Maria Revere Interview

In this episode, we interview Maria Revere. She discusses her daughter's diagnosis of Edward’s syndromeTrisomy 18, the importance of faith in her life, and her own  diagnosis of breast cancer.

Transcript

Mary Baudoin (00:00):

Thank you for joining us for this episode of This Ability Podcast. I'm your host, Mary Baudoin, and joining us today is Maria Revere. Welcome to the show.

Maria Revere (00:09):

Thank you. I'm so excited to be here.

Mary Baudoin (00:11):

Great. So tell our audience a little bit about yourself.

Maria Revere (00:14):

Okay. Well, I was actually born in Texas, but my dad was in the oil field and we ended up setting up shop in a small town outside of New Orleans called LaPlace, and that's in St. John the Baptist Parish. So I spent my formative years living there, great community. I had a lot of loving friends and classmates and families, my friends' parents, and being an only child I really needed that. I clung to that. So I went to Catholic school there, and then when I graduated high school I went to Southeastern Louisiana University, and I graduated with a degree in education, a BA, certification in special education. So I'm certified first through 12th in special ed and in general ed, first through eighth. I taught in Ascension Parish for about 12 years and I taught special education and that was really great, a great time in my life because I had wonderful coworkers and I just felt the district was leading the state along with, I believe, St. Tammany Parish in meeting the needs of the learners with disabilities. So I remember when-

Mary Baudoin (01:25):

I think that's called an individualized education.

Maria Revere (01:28):

If you have an IEP, yes. You have an evaluation and a formal bulletin, 1508 evaluation. And then if you come out with an exceptionality, you have an IEP and you are assigned an exceptionality, maybe multiple, and then you get an IEP. That was also the time that co-teaching came in, the co-teaching models. And I am fortunate to say that I've seen it in person. I implemented it with a general ed teacher. That class had the benefit of having two certified teachers in the class, not a teacher and an aid, but two certified teachers. So we could do cooperative groups, we could do projects, we could could check for their learning. It was just the best of the best. And I really feel like the general ed students gained so much by having peers in their class who had multiple disabilities.

Mary Baudoin (02:20):

Right. And that was in Ascension Parish-

Maria Revere (02:22):

Yes, ma'am.

Mary Baudoin (02:23):

... that sounds like that was like a pilot program. It really sounds like-

Maria Revere (02:26):

We were amongst the first, I can tell you that.

Mary Baudoin (02:28):

Because I don't think it's like that in all 64 parishes.

Maria Revere (02:32):

No, ma'am, it's not. No ma'am, it's not. And I found that out last year when I graduated from the PIP program, Partners in Policymaking that the state puts on to teach advocates how to formally go about advocating. And believe me, there's a lot of politics involved. One of your field trips is to the capitol, and you learn what happens when they're in session and who you contact. Just the chain that it takes to communicate with your lawmakers.

Mary Baudoin (02:59):

That sounds like a wonderful program. I would love because I would love myself to go through it.

Maria Revere (03:04):

I was just thinking, I'm like, "Mary, you need to dip in these waters."

Mary Baudoin (03:08):

And also I'd love to post that on our podcast page when that comes around again for registration of it. I would love to share that with others, because I think there's a great need for advocacy. I think people want to know how to do it and what they can do, and this sounds like a really good program that's the right fit for that.

Maria Revere (03:27):

Listen, I thought I was an advocate, and I was, but there was so much I didn't know, and it starts with the basics. Taking you back to those people that crawled up the steps in Washington, demanding for those rights. They left their wheelchairs on the ground and they crawled the steps. It starts back there. They take you through class. And it's intense and you leave with homework, and some of the homework is contacting your local representatives via email or phone call.

Mary Baudoin (03:53):

That's great.

Maria Revere (03:54):

Yeah, it truly is wonderful. So I left being very empowered. I had tools, and just how to properly write an email when you're requesting something, or when you want to send a complaint in, maybe you have a complaint with your state department or something, or the levels, you know what I mean? You don't necessarily escalate that far. There's a chain. And I had no idea. And so I absolutely left with a wealth of knowledge that I did not gain as a teacher and I didn't know as a parent. It's a federal program. It's in every state, and my friends in other states have been trying to get the word out there.

(04:31):

I'm like, "You really need to look into this." Every state has a budget for PIP. Ours is great. And you have keynote speakers from all over the country whose job is advocacy. Attorneys come, and they're our speakers for the weekend. I left with a binder. I have everybody's contact information. You make friends, and then you get to bond with your fellow classmates and have that. I'm going to go so far as to say I left with the toolkit and I'm going to find my way to the answer. I can do it. And it's those relationships. It's absolutely those relationships.

Mary Baudoin (05:04):

Sounds completely beneficial. So what brought you here to Lafayette?

Maria Revere (05:07):

I met my husband. And he's born and raised in Lafayette.

Mary Baudoin (05:10):

Oh, he's a Cajun.

Maria Revere (05:11):

He is a Cajun boy. His family's Cajun. When I started dating him, we would walk around town. This man could not stop without running into... We couldn't go anywhere without him running into somebody he knew. And I was like, "Wow, okay. This is a little intimidating." And his mom too, his mom is a veteran teacher in the public and private school system. 36 years I believe. And Sean would run into his friends and classmates and they would say, "Oh my gosh, I loved your mom. Miss Revere, she was my favorite teacher." It was great. So I guess my husband's got teachers in his blood.

(05:44):

We met and we got married in 2011. God's plan. We had a baby not soon after that, our firstborn, Sean Jr. which we called him, SJ, he's a big boy now and he doesn't like being called SJ, Sean Jr. So we had him in 2012, and I actually went to UL to work on my graduate degree. I was going to get a master's in special education. And in May I found out I was going to have another baby. My husband, at the time, was offshore in the oil field. My in-laws, who, I'm so blessed, they live literally three streets away from me. My mom at the time, she's a lot older and she still lived in Laplace. It was, "Well, do we pay for them to go to daycare so you can go back to work or do you stay home and raise the children?"

