Today Ellie Sanazaro, the author of the book Image Bearer, shares her story of misdiagnosis and adoption. She encourages us to remember that the value of our children with special needs depends NOT on what they do, but rather how they have been created fearfully, wonderfully, masterfully, and purposefully by God.
June 8, 2021, Ep. 43
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Today Ellie Sanazaro, the author of the book Image Bearer, shares her story of misdiagnosis and adoption. She encourages us to remember that the value of our children with special needs depends NOT on what they do, but rather how they have been created fearfully, wonderfully, masterfully, and purposefully by God.
June 8, 2021, Ep. 43
Timestamps & Key Topics:
Episode Links & Resources
If you enjoyed our podcast, please...
Carrie M Holt 0:21
Welcome to Take Heart, where our goal is to give you hope, offer insight and encouragement so you can flourish in your journey as a special needs mom. Each week, Sara, Amy and Carrie will explore a theme, share an inspiring story, practical tips and encouragement for you to use every day. Thank you for joining us today. Today in our podcast, our guest is Ellie Sanazaro. She is a wife and a mother of three, and the author of a new beautiful children's book just released called Image Bearer. She is a former first grade teacher and children's ministry director. She says, "God totally changed her heart when her daughter was born without the chromosomal disorder they were told to expect. God used this to lead their family down the path of Down Syndrome adoption." So I'm here today with Ellie Sanazaro. So first of all, Could you just tell us a little bit about yourself and your family and your special needs journey?
Ellie Sanazaro 1:45
Yes, I am Ellie, Sanazaro. I am a mom to three kids. I've got my daughter, Rosalie who's four, my daughter, Leoni, who's two, almost three, and then my son, Finn, who is 18 months. He is my kiddo who has special needs, he actually has Down Syndrome. We were kind of thrust into the special needs community in a not super conventional way, I guess I would say. During my first pregnancy, we were given some prenatal test results that said my daughter would be born with a chromosomal disorder. We kind of spent six months of pregnancy preparing for that, though we didn't have an official diagnosis. That's what we were told. That the test had identified an extra chromosome. After she was born, we found out the test had been wrong. We kind of thought we were going to be parenting a child with special needs, and then ended up not. God actually used that experience to lead us down the road of special needs adoption. Finn, our youngest, we adopted him with the help of the national Down Syndrome Adoption Network. That's how we, I guess, officially became part of the special needs community. About three years after Rosalie was born, so we had Leoni in between those two and that's pretty much it.
Carrie M Holt 3:08
Yeah, that's a really awesome story. I love that. So I had a prenatal diagnosis, too. You just think about all those babies who don't make it to birth. You just don't know for sure sometimes when you're coming into a situation. How would you say that your faith has grown as a result of your journey? I know, you said that it led you down the road of okay, let's adopt a child with Down Syndrome. Our mission here at Take Heart is for our listeners to know hope, joy and connection. How do you feel like God just brought that about in your heart to decide to adopt a child with needs?
Ellie Sanazaro 3:58
I feel like the whole journey affected my faith in God and a lot of different ways. I think with the pregnancy, expecting to have a child with a disability, my husband and I were really blindsided by that. Initially, there was so much sorrow and grief. Along with that, really feeling assured by what we'd read in Scripture that God had a plan and a purpose for us and for our daughter. I'd say we lived in that tension for our entire pregnancy of feeling sorrowful that she was already impacted in this way even before she was born, but also feeling the sense of like calling and purpose and the providence that God had over us. I'd say it started there, just living in that tension, and God increased our trust in him for sure, and also kind of revealed to us that we weren't as in control of our lives as we really thought we were. We really learned to rely on him during that time. I'd say, one of the biggest changes was just the way I personally view human worth, and where someone gets their value. I am the typical first born, overachiever, perfectionist, that kind of person. All my life, the way that I have looked for value and worth has always been through my abilities and my achievements. I feel like over the past five years, starting with Rosalie's test results, God has just kind of been stripping that away from me, and showing me that worth can only be found in him. So that's been a really big change. I know you mentioned joy, I feel like the third thing is with Rosalie, there was so much sorrow with the news of her having this chromosomal disorder. With adopting Finn, I'd say, we haven't had that same sorrow. There's just been so much joy. We are able to love him exactly, as God created him and see the value that he has just because he was created and loved by God. We didn't feel those feelings during our first pregnancy. I feel like that's a way that God shows how much he's changed us through this process. I feel like there's a million different ways that he's worked in us over the past several years with this journey.
