were the things that you found helpful or perhaps unhelpful about dealing with that? You were a very young couple. What were the things that?
Lindy Spencer:you found helpful or perhaps unhelpful about dealing with that. You know it really helped that we were grounded in our faith. I was actually teaching in a Lutheran elementary school at the time and I had met with the pastor talking about baptism and that kind of information, and so our church and our faith were really helpful. We had that. Family is helpful, but they also kind of are struggling at the time too to understand why did this happen, and so it can be a mixed experience. But yeah, I would say that our faith was really what got us through because it was definitely overwhelming. Really what got us through because it was definitely overwhelming. And then connecting with other families and the support, the social worker who connected us with other families, and all of a sudden it became a little bit more normalized and we could ask just all the questions we needed to.
Christa Potratz:Once you got your daughter home and were starting to raise her, what were some of the challenges that you found as you were raising her?
Lindy Spencer:Probably just navigating the whole medical system was one of them. We were new to that and young and even realizing. I remember once we went to a specialist it happened to be urology and they gave an opinion about her needs and then we consulted another one and we ended up consulting three different urologists so specialists and they all had three somewhat different suggestions. And these are the specialists you know. And then they said, well, kind of what do you want to do? And I'm like, oh, so it's times like that where you reach out to other families, read the resources were very helpful being connected to a support system. There was a lot of information out on spina bifida so we could check into that and then just pray about it and just try to make the best decision and then just pray about it and just try to make the best decision.
Christa Potratz:Yeah, you know, when you mentioned to like reading things or even connecting with other families, I mean right away, like my mind just goes to our online world, Like, oh, yeah, you know. Yeah, you just, you know, joined a Facebook group, like with the families in the area, or you got all this information at your fingertips. I mean, I'm realizing that that's not probably what it was like for you at all.
Lindy Spencer:Correct. Yes, and maybe you can help me remember when the internet really got going, but back then it was. We didn't have texting, you know, it was pick up the phone or grab a book. That was about it, yeah.
Jeff Samelson:Yeah, I was in high school in the 80s, so yeah, that's correct, we didn't have any of those things.
Lindy Spencer:Whole different world now.
Christa Potratz:As you were raising your daughter, and everything too. I mean, you talk just about how great that community was of people that knew what you were going through and that would support you. But what were maybe some challenges that you saw, maybe other people or you know just something, maybe that you wished that people understood more about your situation as you were raising your daughter?
Lindy Spencer:understood more about your situation as you were raising your daughter. You know, sometimes as a family we couldn't like join in an activity or go to an event. And it wasn't because we didn't want to go or we're saying no to the people. It was looking at our family's needs and her needs specifically and can this work. And that can be a little bit challenging, it can be a little sad sometimes too, but you need to prioritize your needs and then see how they can fit into the situation, and so trying to explain that to others would be one thing that can be a little bit difficult. Or it might seem like she's maybe not wanting to engage and it's probably more so due to a limitation that she is challenged to initiate conversation. So it's not that she's antisocial or doesn't want to join in, it's just more of the disability or some limitations. And so the importance of others kind of reaching out to her makes a difference of others. Kind of reaching out to her makes a difference.
Christa Potratz:What kind of maybe effect did it have on your day-to-day, your typical day as a family?
Lindy Spencer:You know it's a little bit hard to know because she was our first child so we couldn't know what family life was like, apart from my husband and I before that. But I would say we are probably needed to be a little bit more structured because there's a timing of certain either I don't know medications or bathroom timing or certain different needs that she'd have, and a little bit more of being planned and being intentional, making those phone calls, setting up appointments. We kind of live by the calendar a little bit more and just to make sure that everybody's needs were met. So it's not maybe quite as flexible as before as one would be.
Jeff Samelson:What would her experience have been like growing up then?
Lindy Spencer:You know, that was the only way Nicole knew that things were. I think of it when someone is able-bodied and then they have an accident or some kind of trauma and they lose function, and how difficult that is. But for Nicole she never did walk without assistance and so she wheeled everywhere and that was her life and she was just. She is described as the most pleasant person. God has just blessed her with a great spirit, and so what's lacking in toes that don't wiggle, just her spirit makes up for it, and she's already been honored by one of the nurses as patient of the year, kind of thing, and, you know, even in the hospital. So we just feel very blessed. I've learned from her and that kind of spirit, but otherwise she, you know, I would do daycare, home daycare, and she'd have people to play with.
