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Episode 63: Sarita Edwards - Trisomy 18
24 Plays14 days ago
In this moving episode, I speak with Sarita Edwards, a mother, advocate, and founder of the E.WE Foundation, about her family's journey after her son Elijah was diagnosed with Trisomy 18 (Edwards syndrome). Sarita shares the emotional rollercoaster of receiving Elijah’s diagnosis at 22 weeks pregnant, the constant message of hopelessness delivered by healthcare professionals, and the overwhelming fear of loss that followed. Sarita explains how she fought this fear with hope and love, sharing a strong message of resilience.
Elijah, now eight years old, defies all medical expectations. Sarita’s deep reflections explore how grief, uncertainty, and stigma transformed into purpose, acceptance, and connection. Through their journey, she and her family built a foundation to support other families navigating rare diagnoses, aiming to provide practical answers to questions that many face in times of uncertainty.
This episode is a powerful reminder of how lived experience changes lives, and how hardship can lead to a sense of purpose, and be turned into positive actions.
The song that Sarita chose is Even If by MercyMe.
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Transcript
Introduction to the Podcast and Guest
00:00:00
Speaker
Hi, I'm Sylvain Bertolo and you're listening to On One Condition, a podcast to raise awareness about health conditions by listening to people who live them every day. My guest today is Sarita Edwards and we're going to talk about her son Elijah and Trisomy 18, also known as Edwards Syndrome.
00:00:22
Speaker
Hi Sarita, thank you for joining me. How are you doing today? Hello. I'm excited to be here. I'm doing very well. Doing very well. Well, I'm excited too, because when we last spoke, I wanted to learn more.
00:00:38
Speaker
I will ask you a lot of questions I expect today. Okay. ah But starting with a song, because I love starting with a song. So which song did you choose and why?
00:00:51
Speaker
You know, the song that's most meaning meaningful to me when I think about this specific journey with Elijah is a song called Even If...
00:01:03
Speaker
um By Mercy Me. And that song is a song that really sustained me during during this journey we got our journey. We got our diagnosis when I was 22 weeks pregnant.
00:01:18
Speaker
And then I found myself on bed rest. And so I had a lot of time at home by myself. and And so I was in my thoughts a lot.
00:01:29
Speaker
And I am a Christian.
The Meaning of 'Even If...' by Mercy Me
00:01:32
Speaker
And this song talks about hope and it talks about, it talks about having belief in God and knowing that even when things are difficult or even when the outcome may not be, you know, what we want it to be, even if we don't have the strength really to get through whatever we may be going through, as long as we have that hope, that hope in Christ,
00:02:01
Speaker
we can we can make it to the end. So it it ends with it is well. It is well with my soul. And so it was something that just really kept me at peace just throughout that entire process. So yeah, that's that's a really good song. One that I think about
Finding Hope During Pregnancy
00:02:19
Speaker
often. And whenever I hear it now, I always remember that moment when it spoke to me. Yeah.
00:02:27
Speaker
So straight away, I'll hit you with a maybe ah a complex question to answer in a way. I hope you don't mind. Was hope important to you when you were 22 weeks pregnant and you had your son's diagnosis?
00:02:45
Speaker
You know, i hope was very important. And I think it was important because we weren't given any. You know, we were we were told that at any moment we could not have a heartbeat.
00:03:02
Speaker
And so, you know, hope is all hope is all i had. And and and even even when I tried to remain hopeful, it it felt like it just continued to be pulled and stripped away from me because the narrative from the health care system was the same, you know, at at any moment.
00:03:22
Speaker
this baby could die in the
Diagnosis of Trisomy 18
00:03:24
Speaker
womb. So, so hope was, yeah, it was very important because it was all I had, honestly, you know, for my own sanity for, you know, I was hopeful that this baby would make it to term.
00:03:37
Speaker
I was hopeful that my other children would be okay. So hope was very critical for, for, for me in that moment. yeah Yeah, I can imagine that. So talk to us about the that diagnosis at 22 weeks and and why you were told that your pregnancy could end early at any moment.
00:03:59
Speaker
Well, it it started really with just a routine ultrasound. You know, we were just at a normal, what we thought was a normal checkup, a prenatal checkup, and an ultrasound, you know, revealed some anomalies and The ultrasound tick in the doctor's office, you know, she was very talkative. And then at this particular visit, she wasn't.
