Hope for Down Syndrome: Gracie’s Story

Listen on Apple Podcasts

Hope for Down Syndrome: Gracie’s Story

Christina McEndarfer  00:12
Welcome to Helping Kids Be Kids the Little Light House Podcast, where our passion is to help parents of kids with special needs be competent caregivers. Our mission is to glorify God by improving the quality of life for children with special needs, their families, and communities. I’m your host, Christina McEndarfer, and I’m so glad you’re here. Today’s guest is Michael Ledbetter. Vice President of land acquisition and divestitures for sanguine gas exploration. He and his wife Sarah are connected to the little lighthouse because their daughter Gracie attended the school for four years. She graduated this year and is now at school at Jinx elementary school. But he’s come back to share with us from his heart about his family’s journey with Gracie and how they’ve learned to receive the gift of who she is. I’m so thankful for his authenticity in what he shared and for the insights that he passes along to us about how to lean into the hard times and value relationships and learn how to thrive in spite of great suffering. Thanks for joining us for our conversation today. Mike, I’m so glad you’re here. Thanks for coming in today.

Michael Ledbetter  01:38
Absolutely. Thank you for having me. I really am honored to be here.

Christina McEndarfer  01:42
Your family’s been involved in the lighthouse long before Grace was here.

Michael Ledbetter  01:47
Absolutely. Yeah. My mom is I’m sure known around these halls as Miss Shelley. Yeah, she’s mom to me. But mom has been involved for quite some time. She obviously owns a local dance studio here and always comes and volunteers during the summer teaches kids some some fun dances to get him moving and get that PT and OT and all that in a fun, interactive way. She’s so gifted at that is I know that I can’t remember how many years she’s had her studio. It seems like she’s approaching 40 years. It’s coming up I think this year is 39 years. So she has always really had a heart for kids with special needs. Just as growing up. That was something that was very important to her. And I think a lot of that was instilled by her parents, they they volunteered, not necessarily with people with special needs, but they were huge in volunteer, give your time to others find a calling and make a difference in people’s lives. That was always hugely important to mom and she’s continued to offer those classes to special needs kids free of charge and they love it just as much as the kids here. Love it. They love to move. They love the music. They love to sing and dance and it really warms your heart.

Christina McEndarfer  03:08
That’s definitely one of Tracy’s gifts. She’s a dancer,

Michael Ledbetter  03:11
She loves to dance, she loves music. At home, we can turn on a song and she knows every word to it. And she has her own dance and yeah, it’s it’s fun to watch. Yeah, that’s fine. We did that pups. Yes. And food trucks fundraiser a couple of years ago, and we had a stage out there. And she was the star of the show. She just started her own dance performance and the rest of her friends joined her. Absolutely, yeah. Very infectious personality for sure. So she she loves to have fun. So

Christina McEndarfer  03:44
Well tell me a little bit about your family in and your journey with Gracie.