(06:28):

And so I stayed home and raised, we were raising Remy, my second born, boy. They were only 14 months apart. I always thought I would go back into the classroom. I never saw myself as not being a working woman. I didn't know a single person. The friends I was making here, everybody goes to work. I didn't know a single person who was home with the children. So fortunately I made friends through an exercise group called Baby Boot Camp. So I met a lot of ladies that became my dear friends, and our children have grown up with them. Well, 18 months later, we had Ella Grace, and Ella Grace was our third, and we were shocked she was a girl because my husband's side of the family, there's just a ton of boys. At the time we have one girl cousin. So the odds were not in our favor that we were going to have a girl. So it was a wonderful surprise.

Mary Baudoin (07:20):

I'm sure she's daddy's little girl.

Maria Revere (07:22):

Are you serious? That's a whole other podcast. They adore each other. Yes. She can do no wrong and she doesn't have to do anything when daddy's around.

Mary Baudoin (07:33):

How old is she right now?

Maria Revere (07:34):

She will be nine this month, on the 28th. Yeah, she'll be nine.

Mary Baudoin (07:39):

Happy early birthday to her.

Maria Revere (07:40):

Thank you. Yep. So the ages in my house right now are 11, 10, and nine. So the oldest will be 12 in October. So they're all very close in age. I didn't go back to work because I was well into my thirties when I had all the children, pushing 40. My OB is the same OB that delivered all my children, and we love him dearly. But I remember being pregnant for SJ. They offering us the blood test. He's like, "Look, because of your age, I got to offer you this. Do you want to know about any abnormalities, whatever, with the baby?" Sean was with me at this appointment and we looked at each other and my husband said, "Well, what would it matter? It's not going to make a difference. We will continue with the pregnancy." Of course, I agreed with him. We were on the same page from jump.

(08:30):

So "No, no, thank you." And then we come in again with Remy. "No, no, thanks." We come again with Ella Grace. "Yeah, yeah, no, we're good." So I had Ella Grace. She, I was really, really large, and I was retaining a lot of amniotic fluid. And I remember the day I went to see him, I was like, "I don't really feel her moving around as much." So now we're at 41 weeks. And all my boys were to term and they were small kids, 61, 77, and then here's Ella. So I went in to have her and I just labored for a really long time. She just wasn't coming. And every time I turned to my side, her heartbeat would lower, and she just didn't like it at all. So finally my doctor says, "Okay, I think we need to go in and get her. It's going to be fine."

(09:15):

And so this is my first C-section. So we went in and got her, had her. Everything went accordingly. No problems, no issues. We had her, she's beautiful. The first thing I noticed about her, she had gorgeous dark hair. I was like, "Yeah, she's my kid." She was a very quiet, she was a very quiet baby. She also didn't nurse very well, and I was having a lot of trouble, and I was really emotional and I was upset because I didn't do well nursing with my first son. My second child, I had got it and I was so proud. The third one was like, "I'm going to rock this nursing.

(09:48):

It's going to be great." Well, it wasn't going how expected. And in a very kind patient nurse who worked with her and worked with [inaudible 00:09:56] and worked with Ella, because obviously you can't leave if the baby's not eating. So she finally took a bottle. She took a bottle more than she did me. So I just decided to pump. Her pediatrician came in, who was the same pediatrician for my boys. And he came in and he said, "Okay, I just see a few things here. I just want to do a little blood work for some genetic testing. It's probably nothing but just better safe than sorry." We're like, "Okay." Now her lungs were fine. She had no respiratory distress.

Mary Baudoin (10:22):

That's good.

Maria Revere (10:23):

She was eating and using the bathroom properly. So they did the blood work. And when he left, I remember looking at her and thinking, "Well, I'm not sure she looks like either one of us." Her eyes were really, really small, tiny. And like I said, she was so quiet, just agreeable, quiet, quiet. And so I asked my husband, I said, "Do you think that she might have down syndrome?" And he said, "No, not at all." Well, this is, we'll come back to this later. Well, she did everything we needed to do after the C-section. And I was fine. And we popped on out of the hospital in two days, two, three days. So we went home, everything was going well. We go to our one-week follow-up appointment to check her weight. She had lost a little bit of weight. And the doctor came in and he said, "Okay. So the blood work came back and she has what's called Trisomy 18 Edward Syndrome."

(11:12):

I could tell he knew very little about the syndrome because he said most of these children do not make it to their first birthday. And I remember thinking, "Okay, so you're telling me she's dying, but what is killing her?" Because right now I see a baby breathing, eating, using the bathroom, but you're telling me she's dying. What's going on?" He couldn't really explain any of that to me. He was not confident. I just think he had it, something's going to happen to put this baby in distress sooner or later. She's not going to be able to overcome it. I don't think we asked a lot of questions. We were shocked. I remember my eyes were tearing up. I was thinking about this today. My eyes were tearing up, but I held it together and I just carried her in the car and he said, "Come back.

(11:54):

I want you to come back next week. I want to do another weight check on her." And when we got in the car, Sean said, we need to have her baptized, like now. And when he said that, that is what really made me realize, "Oh my gosh, this is critical." His parents' house, and that was the first time I had seen my husband weep. I had never seen my husband cry before. And I watched him being consoled by his mom on the sofa. She was holding him almost like a child, like a baby, as if he were a child. And he said, the doctor said it's far worse than Down syndrome and she's not going to live. But we couldn't tell them any more because we didn't know any more.

Mary Baudoin (12:31):

And the doctor seemed like he was telling you worst case scenario.

Maria Revere (12:34):

He was telling worst case scenario. But that was all that he knew.

Mary Baudoin (12:37):

No glimmer of hope either.