00:04:23
Speaker
And so we really didn't know what was going on. She just she was just she was more attentive to what was on the screen. And so so we were just kind of waiting to see, like, h she's you know, she's just she's just not talking today. we we i don't even think I thought anything of it, but I noticed she wasn't as talkative.
00:04:45
Speaker
After the ultrasound, they sent us back to our room, and the doctor said, you know, that the ultrasound, it shows some some things that they wanted us to just get checked out. And so they decided that we should see maternal fetal medicine.
00:05:03
Speaker
and they connected us with with a doctor who actually commuted to the our area from a different city. So when when he was in the area, they got us an appointment. We went in to see him.
00:05:18
Speaker
And that's when he confirmed that that everything that they had seen in the office is something that he also saw. And so that that was the first time that we heard Edwards syndrome or trisomy 18. He used both terms, but that was the first time that we had we had heard that term.
00:05:39
Speaker
My OB b at the time, he never mentioned it.
Emotional Challenges and Family Impact
00:05:43
Speaker
you know He never said it, but I think that's why he wanted to send us to maternal fetal medicine so they could actually confirm it and everything.
00:05:52
Speaker
and And so we that's when that's when we learned what we were dealing with. and And he gave us this grotesque, if you will, he gave us this really harsh description of what we could expect. He you know he described all the things that was going on, everything that he saw, and term just physical attributes.
00:06:11
Speaker
And so we were we were very alarmed. And then we had to continue forward if if we so choose, and and we did choose to do so. so And did they at that time tell you that ah you were at risk of of losing Anija?
00:06:29
Speaker
They told us that you know what they saw was very critical and that there was a 95, 97% chance that he would not survive.
00:06:43
Speaker
And so they they immediately started to prepare us for him to pass away in utero. Okay. Wow. So they put you on bed rest straight away then, is that right?
00:06:56
Speaker
Well, I ended up on bed rest probably around 28 weeks, 29 weeks, but my because i my blood pressure started to just, it just elevated and it would not regulate.
00:07:11
Speaker
And so um because I started having hypertension, that's when they decided that I needed to be on bed rest. So i but I was probably about 28, 28 weeks or so when, when I ended up there. Yeah.
00:07:25
Speaker
So then until like waiting for ending your term essentially. Yeah. Yeah. Yeah. Just, yeah. I just, you know, I, I decided to initially, i I just decided to take some time off work and then I just, you know, later decided to just resign, you know, I did like a 30 day notice and,
00:07:45
Speaker
resigned, you know, cause you just, you don't know what you're dealing with. And so, and so I just, I finished my, I was never even able to go back to work to finish out my 30 days. You know, I, you know, you try to do everything proper and, and all the stuff, but a didn't have that opportunity. So I actually tried, I closed out my professional career on bed risk and I just waited. I just, I sat in, in the wait, you Yeah, well, so ah thankfully that diagnosis of 95 or 97% chance of of of death in utero was wrong, at least for you, so that that's very good.
00:08:34
Speaker
How did you leave it and is that something that still impacts you? Oh, goodness. Yeah. I'm going to try to keep it together here.
00:08:46
Speaker
ah and I think impact was, the impact was very, very hard because, you know, I had had four other babies.
00:09:00
Speaker
we We had miscarried before. And so so this experience was new. You know, it's it's it's one thing to make it to term with all of your children its it something completely different to miscarry.
00:09:19
Speaker
But, you know, but this experience was it was, it was not either one of those. And so it was just it was just completely different. And so i think I think the impact was challenging, to say the least, because I was trying to navigate
Understanding Trisomy 18 and Positive Outcomes
00:09:38
Speaker
The idea, because we we weren't we weren't in the moment, but I was still navigating the thoughts of what if we lose this baby? you know and and And then and what does that mean for my other children?
00:10:00
Speaker
Because we continue to have a heartbeat with him, the conversation went from he could die in utero to he could die during delivery.