Lindy Spencer:And we have a little booklet that shows two kids going to the ice cream store and the boy is climbing up the steps and right beside it is a ramp, and so the girl is wheeling up the ramp.
Lindy Spencer:So you know, still wanting to do the same things that everybody else does, but maybe having to do it in a different way. In fact, every year I'd go in and talk to her class second or third day of school, either with the school nurse or the school guidance counselor, and we'd let the kids have a chance. We'd explain about disabilities and what's hard for everybody and what are you good at, and they could ask their questions and you know that was always interesting. They'd say, well, how does she swim with her wheelchair? They picture Nicole in a chair and so that idea it's kind of like glasses that you put on and you need to wear, but then you know you don't swim with them and you don't go to bed with your wheelchair and she could pop a wheelie and you know, just so they got to understand. And then it really seemed like that helped friendship and okay, now let's just go play. You know, because they got it, yeah.
Jeff Samelson:That sounds really wise that you did that.
Christa Potratz:Yeah, thank you. Yeah, and the questions that you mentioned too, with the kids. I mean I can really see that I have some young children right now too, and I mean they just genuinely want to know how that all works. It's just, it comes from a very sincere place.
Lindy Spencer:Yeah, and once you address that fear of the unknown, then it just makes everything easier and they can just go play again. Yeah.
Christa Potratz:You mentioned, too, that you adopted your son 10 years after Nicole was born. How did that change the family dynamic? Was it different?
Lindy Spencer:after that we love him to bits and he was a very energetic guy and so we felt like we had the whole gamut. I always wanted a kind of a big family and I felt like I got a little bit of everything with my two, you know.
Lindy Spencer:Lord answered that just in a different way. And so I guess the benefit and the need for two parents really showed up, because often I'd be helping Nicole and addressing some of her needs and my husband would be with our son, playing and interacting with him, or I'd try to make sure he could still have friends over and do all the typical things. And so we were pretty intentional that he was friends with our daughter but not having to do any caregiving. I didn't think that that was a good idea. And yet he got to do some cool things that maybe like we would go and stay at the Ronald McDonald House when she'd have medical surgeries and boy, that was the coolest place to play and had a playroom, an arcade room and and so it was a whole family adventure. Try to make the best of all the situations.
Christa Potratz:Yeah, you know, when you were talking to about just you mentioned, like your, your husband and how you guys were doing that together too. I mean that really stood out to me. Yesterday I was with all four of my children at the dentist office and the receptionist was like, wow, you know, you're, this is. This is basically like this is crazy, and I mean. To which I replied you know, I mean I really am very blessed. I do not do this on my own and I mean my husband really helps quite a bit and has a great job to where he is able to be home in the evenings and on weekends and that type of thing too. And so, you know, I just love it if you'd maybe speak a little bit more to how you guys really worked together in this area and with your family.
Lindy Spencer:You know that basic communication is so important. When I often would take Nicole to her doctor appointments and he would stay at work so he didn't have to take vacation days. Sometimes that was a good idea I don't know if it was always the best idea, but that's what we did. But I'd take notes I'm a huge note taker and then when we got home I would share the notes and we were living in small town, northern Wisconsin, and so we would have to drive a number of hours to get to the doctor appointment and stay at Ronald McDonald or with a family. So sharing those notes and making sure everybody was aware and doing what we could that way.
Lindy Spencer:But I must say support systems were really important too. Besides the two of us, we were connected actively with the Spina Bifida group and so meeting other families and you just didn't feel alone and we could sometimes, you know, commiserate about the struggles or we could say, hey, you know, I got this great book, or we found this great therapy center and whatever it was could share together, and that was very, very helpful. I have a just. I really love support groups.
Christa Potratz:Yeah, no, that sounds really neat and I can definitely see the benefit with that. Besides support groups, too, were there any other resources that you found really helpful?
Lindy Spencer:Back then I hope I can say it on here I listened to Focus on the Family. It had a lot of parenting type things and parenting kids with special needs. So that was very helpful because you could be at home and doing your thing. Or I mentioned the books conferences either one day, that kind of thing where you'd all come together and have a number of the professionals speaking throughout the day and taking those notes and learning together, and then the people you were sitting with who also were parenting kids with special needs, who also were parenting kids with special needs, learning and sharing with them too. So support in various ways, you know, in that networking.
Christa Potratz:And then certainly our church and our pastors were helpful too, supportive and encouraging. What would you say has been the most rewarding part of being a parent to a child with special needs? Maybe that?