Maria Revere (12:39):

None. No. No. None whatsoever. None whatsoever. By the time we got in touch with everybody, we had called the deacon that married us in the Catholic Church in New Orleans. We had become very good friends with him. And we asked him for the honor of baptizing our boys. So he drove all the way over here. He lived in Prairieville, Deacon Randy. And he came and baptized every boy for us at every church. Our priests were very accommodating. "Absolutely. He's special to you all. Yes, I want him baptized." He came to our house. We didn't have time to set it up in the church. Within two days we held a baptismal in my home, surrounded. I couldn't tell you how many people were there. And I look at the pictures today and I was holding her and it was solemn. It wasn't like weeping tears, but it was, "This is really happening.

(13:26):

She's not going to be with us long, soak up every moment and we want her soul sent straight to heaven." My husband was friends with Lori McGrew, who is founder of Maddie's Footprints. Maddie was her daughter. Lori, we came to know, because we had done some business with Maddie's. I had gone to a few silent auctions and ornament exchanges, and Sean knew Lori from high school. Lori, if you can believe it, was the first person I texted in the car. And the reason I did that is because I knew Maddie had Trisomy 18. She did. Yes. I don't know if a lot of people know that, but she did. And so she directly got me in touch with a woman named Terry Wingate, and Terry was raising a son. They lived in Rain. She was raising a son named Jared. And Jared had Trisomy 18.

(14:18):

Now, I will tell you this, today in 2024, Jared is a man. He's a grown man, and Terry has been raising him since birth. She adopted him. Yeah, this is her beautiful son. And so Terry came to our Ella's bedside probably within three weeks. I think Ella was in the hospital getting a feeding tube, because she had a heart murmur. She had a VSD. When your heart is in distress, she was burning too many calories trying to take a bottle at the same time. So she was not getting nourished. So she was withering away. She looked emaciated. Her eyes were bulging. She was thin. It was never going to happen. I didn't bat an eye about her getting-

Mary Baudoin (14:58):

So the feeding tube was the best option?

Maria Revere (15:01):

Oh, yes.

Mary Baudoin (15:01):

Yeah. Definitely.

Maria Revere (15:01):

And I have to say that my doctors or Ella's doctors never once questioned it wasn't the right thing to do for her because of her syndrome. The reason I tell you that is that at the time, I did not know the level of discrimination that comes with a child with Trisomy 18, also called Edward Syndrome. It's tripling of the 18th chromosome specifically. That syndrome comes with a myriad of diseases, most often a congenital heart defect of some sort. Usually they're non-verbal. Usually they have the mentality level of maybe a three or four-year-old, but that heart defect is the key to everything else. If you don't repair that heart, everything else will probably fall apart. But her doctors, never... They're the ones that brought it to me. I never had to ask for her to be nourished. You would be surprised, in this day and age, parents who are begging for their kids to have something as simple as nourishment.

(16:03):

And [inaudible 00:16:04] laws in the hospital, good luck trying to fight those because there's an ethics committee and it really is of their opinion. If they believe they're doing more harm than good, they don't have to give those interventions. They don't. When I tell you Ella was blessed from the beginning, that this was not our story. I was shocked. So I engulfed myself those first few years learning everything about the syndrome. One of the first specialists she met was a cardiologist, Dr Vishara, he's now in Oregon, and I'll never forget his words. He said, "If she wants to live, she's going to show us. It's not to unreasonable repair someone who needs heart repair." He's a cardiologist. He wants to fix your heart. Dr. Gutierrez was his associate, and Dr. Gutierrez said, "The heart is a selfish organ. It will take everything from the body first." So if you have a heart defect, you're going to have trouble sleeping, breathing. You may have apnea. If you force-feed by mouth, you could have silent reflux, which exasperates any sort of pulmonary hypertension, which she had as well, which is a silent dead killer.

Mary Baudoin (17:09):

It starts off this chain reaction of everything else starting to fail.

Maria Revere (17:12):

Now yes. Do some holes close up on their own? Absolutely. I never for one day considered biding our time and waiting for that. I looked at them, the first thing before you go to heart repair is we've got to get her healthy. She has got to gain weight, and we've got to try to keep her well. Your immune system can't fight off things if you don't have nutrition and you're not healthy. I never once bucked artificial nutrition formula, none of that. Now, I'm not going to say it was always easy because when you get a feeding tube, you've got to play with the rate and the volume and how much baby can-

Mary Baudoin (17:46):

Right. We've been through that With Lexi.

Maria Revere (17:47):

Yeah. It's a sweet spot. You've got to play with that sweet spot.

Mary Baudoin (17:50):

She's had a feeding tube for, let's see, 24 years now.

Maria Revere (17:52):

Absolutely. And I'm going to tell you-

Mary Baudoin (17:55):

It's amazing.

Maria Revere (17:55):

... and to be able to hydrate your child when they're sick, oh, my gosh.

Mary Baudoin (17:57):

And also, medication.

Maria Revere (17:59):

Yes.

Mary Baudoin (17:59):

That can stay down because she had though, it's called a Nissen Fundoplication.

Maria Revere (18:03):

She had a Nissen. Ella had a Nissen. Yeah.

Mary Baudoin (18:06):

Which, for those of you who might not be aware, to some degree, it ties off the esophagus where you're not able to throw up. In our children's case is a good thing because my daughter also has epilepsy. If she doesn't down her seizure medicine, she throws it up. Well then she's going to start a chain reaction of having seizures. So if she can have her feeding, her water, her hydration, and her medication through a feeding tube, I am all for that. I wanted to ask you, whenever you met Terry, and you said her son is Jared, did that give you hope because of his diagnosis and here he is, an older person with Trisomy 18?

Maria Revere (18:44):

I think of Terry all the time because she was raising Jared at a time when we didn't have instant connection. If I want to connect with somebody, I just pick up a device. It's not that hard. She had no community. When I tell you no community in the disabled world. She had family support, but that could not have been easy. And she just told me all the things that other parents were hearing. When I told her, I said, "Well, they don't expect her to make a year." she said, "Maria, we were told the same thing." She just adored Ella. And I remember her rocking. She said she reminded her so much of Jared. Yes, that was hope. And hope is very powerful. And if you don't have hope, you cannot expect anyone else to have hope for your own child. How can you expect medical providers or family or anybody else to have hope? You have got to hold onto hope, and it's very powerful and strong.