00:10:12
Speaker
He can die shortly after birth. and so And so every time you feel like you've reached a milestone and you're safe, then another narrative comes. And so that expect, you know, the expectation of death is still ever present because it's the only conversation that you have. And so, you know, so you you you can't prepare yourself for we're in the clear because it never felt like we were. it was always a recurring, oh, well, you made it here, but still, you know, you can still be faced with this. And so i think I think the impact was just, I think it was just forever changing, you know, just from moment to moment, I could i could feel hopeful because it was a good doctor's visit. And then the very next doctor's visit, you know, i could,
00:11:09
Speaker
feel like we were starting all over again with getting the diagnosis. It was just like pulling the scalp off a wound is how I describe it. You know, it's just um sometimes you just pick at it and you may make it bleed a little bit. And sometimes you just rip that baby off and it just pours. and And that's just, that's how it felt. Some doctors visits, they were calm and pleasant. And sometimes,
00:11:36
Speaker
I hated to be there. i truly hated going. so So, yeah, the impact, it was it was always changing. It was just a roller coaster of emotions always. Yeah.
00:11:48
Speaker
Yeah. Yeah. So you have no opportunity to actually relax into what you're experiencing, what you're living. and at the same time, you need to carry on with life with your grown up children, or maybe not so grown up at the time, but yeah, that must be hard.
00:12:09
Speaker
And do you still have this fear or worry at the moment? You know, I think i think now my my perspective has shifted just a little bit. i think now i may still have moments where I have you know, a strong concern or, you know, a soft worry because, you know, because if Elijah is not feeling well or something, he he can't verbalize using words. And so, you know, um if if he's not feeling his best or if he starts to look like lethargic, I think automatically my mind goes to
00:12:53
Speaker
the what if scenarios, but I try to, you know, I just, I try to stay, I try to stay in front of it and just go back to my song.
00:13:04
Speaker
Yeah. Yeah. Yeah. I was just thinking about it actually, when you said what if scenarios. Yes. So
Elijah's Medical Journey
00:13:12
Speaker
could you tell us a bit more about Trisomy 18 and how it presents itself for Elijah? Yeah.
00:13:20
Speaker
Yeah, so trisomy 18 is when there is a third 18th chromosome on all of the cells in your body, or it could be on some of the cells in your body, or it could be on some of some of the cells in your body. And so there's a full, a partial, and a mosaic.
00:13:48
Speaker
Elijah has full trisomy eighteen So he has that third, 18th chromosome on every single cell in his body. um And so it, you know, it does a affect pretty much every organ.
00:14:02
Speaker
what we face day to day is not what we were told prenatally. ah Prenatally, we were told that he was missing three fourths of his brain, that his esophagus was offline, that his stomach was outside the cavity, um that he had VSD, he had a cystic kidney that wasn't working at all.
00:14:28
Speaker
that he had liver issues. He had, you know, bilateral cleft lip and palate, rocker bottom feet, low set ears. I mean, it was an extensive list of of issues. And after he was born,
00:14:45
Speaker
A cranial ultrasound revealed that all of his brain was there. He did have the VSD with his heart, but it resolved itself or just discharged us.
00:14:58
Speaker
You know, he does have liver issues, kidney issues and different things like that. And so a lot of what they said is present, just not to the extent that they described it prenatally. And so we we do have a medical team of about Total about 23 specialists, but a lot of them, you know, they have been so pleased with how Elijah performs and how he's doing to where, you know, we slowly transition from going every three months to every six months to some of them we're going annually. Some of them, they've said, you know, you know, you don't have to come for two, three years at a time. And so it really just, you know, depends. And so, you know, I would say in terms of what Trisomy 18 is doing for Elijah, to Elijah, no one really knows.
00:15:55
Speaker
You know, our our medical team, I think there's some level of fascination because because he's doing so well. With this diagnosis, we've had two genetic tests to confirm because he was doing so well. They wanted to retest him, um what which was funny because when he was born, we were refused testing. You know, we asked for testing to confirm and and we were... Really?
00:16:20
Speaker
Yeah, we were told that he looked consistent with what we had already been told prenatally and that confirmatory testing wasn't necessary. but But because he's done so well,
00:16:32
Speaker
Two tests were actually offered to us. And so so so he's had two tests to confirm that he does, in fact, have it. But he's he's doing really, really good, all things considering. You know, with with what we know about this condition, what the science says about this condition,
00:16:53
Speaker
the geneticist says that he's an anomaly, you know, that he is so far off the g grid of of how his body is responding to it. And so we're just we're just grateful. Yeah.
00:17:04
Speaker
Yeah. Yeah. That's amazing. And you you mentioned visits every three months or one year and so on, but it's with multiple specialists. How often do you have to go to the hospital?
00:17:17
Speaker
Now we're only going um annually. and we're going probably to see everybody over the course of the year. we may have 15 to 20 appointments a year.