Michael Ledbetter  03:49
Sure. So my wife and I my wife’s name is Sarah. We are the parents of Gracie lead better. She is almost six years old. She’ll be six in December. And she is a big sister to Millie, who is our three year old daughter Hayes, who is our two year old son and then a brand new baby brother Brooks, who is two months old. And Gracie was here at the little Lighthouse for four years and just graduated this past spring. So during those four years, she just grew tremendously and my family is deeply indebted to the school and its community for that. She’s at Jinx now Jinx kindergarten, she is doing well there. So this little lighthouse really prepared her well for that next next journey. So to circle back the way we got on the road to the little lighthouse. I’ll just tell you how our journey began. My wife Sarah was 15 Weeks Pregnant with Gracie and just a little backstory Gracie is actually our second child, our first son Reed is actually in heaven. He would be seven years old now seven as of this last September. And he was stillborn at 40 weeks, actually two days past his due date because of a knot in his umbilical cord, and it was just a completely random and horrible tragedy for our family. So as you can imagine, at that point, the innocence of having kids was pretty much stripped away from us when that happened, so about five months after we last read, we were blessed with the news of Sara’s pregnancy with Gracie. As I said before, around week 15 of that pregnancy is when our journey to the lighthouse actually began. So we were referred to a high risk doctor to monitor the blood flow on Grace’s umbilical cord because of what had happened with the reed. And at the time, we had no other income, an inclination other than this should be a completely typical normal, healthy pregnancy. But while we were at that 15 week appointment, you know, the umbilical cord look great, but that ultrasound soon revealed some other fetal abnormalities, and several markers for trisomy 21, otherwise known as Down syndrome. So about a week later, Sara took a blood test, and that definitively diagnosed Gracie with down syndrome. You can imagine having just five months before mourn the loss of our first child due to a completely, you know, horrible tragedy. Now, the sudden we were faced with this news of gracies diagnosis, and we were very emotional, it was pretty frightening and devastating. And really, we had no idea what to expect. And so we ultimately began to prepare ourselves for the worst yet again. And so as I said, scared to death. angry, sad, worried, and we prayed a lot. We said, No. Why? Why God, Why us? You know, we just buried our son. And now our daughter was going to have Down syndrome. Why did we have to take this road less traveled again? You know, all the sudden, all of my hopes and dreams for my daughter flashed before my eyes and just vanish and start to think what medical issues what developmental delays would she face? What was her life going to look like? And I thought to myself, am I ever gonna be able to walk my little girl down the aisle at her wedding. So just a full gamut of emotions, and by God’s grace, and through a lot of prayer and education, we ultimately came to the realization that Gracie in our family would persevere through this, we were going to be okay. And in fact, we were actually going to be better than okay. And hindsight being 2020 Man, I wish I could slap myself and say, Hey, quit being sad about this, this is this is a gift. God is giving you this gift. And there there is a reason that God has picked our family to have Gracie and ultimately, you know, as I said, we’re, we knew we were going to be okay, we’re going to be better than okay. And we were going to teach and love her and protect her and foster her development and that is all that mattered. So having gone through what we went through with Reed we, we said okay, we can either lay in bed and pull the covers over our head every day and not get up where we can get up and face this head on with as much passion and gusto and try to find some good in this and ultimately, after talking with people who have had children with Down syndrome, after getting involved in the Down syndrome association of Tulsa, talking to my mom who has been so active in the lives of of people with special needs throughout her entire life, we decided that we were going to make something good come up this, and I would encourage anybody out there who might have found out news that they think is bad news, you’re gonna have a child with special needs, I would encourage everybody you know, it’s okay to feel lost and lonely and abandoned by God, it’s, it’s okay, that’s a, that’s a natural response. Not everybody’s gonna say it, here we go, we’re gonna, we’re gonna face this head on. Take, take your time, give yourself some time to process. But ultimately, know that surround yourself with a good support system, talk to people who have who have walked the road less traveled. Find those trusted sources, find those trusted individuals that you can share with, share what’s on your heart, and not feel like they’re gonna judge you. And ultimately, you’re going to realize that this is a gift. And you’ve got the opportunity to not only impact the life of a special little person, and who’s going to grow into a wonderful adult one day, but also inspire many people along the way. In your journey. I would say that would be my advice to somebody and I know it sounds cliche, and I know it, it sounds a lot in action, it’s a much more difficult, easier said than done. But hang in there, keep your head up and know that there is a reason that this has happened to you. You might not realize it in the thick of the emotion. But step back and know that you’re gonna be alright. And and you’re gonna figure it out.

Christina McEndarfer  12:10
It seems like part of what’s so hard about finding out this news is that there are a lot of possible medical complications that come along with down syndrome. Gracie has had some of those, she had to have a heart surgery.

Michael Ledbetter  12:29
Gosh, early on in Sara’s pregnancy with Gracie, we had a fetal echo. And at the time, that cardiologist had said, there’s a very good chance that she’s going to have to have heart surgery. You know, it could be as soon as, as the time she comes out of the womb. Or it could be you know, three months, six months, it’s tough to say. So we said, Here we are dealing with with all this. And then we get that news. And you just think my gosh, can we catch a break here. But again, you worry about what you can control, you have no control over, over, over that all you can do is pray that that you know, whatever is going to happen is going to work out and and everything happens for a reason. I’m a firm believer in that and try to stay as positive as you can. And so Sarah gave birth to Gracie. And that evening, after the dust had settled, we sent Gracie off to get an echo. And they came back cardiologists came in a couple hours later and said, Hey, great news. We can wait until she’s 3456. He said we’ll just we’ll let her tell us when she’s ready. So Wow. Finally a bit of good news on the medical front and said okay, this is we can we can handle this. So this is thank god so and so we began to go in I think it either every six months to a year to have checkups with with the cardiologist and around when she was three, I believe that I think it was that spring or cardiologist said yeah, you know, it’s it’s probably time whenever it’s convenient for you guys. We’re, you know, we can do it this summer next. And we said okay, we’re big proponents of Alright, let’s just get it done. Otherwise, we’re gonna, we’re gonna sit here and worry and, you know, lose ourselves in too much thought here. So we do Some are scheduled the surgery, Sara was actually around six months pregnant with Hayes are now two year old. And so we tracked over to Oklahoma City and had the surgeon who we, we believe is the best and in the state, if not one of the best in the country perform surgery on Gracie and my gosh, talk about another flood of emotions. I remember the night before the surgery, and really the couple days leading up to the surgery, you know, you start to think, okay, is you know, is this the last time we’re gonna be together as a family like just the the things the places your mind can go and then you reel yourself in anything. Okay? God, bring me back here. Everything’s gonna be okay. And I remember the night before my mom was was watching had come over to our house to stay with Millie. We were over in Oklahoma City. Already, Sarah and Gracie and I. And remember, we facetimed with my mom and Millie and we all ended up in tears and gracies she’s just happy as can be. She’s, you know, so we’re all crying. And we looked at her and she really provided us strength to get through the next couple days. And that following morning, we took her in, had all the pre op done and I would venture to guess by 630 that morning, we had handed her over to the surgeons and said you know she’s in your hands and in God’s hands and we pray that this is you know, gonna you know let it be God’s Will so we a lot of nervous hours, a lot of updates from the OR but she did great surgeons came in said everything. This was textbook I remembers is what they what they said so she did wonderful. And yeah, such a relief. Such again, another flood of emotions. But I continue to say faith in God and surround yourself with with people you can can pour your heart out to without judgment. Yeah, that’s that’s what got us through those. Those trying. weeks leading up to and days after the surgery.