Lindy Spencer:you learn to treasure the things that are really important and it leads you to dig deeper, to look deeper. We don't have again toes that wiggle and certain things that other parents would kind of get excited about, but we can get very excited when that first rolling over happens, not at the time that maybe other kids rolled over, but when it does happen or a partial roll, you just celebrate and probably celebrate maybe even a little bit more because it took a little work to get there. It drove me into a deeper love too, to really appreciate her, and you find an inner strength, and I would say God-given strength that you really didn't know you had.
Jeff Samelson:Yeah, well, one of the thoughts that strikes me as you're talking about that, the idea of maybe a special kind of love, or even more love, in a way. And it's actually a good illustration for us of God's love for us, because we make his life very difficult, so to speak, and yet he loves us all the more. And it's helpful sometimes to realize that he doesn't love us because we're so good, because we're so wonderful and perfect. He loves us despite that. And it's just a thought that crossed my mind, thank you.
Lindy Spencer:Yeah, yeah, and certainly we needed, or we learned, a deeper dependence on him too. I remember one time, as she was maybe five, six, and Nicole's had numerous surgeries through the years that go with a long spina bifida and they were actually carrying her through those doors that say no admittance for us as parents into a surgery and really hard on a mom. And I had brought my Bible along and I didn't even know where to look and I just prayed through the tears and said, lord, just lead me to something and, you know, open the book. And he certainly did. But you're just, you're weak and depend on strength.
Christa Potratz:You're just. You're weak and depend on strength. Your daughter is now an adult, but what would your advice be to people that are maybe just starting out on this journey? So maybe you just got a diagnosis and maybe now it is an in utero diagnosis. With something like this what would your advice be to a young couple?
Lindy Spencer:Probably. Just remember it's a she, he is a child first, and disability second, and even the language that we use, not a disabled child but a child with a disability. And remember that's first and foremost the most important. You're not alone. It's okay to ask for help and it's a good thing. It's actually, I think, a sign of strength and to reach out, not compare. You just kind of get stuck then if you compare to what others are doing at that same age, but just enjoy the child for who they are age, but just enjoy the child for who they are.
Christa Potratz:You have mentioned now with your child being an adult what is life like for her now. Can you describe a little bit about the situation she's in today?
Lindy Spencer:We're so proud of her and she is so happy to be where she's at. She's a full-time wheelchair user, doesn't stand at all and she is now in a house moved out. She was happy to move out of her family home, from our home. She's got a strong sense of independence and so we found a home that was advertised as one of Wauwatosa's earliest accessible homes. It had been built for a veteran coming back from World War II, so it had a lot of accessible features already in it. We did renovation and so we followed the pattern of some others there.
Lindy Spencer:Again, our networking. There was another family similar situation. We learned a lot from them. There was another family similar situation. We learned a lot from them. So Nicole has the personal helpers come and go for whatever she might need if it's cooking assistance or personal care type thing, and we've got safeties put into place. And she has a roommate. Another young lady who wanted to move out from her family home too has different needs than Nicole's, but it's just been a wonderful thing and she's so happy to be at her place.
Jeff Samelson:Sounds great.
Lindy Spencer:For everybody.
Christa Potratz:Really, you know it's, it's really what a normal type thing you know, yeah, was that a big adjustment for you to do?
Lindy Spencer:that you know we were all pretty much ready. So it took a lot of things to get in place. It took us two years from the date of acquiring the house until it was fully ready and it was during COVID. So she moved in and her caregivers would come with their masks on and you know we just did it and yeah, there was a lot to get in place. But again, masks on, and you know we just did it and yeah, there was a lot to get in place, but again it would have been overwhelming had we not had some others to follow their pattern. So the importance of networking really came through.
Jeff Samelson:It sounds like you've had a lot of ups, you know, with your. You know your whole experience with this. I'm certain there were plenty of downs, with bad days and difficult times and hard questions to answer. You mentioned when she was going into surgery and went through those doors and things like that, and you mentioned the most important thing, obviously relying on the Lord. Were there any more practical things that you would say were really helpful for you in managing those ups and downs of life?
Lindy Spencer:You know, along with celebrating any of the small steps, it's also grieving the losses. You know there isn't that time where she can run in the race like others run and so to give yourself permission to grieve those losses, there were certainly plenty of tears, to grieve those losses. There were certainly plenty of tears even that she kind of had to go to school at age three. Then the birth to three program and away she went on the little mini bus and you know, you kind of felt like it wasn't as much a choice, she just needed it and it was a good program. But I put her on the bus and Nicole being being independent and she wasn't speaking a lot, she said mom, and pointed out the window like I needed to get off the bus to go to school.
