Parenting A Child With Down Syndrome

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The world is a better place because of our children will that's shown a make describing her beautiful daughter Sarah, who has down syndrome today and Focus on the Family were to hear about Sean Unser's remarkable journey and how God Showing up in their lives. Your hostess focus presidents and Dr. Jim Daly and I'm John: John, I wonder how many people know that today, March 21 is world down syndrome and which is a day of celebration global awareness officially observed every year by the United Nations since 2012, and this is a growing global campaign to advocate for the rights inclusion and well-being of people with down syndrome, but ironically we completely disregard pre-born babies who denied a fight with this particular disability. It's estimated in the United States that 67% of pregnancies with down syndrome child and an abortion. 67% in some European countries. It's as high as 90%. That is really sad and any abortion is tragic. It's heartbreaking that so many in our culture or looking at these precious lives saying doesn't matter. Not valuable, even though these are babies created in God's and absolutely it doesn't mean there's not hardship there will be, but how do you become more like Christ right there within your own family. But here's the thing John got doesn't make mistakes.

There are going to be obstacles in the world that is full of sand in his phone away from God. But we can quickly see those imperfections and someone with down syndrome or some other physical or mental disability, and maybe we judge them or we pity them for the condition therein. But God often does his greatest work through our weaknesses right. And where there is a mass God has a greater plan of purposes far beyond what we can imagine. And that's been the experience of our guest today and I'm looking forward to discussing this issue with her yet. Shawna is an author, speaker and disability rights advocate. She's the director of radio marketing for Johnny and friends the ministry founded by her good friend Johnny Erickson taught and Shawna is the mom of three and she is a contributing author to book your offering today called real families, real needs a compassionate guide for families living with disability and then Shawna has captured her own personal story a little booklet. My baby has disability life-giving questions and answers and you can learn more about these resources by clicking the links in the episode notes Shawna, welcome to Focus on the Family, thank you for having me. I'm so happy to be here that were recording in southern Calabar friends there and ambassadors conference room actually was nicer than available to us.

I Sean I understand you've been a pro-life advocate for more than two decades and you also work with pregnancy resource centers.

By the way, let me get that unabashedly plug for pregnancy resource centers you want to get involved in your community, call them up and see how you might volunteer help them certainly support them financially. The PRC's deserve the kind of local support and there in your community. I am almost sure that there therefore is so you were doing that and in 2005 pro-life convictions were tested. However, they tested well. I have ended up being pregnant with my third baby and when and for what I thought was going to be that routine ultrasound where you get to find out if you're having a boy or girl.

I'm confessing that was about the extent of my vision for the day. I wanted to know what color I was going to be painting the room home and as I laid on that table and the ultrasound technician took longer and longer to look at this baby growing inside of me and then settled on my baby's heart and stared at the ultrasound image of Sarah's heart for close to 45 minutes and with my untrained medical I knew we had a problem you didn't know quite yet. I really had no idea what the problem was that I knew that I had I had had two children already. I knew we can take this long right doing an ultrasound and I knew enough about the human heart to know that there were supposed to be four chambers and and Sarah had no chambers in her heart.

It was a circle with a little piece of tissue that would kinda float around every time my heartbeat and I asked the technician when even a tell me and she said oh I'm going to have the doctor come in and see you and now the doctor sat in front of me and and tell me that my baby had what was called a Navy canal heart defect and that that specific heart defect was a red flag for down syndrome as she then told me about all the other markers that she saw through ultrasound and immediately offered an abortion and that that point I couldn't really speak. I just shook my head. Now let me assure that in the moment when when a medical professional, young and obviously are going through trauma and you're getting all your fears confirmed the things you may have even had mommies intuition about right and then they say we would highly recommend an abortion. What flows through your mind. This is ridiculous, but I was sitting with my arms crossed and I literally pinched my arm. It just didn't feel like reality, I don't know that I could tell you in the moment.

There were a lot of thoughts going through my head. Other than no, but after the fact. Very soon after I left the office.

I just started praising God that I knew the truth of Scripture that all life is sacred. It was actually Psalm 16 that God gave me and carried me through the next five months of that pregnancy. Specifically, the boundary lines have fallen for me in pleasant places and I have a delightful inheritance and you know I would drive by Hemingway were in the hospital all the time.

