In this emotional episode, Tara, Sofia’s mother, shares their journey. From Sofia’s healthy birth to the virus that altered her life forever, Tara discusses the challenges of raising a child with special needs. Tragically, Sofia passed away at seven years old in 2019, leaving Tara to navigate life without her beloved daughter. Join us as Tara opens up about grief, resilience, and finding hope in the face of profound loss.

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SPECIAL THANKS TO OUR SPONSOR: Adirondack Trust Company

• Website: https://www.adirondacktrust.com/
• Saratogian article on the opening of the time capsule: https://www.saratogian.com/2016/06/28/adirondack-trust-company-opens-100-year-old-time-capsule/
• Video of The 1916 Time Capsule being opened: https://www.youtube.com/watch?v=ohyNnTw1_TE

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FIND HEATHER & JAKE’S HELP FROM HEAVEN ⬇️

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Keep scrolling for the episode transcript. 

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*Disclaimer: This is an automated transcript. Please excuse spelling and grammar errors.  

Tara  0:05  

She didn’t sign up to be a special needs kid. She didn’t raise your hand say pick me. So I felt like that as her mother, I had to give her the life that she deserved. And I would find a way to make it happen. And if I couldn’t I tweak it, or, you know, do whatever I could.

Heather Straughter  0:22  

Welcome to a place of yes, I’m your host, Heather strutture. A podcast about how I moved through my darkest hour. And all I can say is I dug deep, figured out where I was in where I wanted to be. And for me, the answer was in a place of Welcome to the show. But first, it’s time for our review of the week. This is a review from Apple podcast. May this touch the hearts and souls of listeners, and remind us all to be grateful for our many blessings, very powerful to hear firsthand how these folks chose to make their most painful and tragic loss into serving others in need. excited to hear more. What I loved about that review is that it talks about the reminder to be grateful for our blessings. And it’s something that you would think that I do all the time, but I but I don’t. And we all have to remember whether we’ve suffered loss or not to just be grateful for what we have in the people that are in our lives, and to truly see the good and not just focus on the bad. Today, I’m super excited. I’m sitting here with parap, otherwise known as Sofia’s mom, Tara and I have known each other we just realized for 10 years, part of what I do sometimes when I prep for the show is I look back from the beginning. And I see the things and the way, you know how we got to know each other, which was through Jake’s help from heaven, but also just the journey that we’ve been on. I loved seeing some pictures of Sophia that I had forgotten about because I remember Sophia at a certain age very vividly. But I didn’t remember baby Sophia. And I have to say I had a little bit of a moment today, when I was looking at some of those pictures. So Tara, can you share with the audience? Can you talk about how we met, and how you even heard about Jake’s help from heaven?

 

Tara  2:10  

So I heard from my case manager or social worker when Sophia was in early intervention, so they provided somebody to us. And I remember talking about like bills and financial stuff, and about how could I afford all this for Sophia? And I remember she said to me, have you heard of Jake’s help from heaven? And I said, No, what is and I remember she gave me paperwork on it. And I remember reading your story. And when I read it, I was like, Okay, this could change our lives, or this could help us. So

 

Heather Straughter  2:41  

for those who don’t know, Jake’s hail from Heaven is an organization that my husband and I started after the passing of our four year old son Jake. So Jake was born healthy, but had a lot of medical challenges. And we learned over the course of his short life, just how challenging those issues could be right and how expensive they are and how you are just constantly jumping through hoops. And after he passed, we wanted an organization that would just make things easier, ease the burden for families that were like ours. So talk about Sophia. So

 

Tara  3:13  

Sophia was born typical. And then around six months, Sophia got what we thought was the stomach bug. A pediatrician sent us to the ER and the next 24 hours completely changed our lives. Sophia had her first seizure in the hospital. And from there, we did test and found out that she had a virus that crossed her brain barrier and damage the right side of her brain. Four weeks later, she had developed three movement disorders into one and at the time, Sophia was the youngest child in the world to be diagnosed with what she had. And for anybody that wants to know her diagnosis was called anti NMDA receptor encephalitis. And there is actually an article written about Sophia, in the book of neurology, I’ll be met, I

 

Heather Straughter  3:59  

had forgotten about that being another similarity of us that we had children born temperately Typical. So Sophia was six month, Jake was eight month. So let me ask you this question. Jake. Never had a diagnosis. I remember. And people often asked me like, are you okay with that? And, you know, what am I gonna say? Sometimes I we had a diagnosis, but it is what it is right? Like, you know, we had great doctors, he was working with a geneticist, and I always reference early on in our hospital stay. There was a doctor that said, you know, the things we’re testing for, you don’t want to have so it was fine. We knew how to treat some of the things that were happening with Jake and we just kind of went with it. Did you find having a diagnosis helpful?