Mary Baudoin (19:38):

And your children can do miraculous things.

Maria Revere (19:41):

Oh, indeed.

Mary Baudoin (19:42):

Lexi, I was told by her neurologist, several people, that she wouldn't live to be past five. And my child is 27.

Maria Revere (19:50):

You mentioned seizures. Seizures also accompany Trisomy 18 very often, but Ella, knock on wood, has not had any. We don't know what puberty will bring. The hormones change everything in there. So as of today, she's been seizure free, but not of all of our friends are in that same case. And I've seen them live, they've come a long way with regulating seizures, which thank God. And the same thing with trach care, like Ella's best friend, Bella Grace, Bella lived... Yeah, I know, Bella Grace. Bella Grace and Ella Grace.

Mary Baudoin (20:23):

Well, and then I have a friend Molly, her daughter's Ellie Grace.

Maria Revere (20:28):

I know Ellie. Yeah, I know Ellie. Yeah. Bella Grace lived a remarkable life with her trach. And it was a great. Her mom is an RN. She's a dear friend of mine. They live in North Carolina. Rhonda. So if you can believe that we could be community miles away, I would consider her one of my dearest friends. And we still talk about Bella. We look at Bella's pictures and Bella Grace and Ella, we would dress them alike. I'm not kidding you. We would buy clothes. I'm like, "I bought one for Bella. I'm sending it to you." Back and forth. It was just the best. And we did meet up at a conference once, and of course we had every day planned. "What are the girls wearing today?"

Mary Baudoin (21:07):

Oh, of course.

Maria Revere (21:07):

It was the best time.

Mary Baudoin (21:07):

And I think that's the beauty of Facebook is that you can connect with people. I've connected with a group in England. Their children have [inaudible 00:21:16]

Maria Revere (21:16):

It's so great. There are negative things about social media.

Mary Baudoin (21:20):

Yes, there are.

Maria Revere (21:21):

There have been so much, so many positives. And at the time, it was a friend of mine that I used to teach with. We co-taught with my friend Erin, and she set up Ella's Facebook page. I didn't do that. She did.

Mary Baudoin (21:33):

Right. Okay, let's talk about that. Prayers for Small but Mighty Ella-

Maria Revere (21:37):

Ella Grace.

Mary Baudoin (21:38):

Ella Grace. I love that page.

Maria Revere (21:39):

Yeah. Erin started that because Erin was the admin at the time, and she would post pictures that I would send her and let people know what's going on. I guess a few months went by before I said, "Okay, I feel like I could take it over." You know what I mean? I feel like I can do this and it's good for me. It was good for me too, to keep people in the know. That's when I was really like, "You know what? I'm really proud of her and we're going to celebrate this." I think initially I was counting the days she was alive or I was thinking about making a bucket list. Forget it. I don't do that. I don't do that at all. And kudos to people who do it. It is one more thing for me to manage, and I'm not doing that. We're just going to live our life and take the joys and the tears as they come.

Mary Baudoin (22:21):

Regarding your family, I know Ella Grace has two brothers. How is their relationship? How do they treat their sister?

Maria Revere (22:28):

Oh my goodness. I think it's a beautiful thing. And another reason why I love Facebook. I love the memories that pop up. These boys, they're learning things that I'm not sure Sean and I could have taught. The love, of course, that's unconditional. They would love her no matter what. The empathy, the patience, the acceptance. And I have seen them with my own eyes, carry it out into the world. They don't have that fear that some children do. They marvel is what they do. "Mom, look at him over there. He's in a wheelchair. He's [inaudible 00:22:57] us." I said "Yeah." I said, "You want to go talk to him? Yeah, I do. I really, it's a celebrity. Yeah, I want to go talk to him. Absolutely." They would do the same thing with Lexi. There is no fear whatsoever. They're not scared of the equipment. And this is a really cute story.

Mary Baudoin (23:10):

I love that.

Maria Revere (23:10):

Ella had a Joey feeding pump. It was on the pole and it would beep whenever her feeding was over. This was when she was a year, I would think. And Sean Jr. was three. I lowered it so he could press it, turn it off, just for him.

Mary Baudoin (23:24):

He wanted to help.

Maria Revere (23:26):

Yes, he wanted to help too. He wanted to help. He wanted to take care of her. I will tell you, just the other day, you know they're home for the summer. She has a sleep safe bed and you close it up. So it looks like a big box, but it has windows in it. I could hear her wrestling around on the monitor. I said, "Ooh, Ella's awake." And Remy said, "I'm going to go check on her." I said, "Okay, but don't open it." I said, "Because I'm not ready to go change diaper and everything.

(23:49):

I'm still getting up. I'm coming." Well, he climbed in there. He's 10 years old. Good climbing skills. He climbed in, but he couldn't get out. He could reach her hair products that were on a shelf. It was very quiet. Okay. I didn't hear anything. It was silent for the longest time.

Mary Baudoin (24:03):

Which could make you worry too. What's going on?

Maria Revere (24:05):

And I was like, "Okay. Nobody's crying. Nobody fell out. All right, he's doing something to her. I just don't know what." I went in there. She was facing him sitting up, and all her beautiful luscious long locks were brushed out. He had put product in her hair and brushed it and styled it, and he stared at her closet. He goes, "I got her outfit picked out too. I just can't reach it."

Mary Baudoin (24:26):

I love it.

Maria Revere (24:27):

He's a mess. Yeah, he adores her.

Mary Baudoin (24:28):

What a sweet little boy.

Maria Revere (24:29):

They adore her. Now I will say as they're getting older, then they think this is completely normal and I don't punish them or there is nothing wrong with having these big feelings. And I love that they are brave enough to talk to me and dad about it. Sean has said many times recently, so he's 11, going to be 12. He often thinks about what Ella would be like if she could walk and talk. And so we have some neighbors with some younger kids and he flocks to little toddlers. Flocks. He's going to be a great father one day. He's everybody's big brother. I think it's because he has that little bit of longing to be chased by an annoying little sister. You know what I mean? He has to grieve that. You know what I mean? He's getting to the place where I think he's grieving that now, but in terms of being embarrassed or anything like that, not at all.