00:17:34
Speaker
And that's just that's just me guesstimating. Yeah. You know, so probably 15 or 20. And and we do have to commute. Right at two hours one way, um because we don't have a lot of pediatric specialists here in where I live. I mean, we do have pediatric doctors, but when it comes to specialty care, you know, we go to the children's hospital and we we have a local pediatrician here.
00:18:02
Speaker
And then we have one or two specialists here. that help us with like specific things, you know, like mobility with durable medical equipment and all the things. It just made sense to try to find somebody local when it comes to like a wheelchair and a gait trainer and all that kind of stuff.
00:18:21
Speaker
But all of our other specialists and medical team, they're at the Children's Hospital, which is right at two hours away from where
Progress in Education and Communication
00:18:28
Speaker
we live. Yeah. Wow, so it's a lot to do then. Big commitment.
00:18:35
Speaker
How old is Elijah now? Elijah is eight years old. we so We celebrated his eighth birthday in March of this year. Yeah, he's eight years old. Yeah.
00:18:47
Speaker
And what kind of support do you get? ah Do you get support at home, for example? ah Does he go to school or or are you full-time caring for him?
00:19:01
Speaker
Well, he actually, he goes to school in our public school system. you know I reached out to them when we learned that through the early intervention program, you can transition to the public school system.
00:19:17
Speaker
and And we didn't have early intervention. Elijah spent the first seven months of his life in hospice care. And so we we didn't learn about early intervention until he was two years old. And you age out of it at three.
00:19:33
Speaker
Well, so we we got that one year and they connected us with the school system. And honestly, I sent them an email and, you know, i I told them about Elijah. I asked for an opportunity to share him with them because I was afraid that if they looked up the diagnosis that they wouldn't accept him.
00:19:56
Speaker
We have been refused health care. because of a diagnos because of his diagnosis. like We've had doctors tell us it's not worth the medical resources. Well, if he didn't have trisomy 18, maybe we would do this or this, but because you know we've had those conversations, and so I was afraid that the school would do the same thing. So so I reached out ahead of time, and they let us come in and talk about his diagnosis, and
00:20:27
Speaker
It ended up being a great experience. And I started, you know, taking him to different events at the school. You know, if I was going with the other kids and we were already heavily involved in community stuff. And so I just started taking him more and more to different things just so people could see him.
00:20:46
Speaker
And then too, you know i I did that for myself because getting started on this journey, I kept him so protective. I think I was just so afraid that that at any moment he could die that I just, I guarded him you know from everybody, even the other children.
00:21:06
Speaker
and and And then I just, I realized that I was doing everybody a disservice. you know I'm doing this Elijah disservice. I'm doing the other kids a disservice. I'm doing myself a disservice by just by being so fearful.
00:21:19
Speaker
And, and so I just, I changed my perspective and I was, you know, I just, I just started taking him everywhere and letting people interact with him. And, and then he transitioned to school and it was great.
00:21:33
Speaker
So much better than, you know, being at home with me every day, even though I had walked away from my career, I didn't want him to miss opportunities to be around other children. And, you know, I wanted him to experience that. And so Monday through Friday, Elijah, he goes to school and he is doing so well. It was a good thing for him. He's grown socially.
00:22:01
Speaker
His communication, I i I know that they have given him so much more than I could just here at the house. Like they're they're giving him learning tools and tactics and things that I never would have thought to do So so that's that's what he does all day. you know i am still...
00:22:22
Speaker
a full-time caregiver. I did not go back to the corporate healthcare space, which is what, you know, what I did. um i did not go back to to work full-time. We started a nonprofit and I spend my day running the nonprofit and helping other families like ours. And so that's that's what I do every day. My husband still works, you know, a full-time corporate job. And so, yeah, that's how we juggle it all.
00:22:50
Speaker
Yeah. Wow. I'm always impressed by how much people who like you do, because it's a lot of of work and and a lot of wrote on your mind as well. if Imagine if when Elijah is at school, you must have so much on your mind.
00:23:10
Speaker
How do you communicate with Elijah, considering he's non-verbal? Well, you know, he has he has sounds and he has different cues. You know, he will clap if he's trying to get your attention. If you're not if you're not paying attention enough, he may he may clap or he may elevate his voice. And and he'll do this little, you know, to let you know, I'm trying to get your attention.