 

Tara  4:41  

I think in that moment, I guess you want to know what’s wrong with your kid

 

Heather Straughter  4:44  

did and did you find that out relatively quick? No. Okay. So we spent

 

Tara  4:48  

72 days in the intensive care unit, and by the end, a doctor from Spain actually reached out to Rod neurologist and that’s how we were able to do a test which is the Spinal Tap And then the results came back. And basically they told us what we had by that point, the damage was already deaths. And I remember her doctor looking at me and saying, You need to grieve the baby that you had because this is now your new child. And I had to the course of treatment was chemotherapy for six months. And then after that we were going to adapt as a family with a special needs child.

 

Heather Straughter  5:20  

So interesting that you had a neurologist that said that, you know, that process came to me a little bit on my own sort of overtime, like kind of, or maybe reading in a support group or something. But I think that’s a very real thing. Did you do that at the time, like, you know, kind of grieve the loss of your typical child.

 

Tara  5:38  

It was kind of like, no, fix my baby, bring her back. And I remember them looking at me and saying, We can’t and you need to accept that. And I think as life went on, and I adapted as you know, Sofia’s mom, I was like, okay, there right now, this is what’s in front of me.

 

Heather Straughter  5:54  

I fought it for a long time to I like fought it because there was a part of me and I wonder if you feel the same way. There was a part of me that felt like it was disrespectful to Jake right, like, because I didn’t want to be like, Oh, you’re not good enough. Like, just because you’re not the way I thought you were gonna be. And I get myself kind of still even can get myself like a little weird about that. Because I want him to know that he was enough, right like that, you know? No, it wasn’t the way we thought it was gonna be. But doesn’t mean it was bad. It just was what it was. But I do think there is value in that idea of taking that moment, right and validating for ourselves. And as I’ve gotten older, I think it’s a huge piece of sort of coming to terms, right, when you know what we thought life was gonna be one way and it turned out to be another. Okay, so now let’s walk through it a little bit. So you are now adapting to sort of life with a special needs child, you guys are a family of three, that has the stress like of

 

Tara  6:44  

it, it was it was there. And you know, and I wouldn’t want to lie and say that, you know, life was just great. And we figured it out. Because it wasn’t. And I chose to stay home. And I would take care of her during the day. And you know, her dad would help. And I would go and work overnight, three days a week to help financially. But there was stress because Sophia had other issues that doctors couldn’t figure out. And to this day, we still don’t know those issues. And some days were hard.

 

Heather Straughter  7:11  

So in addition to her kind of primary diagnosis, and like there were other there

 

Tara  7:15  

were other diagnosis. So she had multiple ones. And a lot of them, they couldn’t explain why. And medication didn’t work. And there were days when we had to deal with it for hours on end. And we just had to

 

Heather Straughter  7:27  

get through it. There were long days. But there were also these like great moments, right. And I think sometimes people would look at kids like Jake or Sophia and make their own judgments and not recognize the life that they had. Well, they couldn’t communicate in the sort of typical way. Like I’m sure Sofia let you know. Oh,

 

Tara  7:48  

oh, yes, she did.

 

Heather Straughter  7:50  

Can you talk a little bit about that like and how when you were home with her, like, what were your days look like?

 

Tara  7:56  

Oh, God, I used to look forward to Fridays because it was like, I didn’t have work Friday night. And I remember just being in jammies all day with her. And we’d pick a movie, I say we but really me. And we would sit there and I would give her like a little bit of ice cream on a spoon and we’d be up past bedtime and or there’d be days when I would give her the spa treatment of a bath. And you know, it was difficult to do that. But it was like she got the treatment. Yeah, and the nails pain and then the hair blow drying. And it was like the works. And like, I valued that time with her because like you said it was at one on one time when there was no hospital. No nurses, nobody else in the house with you.

 

Heather Straughter  8:34  

You know, we take that time for granted for sure. But in the lives of kids like Jake and Sophia, there are those hospital visits that are longer or the doctor’s visits or all of the things that just can be overwhelming. Yeah. So let’s go back. Do you remember the first thing that Jake’s home from Heaven did for Sophia? The very first thing? No, what is it? So we brought a yogi bow? Oh, her yoke. And I’ve heard that was the very first thing and you

 

Tara  9:02  

want to know something funny is that my oldest niece wanted one so bad because Sophia had one. And like the kids thought it was so cool. But I’m like, No, this is what we use it for, you know, because we didn’t want her to fall out of any exactly because he didn’t plan to right. Yeah, my oldest niece was 14 still has her Yoky boat because Sophia had one.

 

Heather Straughter  9:19  

Yogi because you know, obviously exist. They’re not a special needs thing. But a lot of Jake’s families once we found out about Yogi bows, and when someone started getting one, and we would post on our social media would see it other families were like this is brilliant, like because they could be safe and it wasn’t always sitting in the chair that is very supportive. It was just a way for them to relax and be safe. At one

 

Tara  9:41  

point. Sofia had a sore and her tailbone and I remember being like what can we put her in? That’s not that pressure. Yeah, the pressure points the pressure points and it was because she was so skinny at that point. We couldn’t figure out her diet but I remember putting her in that Yogi bow and it was just like comfort for her and she sat in it and it like kind

 

Heather Straughter  9:58  

of formed around yeah, it’s So it’s funny, we went through a period where we were purchasing a ton of yoga bows. And Ethan was like eight or nine years old. He was kind of like, why can’t I have one? Like, why are you buying them for all these other kids, I want one. And eventually one of his birthdays. We got him one. And he still has it in his room, which is kind of funny. But it’s funny. They said, You’re nice. Like, they’re, those are cool items.