(25:21):

And it was funny, about two years ago, I took Remy to a baseball practice because he plays travel ball. I was sitting on the side and I was like, "Watch this Ella." I said, "We're going to see a lot of not public school kids right here. Let's see the reaction." Because you know, it is what it is. You don't see a lot of diversity in private school. It just is what it is. She was making noises, eating her Cheetos, but she's loud. I wanted to see Remy's reaction. It was no thing, rolled right off his back. But you could see it stopped the players in their tracks. And they were curious. Not in a bad way, but they were curious. And Remy told me that they had asked him about her. He's like, "Yeah, that's my sister. She's cool." They're like, "Oh, well she doesn't talk?" He's like, "Nah." It's so simple. But he's proud too. I can feel how proud of her they are and they like teaching people about her.

Mary Baudoin (26:09):

I'm glad that he's being literally so cool about it.

Maria Revere (26:13):

So cool about it.

Mary Baudoin (26:14):

"Yeah. That's my sister."

Maria Revere (26:16):

"Yeah. That's my sister. She's cool."

Mary Baudoin (26:16):

Yeah. Because I know kids have questions. Sometimes kids can be cruel or inquisitive.

Maria Revere (26:23):

Yes, and I've told them about that too. I said, "It may come the day. I hope it never happens. But it might be. There might be a situation you're in where someone might give you a hard time about your sister's inability. They may make fun of her. They may be cruel." I said, "You cannot let them cause you pain inside because you know who she is. You know what she means to us." And I said, "It could be as simple as they've never been around anyone like Ella, and you're able to... Educate them." And one of Ella's best friends right now, Poppy Mae. Poppy is a typical beautiful, healthy child.

(26:58):

And when I tell you this child sees nothing wrong with Ella, I'm not kidding you. She wanted to go to Claire's with her. "Let's go shopping at Claire's? And can we get best friend jewelry? And let's go have churros after." Because Ella eats a little bit by mouth now. She learned to eat by mouth when she was about two and a half. So she can eat soft things and purees. And takes over, pushes me to the side so she can push the wheelchair through the mall. And look, there were people in Claire's kind of unaware. And here Poppy is, "Excuse me." I'm not worried about Poppy and Ella at all. They'll be fine.

Mary Baudoin (27:30):

That's adorable.

Maria Revere (27:31):

Oh yeah.

Mary Baudoin (27:31):

I love that.

Maria Revere (27:32):

But you see, kids, you just have to give them a positive example. We went to [inaudible 00:27:37] Park one time and she was in her walker playing in the sprinkler and a little girl came up to me, she said, "Your daughter is so pretty." I said, "Thank you, sweetie. You want to meet her? Yeah, this is Ella Grace." And I said, "She can't talk. She enjoys the water and wow, y'all have the same jellies." It's really easier than we make it. Adults make it harder than it really is.

Mary Baudoin (27:56):

I agree. Adults can be complicated sometimes.

Maria Revere (27:58):

It's not that complicated. "Oh, don't ask her. Don't bother her." Honey, you're not bothering me at all.

Mary Baudoin (28:02):

Right. I like it whenever children ask me about Lexi.

Maria Revere (28:05):

I love it. I never get tired of it. I love it. And that is how they learn, and that's the only way you're going to teach people to be tolerable.

Mary Baudoin (28:12):

Does she go to school or is she homeschooled?

Maria Revere (28:14):

She is actually a home bound. So she has providers through the school system that come and service her through. And they provide services through her IEP every winter. It's like clockwork. It just takes her longer to get over respiratory illnesses. However, it's the coolest thing because her allergist did some testing on her not that long ago and he said she's got a robust immune system. I have to think that's because we take her everywhere and she has brothers who bring home germs from school. It is what it is.

(28:46):

When she was little, before her heart was repaired, and before her pulmonary hypertension was resolved, I absolutely kept her in a bubble. Oh, a hundred percent. Now we just practice good hygiene like anybody else. Providers come in, you wash your hands. We do the same thing. I still have to remind my boys to wash hands before dinner. They're just kids. We don't live in fear. And if this COVID stuff comes back around again like it did last, I am not living in fear. I don't believe that is what the Lord wants us to do. Shutting off all our relationships. No, I'm not doing that. We're going to be smart and whatever happens, happens.

Mary Baudoin (29:20):

So you mentioned faith. How important is faith in your life?

Maria Revere (29:24):

Oh, it's number one. I love my family so much, so much, but I love the Lord the most. He's given me everything, the family I always dreamed of. If you can believe that. One thing I believe is a direct gift from God is that I never mourned the loss of Ella, who Ella could have been. I have never... And I still think, I'm like, "Is something wrong with me that I never?" Because I have friends who are still in that weird place of accepting the diagnosis, and it's hurting their feelings. It hurts them to see other little girls in gymnastics and dance going to the father daughter dances and getting married and walking down. It hurts them. It pains them dearly. When those are not things that we're going to have for our girls. I never had that, Mary, I never had. I believe it is an absolute gift.

(30:13):

I just love her for who she is. And listen, Sean and I don't worry about being ancient and old and having to care for her. We do not worry. We are not going to spend another day worrying about things we have no control over. God has given us everything we've ever need to take care of her. When there was a time, when there was a confusion with Medicaid and a confusion with insurance, almost as soon as it made me ill to think about the Lord provided it. I just have to believe she's a gift, and God's not going to leave us high and dry without giving us what we need for her, and bringing us, I prayed my prayers were that God would send us the right medical team who believed in Ella and I would have the wisdom to know who was going to promote her health and who was not on Team Ella.

Mary Baudoin (30:57):

When you have a child with [inaudible 00:31:00] that you do have to weed out on your medical team.

Maria Revere (31:03):

Yes, ma'am. Had to do it.