Carrie M Holt 6:39
That's so true. Just like you talked about holding that tension, I remember feeling that also, being pregnant, because I had a prenatal diagnosis with our son, Toby also, just that tension of joy and sorrow at the same time and trust in sorrow that you can have both. It's interesting that you said that, because today, tonight, even my son asked me, he's 14 now. He's facing a really big surgery in May. He said to me, "Mom, can I know that God's with me, but still have fear about the surgery? I said, "Oh, yeah, dude, definitely." I think it's hard for us adults to learn that. I'm hoping that maybe he can learn that now as a child, or as a teenager. What's one thing about Finn, or your journey that has given you like, true joy? I know, you mentioned how you felt about facing your adoption with him. I had a friend that adopted, and she called it being paper pregnant, waiting? What are some aspects that you have found joy in your journey of being a special needs mom?
Ellie Sanazaro 8:00
Yeah, I think the biggest one that I didn't expect is, when you have a child with special needs, who maybe has some delays, there are more and more opportunities to celebrate than maybe with a typical child. For my girls, there were kind of the big milestones, like they crawled, and then they walked and, you know, then maybe they like, ran. There weren't the constant opportunities to celebrate. It was like, there were these big milestones, and there weren't so many of them. With Finn, he has to work so much harder for every little inch, and so we call them inch stones, the tiny milestones that happen between milestones. Whereas with our girls, we were so excited when they crawled and walked. We didn't even think to notice when they reached for something for the first time. You just don't notice stuff like that. With Finn, we had to work so hard to help him learn to reach that when he did it, there was so much joy and so much celebration. It's not something I ever expected. I do feel like because things move a little bit slower, we're more aware of just the growth and how God is working in Finn and helping him move forward. I do feel like there's a lot of extra opportunities to celebrate.
Carrie M Holt 9:27
That's so good. I can remember, my son had a feeding tube for the longest time and the first time I bought baby food for him it was just this joyous occasion of celebration. I can relate to that in many ways. I think our listeners will too. I love how you said the opportunities to celebrate. I think often a special needs mom, sometimes we can focus so much on, like you said the milestones, even the inch stones that they're not reaching.
Ellie Sanazaro 9:56
It can take a really long time.
Carrie M Holt 9:47
It's so important for us to focus on those little things. So that's great. What is one piece of encouragement that you would give to our listeners? Maybe we have some listeners, who have thought about adopting a child with special needs, and you would just want to give them a word of encouragement, a word of advice.
Ellie Sanazaro 10:30
One of the phrases that I've used a lot since we've adopted Finn is that every child is created fearfully, wonderfully, masterfully, and purposefully. So we see the Bible talking about how everyone is fearfully and wonderfully made. I like to also add masterfully, because the Bible says we are God's workmanship. I think sometimes, when we have a child with special needs...I know that when I got the test results with Rosalie, I felt a lot of shame, like what did I do wrong? Why did this happen to me? I felt like it was something that I had done. Even if it's not something that I directly caused, I still felt a lot of shame surrounding that, like I had somehow made a child who was less in a way. Then I look to the Bible, and it says, just exactly the opposite, that we are God's workmanship. There's no qualifiers on that. It doesn't say you are God's workmanship, if you're able to walk or you're God's workmanship, if you're able to talk. It says that we, all of us, are God's workmanship created in Christ Jesus. So God created each one of us masterfully. He didn't make mistakes. He didn't kind of create one person with less quality than another person. He was masterful with each and every one of us. Then purposefully, I know in my pregnancy, with Rosalie, I worried a lot about her future and what is she going to do? You have all these expectations and aspirations and dreams when you become pregnant, and then you get a diagnosis, and you feel like well, there goes all those things that I had imagined. Remembering that every single person created by God is created with a purpose. He has good plans for us. There's not one life that somehow has less purpose than another. God has a purpose for every single child. I think the world and even sadly, the church, oftentimes can make us feel like our children, or individuals with disabilities are less valuable within the body of Christ. Looking to Scripture, I feel like it's exactly the opposite. I would just encourage people to know that their child is made in that way, fearfully, wonderfully, masterfully, and purposefully.