After that, throughout the rest of the pregnancy. I buy it became a high risk pregnancy. Sarah was born on a beautiful June morning and just quickly started dying as they told me because of her heart defect and that it would be six weeks until she was strong enough to have the surgery itself, and then another two months of staying in Children's Hospital in Boston recovering and so every day I would see other moms with healthy babies, no heart defect no disability. And God would just remind me the boundary lines of fallen for me in pleasant places to good evening that mean there's there's that immediate faith response which was a good step in God's direction did you at some point in the journey begin this.

I'm not feeling close to the Lord and or did you have moments where you were struggling. I had moments of struggling with Sarah's diagnosis. I certainly had a lot of fear that on this site and think what was I afraid of right but for what was I afraid of the unknown, and I think difficulty of the challenge. It would be. I think that is part of how our culture and indoctrinate us to think that people with disabilities are somehow less valuable because what what would be there to fear and down syndrome. I can say that today 16 years ago I was terrified that I didn't know what this would look like.

So I'm grateful that it didn't shake my faith totally shook my core I can say that and I had a lot of questioning the Lord, why, why would he do this to my baby, why would he do it to me and three months later after open heart surgery after everything that she had to go through at in the NICU and the Children's Hospital and I was finally told I could bring my baby home. I I said well I'm going to go for a walk before I put her in the car that made everybody nervous. I don't know if they expected me to come back or not, but I headed out with the Lord. Can I say that II say what happened to the brand. I asked for. Why did you give me the stone and how about 4 miles into my walk I really heard the Lord say you are asking for histone I gave you the bread and just about knocked the wind out of me and I walked in I said okay, I'm ready, I'm ready, let's go.

I took my baby home. I set up a little hospital room right next to my bed and and we've been doing life together for 16 years now.

Yeah I so appreciate the vulnerability of what you're struggling with his no women are listening right now. Or maybe facing all kinds of things that are challenging their face may be a diagnosis of their pre-born child or what's happening in the fears of the might be difficult in their merger to be a whole host so I do appreciate that honesty into the blackness. We all have similar heart right and wrong have doubts and fears. It's part of being in this life, but it's so amazing when we choose faith in Christ.

No matter what form that takes is a really think it puts a smile on his face. When you trust him you you had a couple of experiences that really help for you when you call, though I would call God incidences coincidences that occur one was word you are in a fast food restaurant something happens, what was that I was yes okay well I had been crying for a good many weeks at that point and I had my two older children Monica and Gideon. Veronica was six and Gideon was for and we lived out in the boondocks.

Okay, so there wasn't a matter of getting in the going out the front door going for a walk to see people I had been kinda housebound living out in the woods with these kids and I just had a little bit of cabin fever and thought okay that's enough crying for for now and let's pack up and were going to go do something crazy and go get some fries. I packed up the kids and we headed into town and parked ourselves and got our chicken nuggets and fries and just started being normal people for a moment and I know if I lasted maybe 20 minutes and then I just now had another episode.

I looked out the window and just started crying again and this lady all of a sudden I can feel her hand on my shoulder and she just tap me on the shoulder. I looked up and she said honey, I don't know what that's going on right now but you know I just want you know it's gonna be okay my friend and I are praying for you and we want you to know everything's gonna be okay. Now that would have been enough, but when she pointed to her friend. It was a young man with down syndrome and she had no idea who I was pregnant. She could see that you have no idea what I was crying as I I feel like one of those. Be careful how you entertain strangers right they could be angels, where another God incident was listening to folk broadcasts, all my goodness all yeah that's when the Lord turned my car into this holy sanctuary. Okay another day where and of course this is I lived in New England it's cold right so again were not going for a walk.

What can we do, I gotta get out of the house. I packed the kids up were going to go to the mall. This beautiful God moment where I look in the backseat as I pull into the mall parking lot and the two kids are asleep itself you know. And so I thought well gonna let them sleep I'll just listen to the radio and hear comes Focus on the Family and you know I'm I'm not quite remembering word for word, but it was something the intro was something like have you been diagnosed with an adversary.