Mary Baudoin (31:04):

I've had to do that. I love where I'm at with Lexi now, especially this will be something you'll have to go through when she's 18, but from the pediatric specialist-

Maria Revere (31:14):

Yes, to adult.

Mary Baudoin (31:15):

... to adult when they're no longer able to see them because they've aged out, that's a difficult transition. It's doable.

Maria Revere (31:22):

We are so very fortunate. And I had to weed out a few, not a lot, but a few. It comes with being your child's voice, comes with being mama bear. I feel, and maybe it's because I was well into my thirties when I had children, but I feel like sometimes the younger mothers, they look at the medical providers as a position of authority and they feel bad for questioning, for asking questions, or they feel bad for having the courage to say, "I'm sorry you're not for us."

Mary Baudoin (31:55):

You can't.

Maria Revere (31:55):

Yeah, you got to get over that.

Mary Baudoin (31:56):

Yeah, absolutely. You have to learn. And like you said, because you have to be your child's advocate. You certainly don't want to be impolite to someone, but at the same time, I think that is something that we have to learn. And I think it was probably the mentality too for many, many years is don't argue with your doctor or-

Maria Revere (32:09):

Don't argue with your doctor. Yes. Be polite.

Mary Baudoin (32:14):

... don't talk back or whatever. I don't want to talk back in a rude way, but I can disagree with someone and still be very respectful. And then at some point I'm like, "Okay, you know what? We're not going to see this doctor anymore. We're going to go see a different one or we're going to get a second opinion or we're going to get a third opinion. Because I didn't like the second one so much."

Maria Revere (32:29):

Yeah. I had a specialist one time when Ella, she was going to be two, and he was very kind, and he was rather on the young side. He was very kind, very polite. I went to him for a medical opinion. I wanted you to explain to me certain things and let's talk about the mobility devices she was going to be needing. And he was giving me philosophical advice and he kept saying, "These children, your job is to take these children home and just love them and take care of them and snuggle." And I'm thinking to myself, "I'm her mom. Check. Got it. Been there, buddy. You're late to the party." And look, like I said, he wasn't rude. The office staff was nice, but I just did not think he was going to be very proactive. So I had to move on. Didn't go back.

Mary Baudoin (33:16):

Don't blame you. Don't blame you at all.

Maria Revere (33:18):

Yeah.

Mary Baudoin (33:18):

Okay. I have on my outline number three, which is cancer diagnosis.

Maria Revere (33:23):

Oh, boy.

Mary Baudoin (33:24):

No, right. And you haven't mentioned it up until this point. So is that something that you want to talk about?

Maria Revere (33:29):

Yeah, we can talk about that. It is crazy because I don't know.

Mary Baudoin (33:34):

When were you diagnosed?

Maria Revere (33:35):

Very... Not that long ago. I was diagnosed 2023, officially September 2023. So it hasn't even been a year.

Mary Baudoin (33:44):

Yeah, no, this is July.

Maria Revere (33:46):

Yeah, it hasn't even been a year. January of 2023, it was time for me to go to my annual health check with my OBGYN. And we did the full exam breast exams and then here's your papers to go get to get your mammogram. Did that. Within the week, everything, when I tell you everything came back clear, everything came back clear and solid. Fast-forward to May, okay, January to May. May, I'm putting on sunscreen in my bathroom to go to one of Remy's travel ball games. I rubbed, because I don't want to get skin cancer, so I rubbed sunscreen on my neck and I noticed my lymph node was large, and it was hard and I was not sick.

(34:28):

And when I tell you, I'm not kidding, when I tell you, I immediately knew this was going to be bad news because I knew that if your lymph nodes are swollen in your neck and you're not sick, you don't have the sniffles a fever, sore throat, nothing of the sort, there's something going on in there. It did not hurt. It was large and hard. And once I was wearing a tank top, and once I looked at it, I was like, "Ooh," compared to the other side, "that does not look good." But it didn't bother me in any way. I got in touch with my NP and she said, "Absolutely, come in, let me have a look." Well, you can't jump from, "Oh, I have the spot to a PET scan."

(35:09):

It doesn't work that way. You've got to go through the series of diagnostic. Insurance is just not going to allow it. She didn't like the way it looked. You go do an ultrasound, then do an MRI with contrast. Every time one of those came back, it was, they said there was something there, but it wasn't definitive. They didn't know what. Finally gets to the, all right, you need to have a biopsy. So I went to an ear, nose and throat doctor who biopsied it. Like I told you, I was absolutely prepared. So he comes back and says, now this was, I noticed it in May. All this doesn't go down until September. So I had to go through the progression. And I stayed online like a fiend. And when I tell you I was obsessed, I was obsessed because I-

Mary Baudoin (35:53):

Was that good or bad.

Maria Revere (35:55):

It wasn't healthy by any means.

Mary Baudoin (35:57):

Were you finding things that you didn't wish you found?

Maria Revere (36:00):

I was self-diagnosing myself with lymphoma. I thought I for sure had lymphoma, because I had no markers anywhere else in my body, and I wasn't sick. I was like, "Gosh, this thing is inside me. I know it's cancerous. All the diagnostics we have is not coming back. I know that that biopsy is going... To bottom line. It's going to prove whether it is or it isn't." So you have to go through all that before the biopsy. Do the biopsy. Doctor tells me within 24 hours, it was very quick, you have adenocarcinoma, which is cancer of the tissue, but we don't know where.

(36:33):

Because it's here doesn't mean it's lymphoma. So from there, we're going to scan your whole body and you're going to have a colonoscopy and an endoscopy because I do a PET scan. So I do the PET scan and it fires up hot in my chest, but also around my uterus too. I'm like, "Well, that was really scary because I thought for sure they were going to tell me I had breast and ovarian cancer." Did some more testing and that's when I had the upper GI and the colonoscopy. All of that was clear. Excellent. So now it's got to be somewhere in your chest because everything else in that area was great. It was perfect.

Mary Baudoin (37:13):

Let me ask you a question. Does cancer run in your family?