Carrie M Holt 12:52
I think when we think about our kids that way, I know in the month of May for our podcast, we're talking about mom guilt. I think there can be a lot of guilt and shame, especially if you know from a medical standpoint, that there might be a genetic component to your child's diagnosis. I love how you said that. God doesn't make mistakes. These are masterful children who are made in the image of God, no matter if they from the world's standards, from the outside look different that they can speak or, or walk or whatever it is that we try to put a label on as normal. They're wonderful image bearers of God, which we're going to talk about that in a minute. Did you have something you wanted to say to that?
Ellie Sanazaro 13:48
I just feel like also thinking about the church, and just my own experience. I felt like what I expected with adopting Finn, and when I was pregnant with Rosalie, that maybe God couldn't use my children with disabilities, as much or in as mighty of ways as he could use someone who has more obvious abilities. I just want to go back to Scripture. There's verses that say that God's power is made perfect in weakness. The verse that talks about the body of Christ. I Corinthians 12 talks about how those who seem weaker in the body are actually indispensable. That's just so significant to me that even in the church, I see us sometimes saying, "Oh, well, God, he's not going to use that person in such a way because of XYZ." Actually looking at scripture, his power is made perfect in weakness. He is not limited by any of our limitations, so just having the expectation that God is going to use our children who have disabilities, I think is so important too.
Carrie M Holt 14:58
Yeah, definitely. That's a huge, huge thing. I know sometimes that one of the areas I think that special needs moms can really struggle in is that area of connection, whether it is connection with a spouse, with their child, connection even in the church, and just those relationships. If you could give our listeners just one piece of encouragement in an area of connection that you feel like, you have really learned something. Do you have a word for that?
Ellie Sanazaro 15:33
Yeah, that's a tough question, I think, you know, with Finn having a disability, and then also, him being adopted, there's a period of time where you are bonding with your adopted child, because there's nine months in the womb, when a mother is bonding with her child. When you adopt a child, you don't have that time. So when you bring your child home, that bonding is happening. With Finn, we had that going on, and then he had some special needs. He didn't smile for a really long time, as early as my daughters did, which is something that helps you connect. Then he was in the hospital for about three out of the first five months of his life. There were times when I couldn't even hold him because he was on a ventilator and different things. I do think that there were a lot of obstacles in the way of our connection at the beginning. I do think that connection is something you just have to contend for and keep fighting for. You have to just, I think, sometimes trust that it's there, even when you don't see obvious signs of it, or maybe you don't feel as connected as you would like to. I know there were times, especially in the hospital, when I couldn't hold Finn. He was brand new, we had just met him, and then we couldn't hold him. That was really hard. I think just trusting that me talking to him, me holding his hand, and doing what I could do was going to create that connection and foster a deep relationship. 18 months later, now, we're seeing the fruit of that. In the midst of that time, I didn't always feel that. Is it happening? I guess just trusting what you put into it, you are going to reap.