00:23:36
Speaker
So he he has these little sounds and different gestures that he'll do. he's He's actually right now being evaluated for an eye gaze communication device.
00:23:50
Speaker
Oh, wow. He was he you know, the school, they started kind of just testing some things using like an iPad and an app that they downloaded to the iPad.
00:24:02
Speaker
And they said, you know, he's doing really good with this. You know, maybe we should look at if there's a communication device or something that he can use. They connected us or they recommended we we go through the same organization who helps us with his wheelchair.
00:24:19
Speaker
And so we we did and went in for an evaluation and Right now, we're thinking the eye gaze is what's going to be the most effective for him.
00:24:32
Speaker
And he did so well. i was fascinated. Even the speech language pathologist who evaluated him, she said, I got to tell you, I am very impressed with how he used this device. And so we're going now to phase two.
00:24:53
Speaker
And that's to get a device, of what they're calling loaner device. And we we use it over the course of several weeks to see how he communicates with it.
00:25:03
Speaker
And the school will help with that evaluation. Our you know speech language pathologist and all the people, we have an amazing team of people helping us with it. And then if he does well with that, we will move forward with actually getting him his own that he can use at school, here at home.
Shifting Perspectives on Life
00:25:23
Speaker
And so hopefully we'll start using that to help him with more communication. that sounds That sounds incredible. I'm so impressed with like how innovation really helps in those situations.
00:25:38
Speaker
Yeah. Will the device help him say words? How do you expect the device to communicate with you and the device and the Asia to use it? You know, I think from from what we from what we're learning, we can program the device to respond to Elijah's eye movements.
00:26:00
Speaker
And he can he can say, you know, if he if he wants a drink of water, he can he can use his eyes to go to that thing on the device to say, cup, please, or whatever we program it to say.
00:26:17
Speaker
And then we'll know, oh, he wants his cup and we can give him his cup to drink, you know, to drink water. The functionality of it is so massive. you can You can literally program these things to do everything. You know, we we've even talked about the first time he uses his eyes to say, hi, mom, or hi dad.
00:26:42
Speaker
Listen, i'm just I already know I'm just going to be wreck. I just am. yeah we can yeah It actually can do everything. It's amazing.
00:26:55
Speaker
i had never seen one before until his evaluation. it It's amazing what it can do. yeah I love this.
00:27:06
Speaker
Oh, it makes me happy, like really. Hearing you explain this, that yeah i can so imagine how will change things for you and Elijah. It's incredible.
00:27:19
Speaker
So I'd like to go back to... Something you said earlier, obviously we talked a lot about hope to start with and that you've shifted your your thinking about Elijah's lifespan in a way and the risk for him.
00:27:40
Speaker
How did you do that? You know, i think for me, instead of being afraid,
Intentional Living and Family Support
00:27:51
Speaker
that any day he could die, I started thinking about the reality that any day any of us could die.
00:28:02
Speaker
I don't think about that for myself. I don't think about that for my other children. but But that same reality is there. And so why am I so strongly focused on it for just Elijah? Right.
00:28:19
Speaker
and it's And it's because they force fed this diagnosis to me and the way that they explained it to me, it brought so much fear that all I think about is any day, any day. And so for me, I just started thinking, instead of thinking that any day he could die, every day I wake up expecting him to be alive.
00:28:47
Speaker
And so i just I just changed my own perspective and and I made my own thoughts about it more healthy. I made my own thoughts about it, you know, how I think about my other kids. Like I don't find myself consumed by at any moment.
00:29:07
Speaker
And it's still difficult sometimes, but I just, I i try not to let myself wallow in that. the diagnosis, because it's knowing that the diagnosis is present that's bringing the fear.
00:29:20
Speaker
And so I just needed to take charge of that. No, know the diagnosis is present, but look at how well he's doing. you know look at Look at how he's progressing. He has already passed every single prognosis that they've given you.
00:29:37
Speaker
Don't let yourself live in worry. and and And it honestly was just me talking to myself and And just remembering that if I truly am resting in hope, rest in hope and not in what I've been told this diagnosis is, you know, like truly, truly resting the hope.
00:29:59
Speaker
and And that's where, yeah, that's kind of how I have to shift my my thinking, even when it comes up now, you know, because it's still present from time to time. But, you know, I just try to take charge of it. And because, man, you can.