Maria Revere (37:16):

No. At this time I'm just like, I had really bad luck. The day, now I'm going to meet my oncologist for the first time in October, I'm laying in bed and I happen to graze my sternum, okay, my sternum. And that is when I feel, and you cannot mistake it, a hard, it feels like a bone is growing out of your chest, a hard nodule. And I went, "Oh my gosh, there it is. This has got to be it." It was on my left side, on my sternum, but close to the left side of my breast. And so I called my husband, I screamed and hollered.

(37:50):

It was almost like, "Oh, okay. We found it." So I, at the time, I was very devoted, and I still am, to Padre Pio, but I was getting signs like all the weeks coming up from Padre Pio here and there. I was getting so many signs. So I 100% attribute that random finding to a blessing from St. Padre Pio. Because what helped was I was able to go into the oncologist's office that day, meet him, say, "Look what I found." And he said, "See, these exams and self-exams are just as important as any diagnostic." It really is. And he honed right in on it, he said, "That is not normal," immediately.

Mary Baudoin (38:29):

So fast-forward, you go through treatments.

Maria Revere (38:33):

I was diagnosed with triple negative breast cancer, which means you're either hormone receptive or you're hormone negative. And I am negative. Hormone positive breast cancer, they know a lot more about it and it is a lot more treatable with a lower reoccurrence rate. I, of course have to have the triple negative, which up until about 10 years ago, they did not have a gold standard of care. They do now. Which includes chemotherapy and immunotherapy, surgery and radiation. I never for one minute, and listen, here's the weird thing about cancer. I thought they would encourage you one way or another to do surgery. From that day that I met, my shout-out to Dr. Pruitt, I love him and his family, that I met Dr. Pruitt. When I tell you I was swamped with a team. The very next day they were on the phone sending me to the breast center, doing mammograms, doing ultrasounds.

(39:31):

Then we're going to biopsy where the lump is as well. Meet a surgeon, have the talk. Surgeon, Dr. Martin says, "Are you thinking you want to do a lumpectomy, one breast removed or both?" And it didn't even cross my mind. Again, I think a gift from the Lord. I said, "Take them both." I want to be healthy. I need to live for my family. So I didn't cry over that either. Thank you, Jesus. I didn't. We didn't spend any time. And my husband, who is an absolute saint, this man has been with me every step of the way. And with Ella too. When I have to say he's a hands-on father to the boys, but even to Ella. And it can't be easy knowing. There are some things the two of them will not experience. He adores her.

(40:14):

And this man was by my side every step of the way, the good, the bad, the ugly, pushing me. "We are a team. Whatever you need, I'm here. You want to yell at me, you want to vent, you want to cry, you want to pretend in the river of denial, we'll do it. You want to go have a cocktail?" He was there for me and never made me feel like I was less than a woman or I somehow didn't meet up to the wife's standards because I'm broken. I'm sick. My stamina is down. I'm not doing everything. I don't look the same. I don't look like the woman he married. When I tell you this man loves me unconditionally. I am a blessed woman. I'm a blessed woman.

Mary Baudoin (40:57):

He sounds almost one of a kind, really.

Maria Revere (41:00):

He's a doll. I'm a blessed woman. I'm blessed to have his parents. I know I'm all over the place, but I want to jump back. One thing you reminded me when you need support for working with your child with disabilities, I will tell you, my mother-in-law jumped in from day one and learned how to feed Ella with the feeding tube.

Mary Baudoin (41:17):

Yay. That's amazing.

Maria Revere (41:19):

It is. Because it meant I could leave the house. You know what I mean?

Mary Baudoin (41:22):

Yeah. Because some people are a little scared of it.

Maria Revere (41:24):

They're terrified. She never batted an eye.

Mary Baudoin (41:28):

Before Lexi got a feeding tube, I was scared of, they're going through the surgery and I'm like, "Oh my God." But it was almost like when I had her for the first time, it's like, "She's my first baby. I've never had any younger siblings. Am I going to hold her right to the feeling of, am I going to screw this up with her feeding tube? I want to make sure I do it right." And then that fear just goes away almost instantly.

Maria Revere (41:50):

It's practice. Like anything else. It's practice.

Mary Baudoin (41:50):

Practice. Especially when it gets clogged. Coca-Cola works wonders. We all know this. But how... Is your cancer in remission?

Maria Revere (42:01):

I went through a scary episode in April when we found out that... We had some signs looking back that I wasn't... My cancer was responding well to the treatments, but Maria was not responding well to immune therapy. I myself was not doing well with Keytruda. Keytruda is the choice immune therapy that I was doing. It started with a terrible rash that, as you can still see, I still have... That might be with me forever. It was a sign and it was a knocking, and I ended up in the hospital for about 15 days in April with what they're now calling Keytruda induced autoimmune encephalitis. So I went in with an altered mental status. That's the first thing it took away. I didn't know I had children. I couldn't tell you my name. I didn't tell you where I was. I saw a myriad of people in the room that weren't there. It was ugly. I don't mind telling you, and I haven't... My dear friends who were there know this, but the public does not know that. I ended up in restraints. I had assaulted the staff. I was-

Mary Baudoin (43:02):

You weren't yourself.

Maria Revere (43:03):

No. I was on a ridiculous amount of steroids, enough for a 300 pound man. And that combined, I just had... I raged and I don't have any memory of this. So it was pretty humbling and mortifying at the same time when my mental state got better. And then the nurses, they come back around and they're all like, "Whoa, you look better. I like this version of Maria." And it was just apologies all around. Of course they understood. But I was mortified because I couldn't believe that I had done what I had done. And Sean said, "Yeah, it came to blows Maria. He's like, it was not fun walking in seeing you restrained."

Mary Baudoin (43:46):

No. He was probably like, "This isn't my wife."

Maria Revere (43:48):

No. He couldn't take me home. They told my husband, so here's another miracle in my family. They told my husband six months to a year in a rehabilitation facility if she gets out of here. Another miracle was that they were going to try to clean my system with Plasma Furesis. So they took my plasma out and gave me other people's plasma. So hey, to all of you who donate plasma, thank you.