Carrie M Holt 17:35
Definitely. How do you feel like our churches can support families who are, have children with special needs, or adopting children with special needs? You talked a little bit about how we view our children that they are part of the body of Christ, they're valuable members of the church. I've seen that just with my own son. One year at Christmas, he sang a song. He had vocal cord paralysis, so he has a trach, and he's been on a ventilator. He still is when he sleeps. He sings really off key. As a mom, when he got up there on that stage, I just thought about all the people... I'm very much like you, type A. I want everything to be perfect. All I could hear was how he was singing off key. All everyone else could see in here was that this kid with a trach, who didn't speak till he was almost three, could sing and praise Jesus in such a heartfelt way, because he has a connection with the Lord in everything that he's been through that I don't have.. How do you feel like the church can help families and support families? I don't know if I am asking you this question right, but just helping families and supporting them with connection.
Ellie Sanazaro 19:08
I think a big thing is making it easy to come to church. I know there's statistics out there, and they all say around 90% of families who have a child with special needs don't attend church. There's a lot of different reasons for that. But a big reason is that the supports aren't there for them when they get to church. So, they have a child with special needs, and maybe the children's ministry does not have the supports in place to accommodate that child. Then the families don't come. Maybe the church itself is not physically accessible for a wheelchair or something, so then the family doesn't come. Maybe it's just really challenging to get there, and the family is always late and they feel embarrassed when they show up and then they stop coming. There's all these different reasons and obstacles for special needs families to get to church. I would say, the biggest thing the church can do, well, there's lots. One of the biggest things they could do is just make it possible and make it as easy as possible for the family to come. If there's a child who needs accommodations in the classroom, put those in place, like find someone to be a buddy for the child. Whatever needs to happen, if they need to get some sensory materials. If they need to do some special trainings, like, there are resources in the community to make that happen. I think that is the first thing. Make it possible for the child to get into the classroom and to be able to be successful in the classroom. There may be other things like maybe the family has a child in a wheelchair, and it's hard to get out of the car. Having people in the parking lot, so the family can just pull up and they can help the family get into the service and maybe park their car for them. I don't know. There's so many little things that could be done, but eliminating as many obstacles as possible for families to get there because it's already so hard. So I would say that would be a really big thing. I think another one is also including the child and celebrating the child. Again, seeing the gifts that that child possesses, even if they aren't necessarily obvious at first sight. I think some churches have a separate special needs ministry where kids with special needs are put into a classroom away from their peers. Some kids do benefit from that, but I think for most children and most families to have the child actually included with the rest of the children's ministry alongside their peers, that's not only going to help that child who has a disability, but that is going to impact every other child and every other teacher who's in that class. Again, we all learn from people with disabilities. It's not just that we have something to give to them, we have something to receive from them as well. I think there's so much. It's just like scratching the surface.
Carrie M Holt 21:57
Yes, for sure. I've been so appreciative of our own local church, because at a certain age of maturity, encourage the kids to be serving and giving back. They've created opportunities for our son, Toby, to do that. One of the things he does is actions to the songs, in the kindergarten through third grade room, or even in the preschool room. One of the things that they did was they even made the actions. I mean, some of them involve the lower body, but a lot of the actions are the upper body, the hands and the arms and all of that. He absolutely loves leading worship. It's given him such joy and a purpose in that. I think you're so right with that. I would love for you to tell us a little bit about your book, Image Bearers. I know you touched on kind of the idea a little bit earlier in the show. I have had the opportunity to purchase the book, and I've had it for I think about a week. It is absolutely beautiful. I believe every family needs to have this book on their shelf. I love children's books. I am a former elementary school teacher, now homeschool mom, and I personally have this huge collection of picture books, and my youngest is 11. My oldest is 17. I don't think it matters what age your kids are, they need to have this book. So I guess maybe tell us a little bit about your book and how the idea came to you and what purpose that you hope for it to accomplish?