00:30:14
Speaker
find yourself in a rabbit hole. Well, yes, yes. But I can imagine that it's difficult to get out of that rabbit hole. Yeah. but So do you think it has changed your perspective, not only regarding Elijah, but on life in general?
00:30:34
Speaker
Oh, absolutely. i think I think it truly has. I think you know i think I'm more intentional I'm more intentional with with everything. i truly do try to find joy in all things.
00:30:48
Speaker
You know, I better appreciate time and the reality that it's something that I think we that we take for granted because we we expect to have a lot of it.
00:31:00
Speaker
And it's it's truly changed just how I approach life, my own life, how I approach, you know, interactions with my kids. And I was very, very protective of my feelings and my emotions and my vulnerability. Yeah, that all went out the window with Elijah.
00:31:21
Speaker
You know, it did. I like I'm OK with with not being OK. and I'm OK, you know, letting people know, you know, if you if you see me cry, for example, I'm OK with saying.
00:31:38
Speaker
So let me tell you what these tears are, because I don't want people to assume I want I want people to know these tears are because I'm remembering where we were.
00:31:50
Speaker
And I'm remembering and seeing where we are. And so these are tears of gratitude. Or, you know, I'm remembering how angry I was in that moment. And and and I'm just, I don't know. It's just, it's made me more intentional um about everything.
00:32:07
Speaker
It truly, truly has. Yeah, so, and and I think it's brought us together as a family because realized that truly even when you have a support system, all you really have is each other. And you can have a ton of people with similar experiences and all the stuff, but your feelings are your feelings and nobody can pull those away from you. And so we, you know, we, we empower our children to
00:32:40
Speaker
OK, so how are you feeling? OK, rest in that, rest in that for just a minute. Like, let yourself feel it. Don't try to don't try to not feel whatever that is you're feeling. Let yourself feel it.
00:32:53
Speaker
What is that doing to you? right. Now let's let's process it. all right, let's talk about it. Okay. So then now how do we move forward? You know, cause I think before it was just a dismissive, like you're, you're okay. It's going to be fine. But now, no, now it's a, let me, let me live in this feeling for just a minute and, and let myself have, have the emotions, let myself be angry, like whatever it is, let myself feel it.
00:33:23
Speaker
It's completely changed me as an individual. It truly has.
Founding of E.W.E. Foundation
00:33:28
Speaker
Yeah. Wow, that's amazing. A lot of wisdom.
00:33:35
Speaker
It is ah yeah very, very interesting. And I completely get why and how it could change you for dealing with situations in a better way.
00:33:50
Speaker
You mentioned your a foundation that you you created. ah Could you tell us a bit more about that, please? Yeah. So the E.W.E. Foundation, E.W.E. stands for Elijah Wayne Edwards.
00:34:06
Speaker
E.W.E. actually came from my husband. The first time the kids were coming to see us at the hospital, he was trying to figure out a way to soften what they were going to see when they got there, because Elijah was born with bilateral cluff lip and palate.
00:34:24
Speaker
And so he he didn't want them to be shocked or afraid or embarrassed or anything when they saw Elijah's face open. And so he said, I mean, he looks like a little iwi.
00:34:38
Speaker
I mean, we we're going to call him iwi. He looks like a little iwi. It's just the cutest little thing. And so he kind of he kind of prepared them to to see something different, but not be afraid of it.
00:34:52
Speaker
And so EWI, it just, it it stuck for a little bit. You know, I had some family that called them EWI for a little bit. And we we've talked about starting a foundation really thinking we were going to provide bereavement support.
00:35:08
Speaker
and And it just made sense to call it the EWI Foundation. I think because that was the narrative that we got the most, that, you know, he would die at any moment, we wanted to help um families navigate that journey. and And we reached out to our life insurance company and asked them, you know what are the parameters if we find ourselves in this situation? And we learned that Elijah would have had to live six months in order for them to to pay bereavement or funeral expenses or anything.
00:35:43
Speaker
And so that made me, I just started blind calling, cold calling other companies to see what their policies were And I only found one that said if the baby lived 14 days, but I did not find anybody that would cover immediately for funeral expenses for a baby who was born alive, but died within the first hours of life, 14 days of life. And so so we were thinking, how do we you know how can we remove some of the burden off of families in a situation like ours?