Mary Baudoin (44:12):

Yeah, absolutely.

Maria Revere (44:12):

Because I used it.

Mary Baudoin (44:15):

Yes.

Maria Revere (44:16):

Yes. And the doctor told me, now this is when I have my mind back. And he told me, "We don't have a magic number. We're going to try. We don't know how you're going to respond." It's like chemo. You want a, they call it a positive response to chemo. You want a PRC, that's what it's called. I finally achieved a PRC with the plasmapheresis after three times. I only went to the lab three times to do this. It was amazing. Well, as my encephalitis is doing better, so we think, all of a sudden one day I can't swallow, I can't speak, and I can barely walk. I've lost all my functions. Now they're looking at my tropamine levels, which are off the roof, which is a protein in your body that your body makes when you've had a stroke or heart attack.

(44:59):

Now they're like, "We don't know what to do with her. Oh my gosh, get therapy in here immediately." But I will tell you, Mary, I had my thoughts in my head. And being that I had seen all the therapies go down in my house all those years, I was a teacher that did therapy. I said, "I'm going to have to rehab myself if I want to get out of here," because the hospital is not the place it was going to happen. They are so busy, they do not have the time to do intense therapy that I needed. So I looked forward to going to a rehab hospital. I knew I was going to be okay when I could remember my husband's cell phone number. Took the landline in the room, and I called him and he was like, "What are you doing? You called me." And I said, "I remembered your number."

Mary Baudoin (45:39):

Oh, that's nice.

Maria Revere (45:40):

He's like, "Oh my gosh, Maria." I said, "I'm going to be okay now." I was drooling and slurring my words, but he could understand me. And I was like, "Come see me." He's like, "Okay, I'm coming right now." As sick as I was, they scratched their heads. And I had one doctor, Dr. Cortez came in with the nurse and he pointed to me when I was... Learned to swallow again, I was talking, I was walking. He said, "You see that right there? That's nothing but God."

Mary Baudoin (46:02):

Divine intervention.

Maria Revere (46:03):

It was divine intervention. I had a lot of people praying for me.

Mary Baudoin (46:06):

Sounds like it.

Maria Revere (46:07):

Friends and family.

Mary Baudoin (46:08):

And it's worked.

Maria Revere (46:08):

Yes, ma'am. And I prayed a lot. I couldn't hold the rosary beads. They were too small. And I couldn't focus. But my friend Tracy had given me a beautiful rosary with big beads that was handmade. And so I had wrapped it around a teddy bear someone gave me, and I pointed and I prayed. I made a routine for myself in the hospital, and I got very comfortable there. I wasn't scared. I knew God was going to make me whole in one way or another.

Mary Baudoin (46:34):

Well, Maria, you certainly, not only is your family an inspiration, but you're an inspiration as well. I think, got a great bit of information here with the podcast, but I wanted to ask you, is there closing words or thoughts that you want to leave with our audience?

Maria Revere (46:49):

Oh, well, I would just like people to, who are expecting children or who are raising any child, just know, because a typical child can have an accident too, and your lives are changed drastically.

Mary Baudoin (47:01):

Just like that.

Maria Revere (47:03):

Just like that. So just to be grateful for every single moment you have. I bet if you looked around, you'd see more blessings than you would troubles. Change your mindset. And I'll be honest with you, I'm not a naturally optimistic person. My husband is. So he's been a positive influence on me. But it really matters. Surround yourself with people who are going to fill your cup. I am blessed that I don't have the situation where my friends come over or their kids come over and they ignore Ella grace. They acknowledge her, her presence. She's important. It makes a big deal to have your child acknowledged.

Mary Baudoin (47:41):

Definitely.

Maria Revere (47:42):

And even my mother lives with us too. She's lived with us for the past two years. She'll be 90 in September.

Mary Baudoin (47:47):

Shout out to mom.

Maria Revere (47:48):

Yeah, shout out, Lydia. And they do the same with her. Now, does she always know who they are? No. Can she hear very well? Not at all. But it's the human kindness. And fear, fear's a liar. I don't believe the Lord wants us to be fearful. Do what you got to do.

Mary Baudoin (48:05):

And I think that's the reason I put this podcast together is because there are stories out there that I want to uncover, to unveil, to inspire and enlighten. There are a lot of good things that do happen in the community. I think it's nice to shed some light on that, especially when someone is going through troubles, going through depression. And I know a lot about depression, trust me. But it's nice to hear hopeful things, and to be optimistic, or to just surround yourself with that positive energy.

Maria Revere (48:37):

If you think you can't do something, you're your harshest critic. Anything is possible. It's 2024. I thank God for the gift of science and medical advances, and those people who devote their life to all that education to help us. They're not doing that to hurt us. They're doing that to help us. How blessed are we to be living in that time? And you mentioned mental health. We know more now about mental health than we ever did. And the help is out there. It really is. Building those relationships. It was touch and go for me in the hospital at one time, and several priests came. And second time I saw my husband cry.

(49:19):

He was looking at me. He said, "Maria, they just don't know. They just don't know what's eating away at you and how to help. They're just not sure." He wanted an answer. I had a great bit of peace. I thought for sure I was telling him goodbye. But I had peace that I know my husband and children were going to be fine. Because I know who he is, but he's not alone. Like I had strategically placed supportive families and his own family in his life. Let your therapist do their craft. Let your physicians do good. Pray for the wisdom to know when maybe this is not a good fit. Nobody knows your child better than you. Give yourself and give yourself grace.

Mary Baudoin (50:00):

Well, Maria, thank you again for being here today. I'm just going to go ahead and close out the show.

Maria Revere (50:04):

Yes, ma'am. Thank you so much.

Mary Baudoin (50:05):

Sure. Thanks for listening to This Ability podcast. If you enjoy listening to our podcast, be sure to like our page on Facebook @thisabilitypodcast or subscribe to our YouTube channel. Goodbye everyone, and thank you for listening.