Ellie Sanazaro 23:38
Yeah. Thank you so much. Image Bearer is a children's book that I wrote in the hospital actually. Finn, it was his third hospital stay. It was his longest one, not his scariest one, but probably his most frustrating one. We felt like there were certain tests that needed to be done that he wasn't getting and certain procedures that needed to be done that he wasn't getting. It just felt very lonely in the hospital. It can be really discouraging when you feel like you should be able to go home, and you're not getting the support to do that. I remember the one night I felt so discouraged and felt kind of like even though his medical team, they were so incredible, and they worked so hard to give him what he needed. I still felt like his life wasn't being valued the way that I wanted it to be. We were sitting in this hospital. At that point, he couldn't breathe on his own. He couldn't eat on his own. He couldn't lift his head, and he was five months old. We weren't getting the tests we needed. I just felt like, gosh, people don't realize how valuable his life is. I was sitting there in the hospital room alone, well Finn was there, but he was asleep, and I was just reminded of Genesis 1:27, where it talks about how God created man and woman in his image. I felt reminded that this is why Finn's life is valuable. He's not able to eat, he's not able to breathe on his own. He's not able to lift his head, but his life is still valuable because he was wonderfully made in the image of God. Then I had this realization, like, why wasn't I taught this in Sunday school? Why was I never taught about disability through a biblical lens? In church, we never talked about disability, and when we did, it was only because we were talking about one of the stories where Jesus healed someone which are so important. There's so many people who don't experience physical healing in this life. I just thought, I was never taught anything about that. I felt like I had to create something. I was a former first grade teacher as well, so I just felt like there needs to be a resource for families. There needs to be a way that we can be teaching this to our kids from an early age. I thought about writing a children's book. That night in the hospital, wrote a poem because the book rhymes. I scribbled it down on a pad of paper, and then sent it to my parents and was like what do you think? I have this idea. I started sending it to a couple more people, and people were really excited about it. I thought maybe I just need to do it. I ended up collaborating with an illustrator. Over the next, it was about a year from the time I started, I wrote the book to when they arrived, in St. Louis, where I live the physical copies. Over the course of about a year, it turned into a children's book. My hope is that it will do exactly that, that it can be a resource for families and for churches. I'd love to see it used in Sunday schools as well, to teach kids a Biblical view of disability, to introduce them to the concept of what it means to be an image bearer, for every child would be able to walk away knowing the truth that every single person, no matter their differences, everyone is wonderfully made in the image of God. My other hope is that it will just introduce kids to different diagnoses, different medical equipment or devices that children might be using. I just hope that it'll help families navigate those tricky conversations. The topic of disability can be a challenging one to address. I hope this resource will help families navigate it through a Biblical lens.
Carrie M Holt 27:34
Yeah, and it is. I think it's going to be a great, great tool. I know it already is just from what I've seen on Instagram. So where can our listeners find your book and find you on social media?
Ellie Sanazaro 27:50
They can find me on Instagram, @imagebearerbook, and then on Facebook
@image bearerbook. Then the website where you can purchase the book is
www.imagebearer book.com. On those three places, if you look for Image Bearer book, you will find us.
Carrie M Holt 28:12
Great. I just want to thank you so much, Ellie, for being with me today, for answering some questions. I think, the conversation that we had and the things you had to share, is going to be so encouraging to our listeners. I think probably one of the biggest takeaways for me is just that we need to continue to see our children as image bearers not for what they're doing, but for who they are created wonderfully and masterfully in God's image. So thank you so much for being here.
Ellie Sanazaro 28:42
Yeah, Carrie, thanks so much for having me. It was so much fun talking.
Carrie M Holt 28:58
Thank you for joining us this week on Take Heart. If you're enjoying our podcast, could you do us a favor and leave a review on whatever platform that you're using to listen? You can follow us on Instagram or Facebook @takeheartspecialmoms. If you have any questions or comments, or would like to share your story with us, please follow the links in our show notes. We love hearing from our listeners. Be sure to listen in next Tuesday as Sara continues our Take Heart Summer Interview Series with a special guest?