00:36:18
Speaker
Well, then Elijah, he continued to live and he literally changed the blueprint of everything that we did. And so it it it went from being bereavement support to being opportunities to raise awareness and education and and who you know who provides the most support, you know social workers, nurses, when it comes to resources and information. And so we became a continuing education provider to incentivize them from coming to our workshops and different things like that. And we have our mental health program because we do know the realities that come with a diagnosis. And we end of life solutions because we know that not all babies will have outcomes like Elijah. A lot of babies will die.
00:37:11
Speaker
you know, as expected. So we do have that end of life. And then we also have a financial assistance program, just understanding the financial burden that comes with navigating a diagnosis like this. You know, we we ourselves went from two healthy incomes to one.
00:37:31
Speaker
and so that was, you know, that was a huge transition for us. And so we wanted to be able to kind of you know, help with some economic assistance if for a family who may be in that transition window, or they may be struggling to, you know, pay their mortgage or their rent, a utility bill. We've paid for things like items that insurance companies wouldn't cover the cost for, or they only covered a portion of the cost. And so we just continue to grow and thrive. And we started out thinking we would be
00:38:03
Speaker
a local organization. And honestly, we we have provided support to families all over the world. I don't think we intended for it to grow. We didn't want families to have the experience that we had. And so we just, we wanted to help people understand and and learn, if you will, how to be an advocate. How do you advocate for yourself? You know, don't don't waste time complaining about, you know, what happened or what didn't happen. be an advocate, take those opportunities to to change perspectives. And that starts with changing perspectives.
00:38:39
Speaker
the narrative, like don't go in talking about the same stuff everybody else is talking about. and Unless that's, you know, unless that's the space we need to be in in, but like don't miss opportunities because that's something that we were, that we were seeing ah a lot of families. They were just, you know, they were complaining about what the doctors did not do. And, and we can relate to that because that was a space that we were in too, but that didn't get us anywhere.
00:39:03
Speaker
It wasn't until we truly learned advocacy, that we started getting things done. And honestly, you know, we had to find a medical champion to help support the conversations that we wanted to have. And when we did, you know, we were we were all in. And so a lot of the work at the foundation is really to, you know, raise awareness, provide education, provide economic assistance, and help families just navigate the mental health aspects of a rare condition like trisomy
Elijah's Happy Place
00:39:35
Speaker
18. So, yeah.
00:39:37
Speaker
That's amazing. It sounds very practical and that's what people need because you need to know, i think you've said that, you need to know how to navigate the system ah so that in a way you don't start from scratch, you start from someone who's been there before and and who can help you in that journey, which is always no matter much support you have around you, it's it's ah it's a tough journey to be on.
00:40:09
Speaker
It is. Well, Sarita, unfortunately, it's all we've got time for today. But I have one last question that I want to ask you.
00:40:20
Speaker
What is Elijah's happy place, the place where he feels at peace? Oh, man. I would say Elijah's happy place is...
00:40:34
Speaker
Oh, I'm going to be biased and say it's it' snuggling it's snuggling under me. I think that's his happy place. I mean, he he loves to snuggle with dad. He loves to snuggle with his siblings. he He has this thing where he will he will take his head away.
00:40:53
Speaker
and he will rest it right at your shoulder, but his face touches your neck. it's I don't know if it's just a sensory thing, but he seems to be in such a happy, peaceful place.
00:41:11
Speaker
When he does that, you can just see the smile on his face. It's just, I don't know, it's just, it's joyfulness, and it's It's safety is what it feels like.
00:41:22
Speaker
It's like it's safety for him. And so I would say his happy place is a really good snuggle with, I'm going to say mom, but but but I think he'll snuggle with my husband and the other kids too. But if I come in the room, I could probably steal him from one of them. Yeah.
00:41:44
Speaker
It's okay. We won't tell anyone. Right.
00:41:48
Speaker
Oh, thank you so much, Sarita, for your time. i will be completely honest with you. I started my day not feeling that I wanted to start the day.
00:42:00
Speaker
I wanted to go back to bed this morning, but you've completely changed my mood. It's been so nice talking to you. So thank you for that.
00:42:12
Speaker
Thank you. But also thank you for all the work you're doing through the foundation for raising awareness. it I know it takes a lot of time and I know it takes a lot of effort. So it's amazing what you're doing.
00:42:25
Speaker
Thank you. I appreciate that so much. Thank you. Thank you for having me on. Well, it's been a pleasure. Thank you.