Have you had an adverse diagnosis in your pregnancy will stay tune because this show is for you and you know that those two kids stayed asleep for that whole program so I could sit in the front and have Focus on the Family minister to me and truly I truly did feel like that car just turned into God's holy sanctuary.

Just speaking to my soul. Well, will were privileged to be a part of your story and thousands and thousands of others. This is Focus on the Family I'm John Fuller, and we've got Shauna a week with us today and she is contributed to book real families, real needs a compassionate guide for families living with disability. We've got copies of that here at the ministry just call 800 K in the word family or stop by focusonthefamily.com/broadcast Shauna you really identify with an Old Testament character. I think those that know the story of Hagar would put the pieces together but explain Hagar, her travails and how you are sure sure I well people are gonna want to read Genesis 16 to get the whole Hagar story, of course, but she's the outcast is just feeling rejected and and far from the Lord and I didn't really identify with Hagar until the night before Sarah's open heart surgery when for those first six weeks of Sarah's life.

She had been connected to all kinds of life support and we knew that open heart surgery was waiting for her in the morning and so I set myself up for this all night prayer vigil and Sarah's hospital room and right around midnight. Her nurse came in and started unplugging her from all of these life support machines and of course I was flabbergasted because I had been told for six weeks. She can't survive without this before I could say anything, her nurse pick Sarah up out of her little hospital crib and put her in my arms and said I think you and your baby should go for a walk and I was about to ask and she said just don't leave the hospital and be back in 20 minutes and it was all in her eyes.

I had 20 minutes before you know it would affect Sarah's health not being connected to life support.

So, kind of like a zombie. Even I went on autopilot down the hall and I got in the elevator and in a very childlike way I wanted to get as close to God as I could so I push the top button in the elevator. Not knowing where I was going to land.

I really had not left Sarah's room for that those first six weeks, while the elevator door opened and what was waiting for me was floor-to-ceiling glass windows overlooking the Boston skyline at midnight, it's quite a fascinating scene and I ultimately felt very small like here I am with millions of other souls. All of us needing the Lord in who in my head and holding this dying baby in my arms right. The only prayer I could squeak out was the name of the Lord and so II just said she's and I felt in that moment that God said to my heart. I see you I see you I see that dying baby in your arms and you know Sarah still had down syndrome. She was still going to need open heart surgery in a matter of hours. We didn't know if she'd survive it. That was the whole reason that that dear nurse let me go for a walk with my baby is the only time I ever held her without many tubes in between. But what changed in that moment is I was no longer the outcast, I was no longer rejected or I did not feel far from the Lord. He saw me right. He saw what we were going through and it completely changed my perspective and gave me the strength to go into surgery the next day. That's a wonderful story of the Lord will encourage us to think in that circumstance to think the Lord would do that for everybody.

And sometimes we just listen to in the direction that he's there, but sometimes were so lacking with or even having a heart open tone that will miss those moments where he's expressed yeah yeah well you know what I always life fully believe God speaks our love language right so for some of us its words. Other times it's maybe he shows us something in nature hand on the shoulder exactly right. And we do need those eyes to see, so I mean this is going to sound really very simple, but that's why we've got a stay so close to him right in the word and in prayer. I would've missed it otherwise would tell us about your daughter today. All my goodness, I'd love to you all the spheres you alluded to this earlier. The you know now I don't have those figures it's not clear what you've learned so that's what I want to hear what you okay what have I learned I have learned the truth of the sanctity of life and leave it or not. Every night when I'm praying over Sarah's we go to bed.

I am thanking God that she has down syndrome because she would not be Sarah. She would be Sarah any other way. So the very thing that completely threw me into a panic is what I am able to thank God for now. You talked about Princess dancers right Sarah of course means Princess so she is my princess and I'll tell you what that kid can day so she loves is that she loves dancing. Her favorite artist is Elvis of Corinth and she does a fantastic Elvis impersonation though. Any chance you'll get shall put on her Elvis outfit in and grab the Lycan and do a little dance for us. You know she's just everything wonderful she's got every emotion that everybody else does, which is actually something that maybe somebody listening doesn't understand folks who don't have friends or family members with down syndrome will sometimes say to me was that great year. Your daughter has down syndrome that mean she's always happy right which personally is a little insulting because it's almost taking away her humanity. She's a person she's got all the same emotions you have, so she's happy and she's sassy and she's five and she gets angry just like me and she loves Jesus effect you. You mentioned describing Sir her ability to put her warrior that would surprise some people because we assume that cognitively the connection may not be strong but how shipwrecked you know Sarah is 16 years, 16 years old at this point, her language is getting more and more understandable. I have course can understand her.