Christina McEndarfer  17:55
Yeah, so cool. And then listening to your story. The question that keeps coming to me is how do you see Gracie as separate from her diagnosis? Like, she’s a child who happens to have a syndrome but she’s a she’s a beautiful little girl. Are you able to separate those two things and the way that you interact with your daughter?

Michael Ledbetter  18:20
For sure. Yeah. I mean gracies to us, she’s just another member of our family and she Yeah, Down syndrome is is it doesn’t define who she is. She is still a very bubbly, vibrant, lovable, joyful child and don’t get me wrong she’s almost six and we still see a lot of that honoree six year old and definitely I wish that some of those developmental delays in terms of the temper tantrums and everything where I really wish those delays would come in so she really watching her with our other kids. I think they look at her and they Okay, there’s there’s my big sister. Yeah. And you know, we’ve just started to try to introduce, you know, you know, Gracie has Down syndrome and Milly our three year old says, Mommy, Daddy, I want Down syndrome. So, like, well, doesn’t quite work that way. But we love that you love Down syndrome. So you know it’s it’s she is a gift just like every one of our children art. Yes, she is a gift. And sure she presents some different challenges. Some developmental delays. You know, it takes her more time to do some things she might have a more difficult time communicating sometimes. But she is no different than than Millie. She’s no different than Hey, she’s no different from Brooks in our eyes. She is worthy she is. We’re gonna treat her just like one of the gang.

Christina McEndarfer  20:23
How has having Gracie in the mix in your family impacted your marriage?

Michael Ledbetter  20:29
Sure, I would say even before Gracie, it was Sarah nice marriage. You know, I always tell the story. We were like any other happily married couple, you know, so naive. So innocence is bliss. Oh. But when we last read, I feel like we could have gone one or one of two ways we could have. There could have been a, a, something driven between us or we could have come together. And we we chose to come together. So as we got the news of Gracie, that gift that Reed gave us that was he was able to unite us and strengthen our marriage to a level that I don’t know that I could ever even really, truly put into words. I think the fact that we had that we were able to deal with gracies diagnosis and are able to just on a day to day basis manage the chaos that is having four kids Yeah, right now five and under, but getting ready to be six and under one of those being Gracie who has special needs and different challenges that that we’ve got to address. So it is stressful. I’m not gonna sit here and tell you that it’s a walk in the park. It’s it’s at times Far from it. But ultimately, again, I go back to there was that spark when we last read and and I would like to think too, that if we hadn’t have last read, and we were faced with the news of Gracie, that would have been the spark that we need to come together. Right now. Sarah is the only one at that point that knows what I’m going through. I’m the only one that knows what she’s going through. And we just said, Here it is. We’re laying it all out to each other. And we’re going to figure this out. I can’t say enough how important it is to have Sarah in my life, really. And truly she should be sitting here she is the rock of our family. She does all the research for Gracie. She knows the best ways to do and I say Okay, awesome. And I fall in line. And I watch her because she is such a wonderful leader. And it’s difficult. It is a difficult difficult job of being a mom of kids with special needs. It is Yeah, God. God chooses those families, those mothers and fathers and, you know, just when you think you can handle it, he blesses you with, with the patience and strength to pull through. And I can’t emphasize enough just the role of family and strong marriage and and again, it is I’m not gonna fool anybody out there. Everybody knows it is not easy. But having those open and honest conversations and tell each other how you feel. And again, no judgment. That seems to work good for us. And I, again, so thankful for for my wife and the role that each one of us plays in raising our kids.

Christina McEndarfer  23:41
Thank you. I’m really glad that you said that. I feel like that just needs to be said, I mean, just acknowledge is hard. But it sounds like for you guys leading into the heart has drawn you closer to one another that you know each other and you’re better champions for each other than you would have been if your life was easy. And you just keep leaning in and receiving the gift of each other and the gift that’s presented through the hard things that you have to face.