Lindy Spencer:So I went in the house. She went off. I went in the house, had a good cry, called a friend, not even a friend with a child with a disability, but just a friend to talk it through and, you know, a shoulder to cry on Getting counseling as needed. I think that's always who doesn't need support of that kind of thing in their life and I think it's a helpful tool, christian counseling specifically.
Christa Potratz:You've mentioned really like this whole talk has been. It's been sprinkled in, but you know just again maybe, where did you really draw your strength in your faith with everything in life, whether it is encouraging Bible passages or just things, that truths of God that you really focused on over the years. What are just some places of strength that you went to in the Lord during your journey?
Lindy Spencer:I remember going to, I was teaching Sunday school and I went to a conference and I was talking with the pastor and kind of feeling a little blue, and you know that question came up about why me? And this pastor said, well, why not you? And at first it was like, oh, that ouch a little bit, you know, but he didn't do it that way, you know it was. And then he went on to say, but he didn't move that way. And then he went on to say, well, look, you have advocated for her and loved her and met her needs, and what if she would have gone to another home that wasn't doing that for her? And so in that case it was the pastor just really encouraging me to kind of get out of that low thinking mode and to reframe how I thought about it. So that was very helpful.
Lindy Spencer:I have one verse that I had just thought of recently from Lamentations and kind of thinking of how God allows this. But it wasn't the initial creation in the Garden of Eden. You know, the world is just not perfect and we we have sin and we have problems and struggles, and yet he works through it and again has brought us to this point of like a deeper love and learning to be assertive that I wasn't before, and treasuring the small things and so just seeing how God can work through those things for everyone's benefit.
Jeff Samelson:Your mention of creation and Eden and perfection just made me think kind of toward the other end of things, that all of us have things that we're looking forward to about heaven, about the resurrection. I imagine you have a slightly different perspective on that in terms of what it's going to be like for you at the resurrection, seeing Nicole.
Lindy Spencer:You think of leaping for joy and dancing and just all those kind of movements that go with happiness and that she'll be able to do, able to do. We get a lot of support from Johnny Erickson, tata too, and all that she's done in her ministry and how many years in the wheelchair and the lessons on suffering, and you know she talks too about just walking and praising the Lord, and so that whole image just brings a lot of happiness.
Christa Potratz:Yeah, Well, you know, as we kind of close out this episode and wrap things up a little bit, you know, our podcast here is called Life Challenges and really what we always, you know, want to try to hit on is that, even though there are these challenging moments in life, God is walking through it all the time with us and also just like that importance of life too. And so is there just anything you know to just let our listeners know, or would you like them to know, on just the importance of life, the importance of your daughter's life, your own life or just life in general?
Lindy Spencer:she was born and just the offer to not be treated. After that I ended up serving for a brief time on the panel. I think we met in Madison developing some of the baby dough laws where, like back then, there was a child with Down syndrome that wasn't treated for their heart defect and allowed to die just because of their disability, and just helping to show that it's still a person first and all the blessings that come from that. And yes, the disability can be very challenging and it goes on. You become a perpetual parent, as one of her doctors said. Parenting goes on, just in a different format, but it is the person first and the joys and creation by God that you can just love and find something deep within an inner strength that you didn't know you had.
Christa Potratz:Well, thank you so much, Lindy. We really appreciate you taking the time to talk with us today. It was really wonderful to have you on the podcast. Thank you so much, and we thank all of our listeners, too, for joining us, and if you have any questions on this topic or any others, you can reach us at lifechallengesus, and we look forward to having you back next time. Thanks a lot, bye.
Paul Snamiska:Thank you for joining us for this episode of the Life Challenges podcast from Christian Life Resources. Please consider subscribing to this podcast, giving us a review wherever you access it and sharing it with friends. We're sure you have questions on today's topic or other life issues. Our goal is to help you through these tough topics and we want you to know we're here to help. You can submit your questions, as well as comments or suggestions for future episodes, at lifechallengesus or email us at podcast at christianliferesourcescom. In addition to the podcasts, we include other valuable information at lifechallengesus, so be sure to check it out. For more about our parent organization, please visit christianliferesourcescom. May God give you wisdom, love, strength and peace in Christ for every life challenge.