But I'll tell you what.

If there's ever a chance when the pastor anybody asks for a volunteer to pray. She's always been to be the first to volunteer, and there have been plenty of times where the rest of us. All we understand is dear God in a Sarah will just let loose and she is no calling down heaven and at the end you hear and now none of us might even know what she just pray, but I promise you. Jesus knows what that little girl prayed, and I think it makes sense. So awesome and even for some people to hear what you said a moment ago your daughter with down syndrome. You sound comfortable.

My did make them uncomfortable you right be comfortable with it. I think the last question what measures use with the transformation that you moving from what what is happened to me Lord acceptance and then you know today, you wouldn't want to do over. That's right that powerful. Some people be totally confused by that. Yeah you know it. I think that's what I always want moms to hear when they've been given a diagnosis whether it's Down syndrome or any other kind of disability or adverse diagnosis. As I remember from my Focus on the Family broadcast their you can do this right you don't don't let the world tell you that there's something wrong with your baby. There's nothing wrong with your baby.

God's hands met that baby together in your womb exactly the way he designed right so I guess if there was any do over. It would just be. I wish I was a little stronger when I went through it, but certainly wouldn't change a thing about Sarah and and that's what I want other parents to know that if they go through that initial, of course, it's a crisis. Of course there's tragedy. Of course there's trauma right we wouldn't be human.

Otherwise, if we didn't have any of these emotions, but once you get on the other side you going to praise God that your baby is exactly the way God made that baby you know Sean, it strikes me that in this day and age mamas heart for her childhood comes out so boldly and even if in the beginning you didn't feel it know you had to work through it and I so appreciate that. But that mamas heart. You think in our culture today with what I perceived to be just an all out war against children.

To be honest with you, and in so that I'm pointing that out in the you know when you look at that. It is just beautiful to see the you can embrace what is in the can trust in God and so many of us need to do that more so right with regardless right as you said earlier, regardless of our our situation. I'm I'm grateful the Lord trusted me with her eye and I for I consider that an honor yeah you know if I can speak to the mamas heart. Can I it looks different depending on who I'm talking to so and perhaps this will make sense. I hope it will sometimes have a little child you know child come up and kinda be staring at Sarah and I love this one seen where we were at a playground and a little boy. Not only was staring at her but he finally came up to me and said what's wrong with her and in that moment, my heart was just so tender because I saw this as a teachable opportunity.

Well you know what, there's actually nothing wrong with her you know she thinks a little different than you and maybe she talks a little different than you, but she loves the slide, just like you do. She loves to swaying and noticed little guy I know. Maybe he was five he can thought about that. He said okay and they played together for the next 20 or so minutes that was a wonderful gift I get the other extreme, I can get a little mama bear when sometimes I might have an adult who thinks there's something wrong with my child and you shame on me. I should have the same attitude and end see it also is a teachable moment, but I just I think this is the time for confession on this Focus on the Family yeah there's nothing wrong with her and moms kinda pulled their children away from mine, as though they think they're going to catch Down syndrome and just breaks my heart so I guess if there's anyone in the minivan right now listening to this. Think about that mom of the special-needs child, give her a little grace and mercy and realize that her child is just as valuable as yours word for all was actually showing of this been so good. Thank you for sharing your heart. Thank you for having the lessons learned good things. I hope you know the listeners and viewers. I hope you've caught the heart of what were talking about the that you've received the adverse diagnosis or maybe something else is happening in your life that is adverse we are.

Christian counselors who could talk with you even refer you to a counselor in your area. If you feel that is your next step so call us and this is humanity in all of its goodness in all its darkness and what you're going through. Certainly, something would love to talk with you about this.

We have resources for you including Joni Erickson taught his great book that Shona was a contributor of John was that that is called real families, real needs a compassionate guide for families living with disability and as you said Jim Johnny's of the main author and editor for discrete resource and is always your listener supported viewer supported ministry here at Focus on the Family.

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