Michael Ledbetter  24:09
Absolutely, absolutely. So yeah, there’s nothing easy about it and and it makes you appreciate the moments that that do go somewhat smooth. You’re like, man, all right. All right, we can enjoy that one. But it’s also it. You know, you sit back at the end of the day and you think Alright, what what did I do good, what did I do bad? What did we do? Good. You know, and you take sort of an inventory and you say all right there was there was more good than than bad. So and you know, yeah, I it’s hard, for sure. So,

Christina McEndarfer  24:56
Well, I’m glad that you’ve been able to share with us your journey. We have a lot of moms. And I would love for Sarah to get to share her perspective. But it’s really helpful to hear from a dads perspective, too. I know a lot of times they’re overlooked and like not factored into the equation. So it’s an encouragement to see how intentional you are as a dad and as a husband. And bringing strength to your family. I I’d love to know for you as gracies Dad, what does it mean to you to help Gracie be Gracie?

Michael Ledbetter  25:29
So it’s easy for me to let Gracie be Gracie because she is. She’s so unique and so bubbly and so joyful. Like she just she just exudes happiness. So you know that for me, too. I don’t know. Can I start over?

Christina McEndarfer  26:00
Of course. Yeah. No, you’re doing great. I usually let people think about that before. I think if you wanted to wrap in that part of like, what I you were sad about you felt like she wouldn’t get to live a full life and then, like how you have hope for her. Okay. Yeah, I thought that would fit in. Well, yeah. I was gonna ask a question about that. I know, we can just like, kill two birds. Okay. Yeah. Well, Mike, thank you so much for giving us a glimpse into your perspective as a dad who’s chosen to lean in and be a man and a husband and a dad to all of your kids with such heart. I’ve gleaned a lot from this. I think others will be very encouraged. I always ask my guests what it leads for them to help kids be kids. I’ll let you personalize that for you. As gracies Dad, what does it mean for you to help Gracie v Gracie.

Michael Ledbetter  26:57
So, for me, that’s turning on the music, and just watching her dance. Because again, my mom, as we’ve established loves dance. And to me dance is a big part of of the happiness that I’ve had in my life. So being able to turn on the music, watch her rock out and just dance. You know, there’s that I forget who sings that whole country song. And the main chorus is I hope you dance. Yeah. And I often think you know what, if nothing else, I hope you dance. And one of these days because of what has happened here at the little lighthouse because of Sarah and I and the rest of my family in my extended family and everyone’s support you know that her teachers now Jinx. I am confident that one day I will walk her down that aisle and I will have that first dance with her at her wedding. I I know in my heart that that’s the direction that we are heading. And I just I can feel it. And it is because of this place the little lighthouse, this place right here at the corner of 36th and Yale that the foundation for that was established. And I again I am so thankful and my family is forever indebted to the school and all of the teachers staff and administration and all of the benefactors Yeah, for the years that have made this happen. It’s truly a magical place. And and I know I’m straying away from from the original question here but none of this none of I’m not sitting here talking about Gracie without this place. And and for her to be her. Turn on the music. Listen to your favorite song. Sing it as loud as you can. And dance. So that’s that’s what it means for me to to let Gracie be Gracie.

Christina McEndarfer  29:36
Yes. That speaking of song lyrics that makes me think of an old hymn that says strength for today and bright hope for tomorrow. And it looks like to me because you have hope for her future. You’re able to live in the present and enjoy who she is and keep pouring into her and help her to become the best version of herself. She could be

Michael Ledbetter  29:59
Absolutely

Christina McEndarfer  30:01
Thank you so much, Mike.

Michael Ledbetter  30:02
Thank you really appreciate it. Yeah, absolutely.

Christina McEndarfer  30:06
And I want to thank those of you who’ve listened in on our conversation today. There’s a lot here. And I hope you’re able to identify with Mike, in the authenticity, about being honest about the hardness of unexpected sad news. I mean, nobody wants their child to suffer. And it’s important to be honest about that. It’s important to choose relationships, and allow the hardships to strengthen those relationships rather than strain or sever them. And I hope you dance. Thank you again for joining us today. If you have any questions for the little lighthouse, or stories about how this podcast has benefited you, we would truly love to hear those. You can email us at helping kids podcast at little lighthouse.org. If you’re new to the podcast, be sure to subscribe and share it with your friends. You can find us at little lighthouse.org and on Facebook, Twitter, Instagram, YouTube and Pinterest. At the little lighthouse, we gladly give away our services and resources for free. We can do this because of the generosity of people who believe in the value of all kids. If this podcast helped you consider joining the crew a passionate and determined community of monthly givers on mission to discover solutions that change the future of kids with special needs. Until next time, enjoy helping your kids be kids

Leave a Comment

Your email address will not be published. Required fields are marked *