 

Tara  10:19  

I think they’re great. And like you said, they’re not designed or, you know, for special needs kids, but it works. So

 

Heather Straughter  10:24  

we started with like Yogi Bose. And then we did one of the other things that I had forgotten that we did. But we did that bike trailer, it

 

Tara  10:31  

was my favorite. Because when Sophia got granted and make a wish, we went to the ocean for the first time. And I remember Jeff and I were so excited that we got mountain bikes and to clip it on there, and to go up and down the street near the ocean. And just, it was one of my favorite things, because I felt like she got to be a typical kid.

 

Heather Straughter  10:51  

Like I said, I had forgotten about till I kind of looked at it. And then as soon as I saw it written down, I remembered a picture you sent me, which was exactly that on your trip. And clipped in. And you guys just having that moment. Yeah. One of the things I love about you, and the life you gave Sophia, you fought so hard to give her that life, right like and well, it might not have been that life that you thought you were having for the first six months when she was typical. You gave her these experiences of just being a kid. I love that, because that’s what we tried to do with Jake. And I think you can you can treat this life one of two ways, right? And I’m not passing judgment on how anyone chooses to do it. But you can, you can choose to take it and try and make it as your kids a kid and just has extra, or you can be really locked in on keeping you know, just the medical piece. And there’s nothing wrong with that you had her on a baseball team or a softball team. It’s

 

Tara  11:51  

out of East Greenbush. Okay, okay. Well, the miracle League. So the miracle League, it is an organization for special needs kids and adults to be able to play sports. And Sophia got to be a part of that. And she actually did baseball for three years in a row. And then she actually got to be a part of a cheerleading team. And to see those kids smile, and to be a kid was what I aimed for. That meant going all the way to East Greenbush and packing up the car. I did, if that meant put in seven layers of sunblock on her skin so she can sit out there and be a part of a team. I did. I saw Joy, I saw her smile. And that made me feel like I was doing something right.

 

Heather Straughter  12:30  

You were doing so much right? You know, we work with a lot of families at Jakes. And I develop relationships with a lot of them, right, because we do have this common thread. But there’s a handful that I just have such respect for, like how you were able to parent your child. And I’ve said this before, like when Jake was little. And when he was sick, the world seemed much smaller, right? There wasn’t as much social media, there wasn’t an organization that I knew of, like Jake’s on from heaven, like I didn’t have connections with people. But I love this connection with other families that were families like ours, you know, and who have really just made such an effort to, I hate to say normalize, but certainly normalize childhood,

 

Tara  13:10  

I feel like a switch went off with me. And it was either like you said you can go down this path or you can go down the opposite path. And to me it was to give Sophia the life that she deserved because if you think about it, she didn’t sign up to be a special needs kid. She didn’t raise her hand say pick me. Yeah. So I felt like that as her mother. I had to give her the life that she deserved. And I would find a way to make it happen. And if I couldn’t I tweak it or, you know, do whatever I could. That reminded

 

Heather Straughter  13:36  

me I think one time we got to swing or something, right.

 

Tara  13:40  

So somebody did a fundraiser for a swing. And then we realized that we had no frame. And I was like, I can’t remember. Yeah, it was swing but no frame and how am I going? I remember reaching out to you and being like, I just need a frame like, Okay, that’s it. I

 

Heather Straughter  13:51  

know, you had it set up in your garage.

 

Tara  13:53  

I did. Yep. In my old apartment. We had it in that way. On a nice day. We just lift up the garage door and Sophia got to go into swing like a typical kid. It was awesome.

 

Heather Straughter  14:02  

Awesome. I don’t know if the audience has caught on this or not. But you and I share more than just a special needs. Child. How long has it been now since Sofia has passed? When did she pass in 2019

 

Tara  14:16  

October 19 2019. So four and a half years ago. And to me it feels like

 

Heather Straughter  14:21  

yesterday. Does it always feel like yesterday to do you think to me,

 

Tara  14:25  

I find a way to keep my life busy. Because if I didn’t I feel like it would constantly feel like it happened yesterday. Because

 

Heather Straughter  14:32  

I feel sometimes like I can tell you it feels like yesterday like I can remember the moment and that feeling and all of that like it was yesterday. But then at some points it feels like an entirely different life. And I can see

 

Tara  14:46  

why you’d say because the other day I forgot how old Sophia would be this year. And as I did the calculations I was like, Oh my God, I feel like she’s been gone for so long, but I think it’s because I’m stuck when Sophia was seven Yep. And even though She’s not seven. It’s kind of like, you know, you live back there and it feels so long ago, but then it’s like, oh, no, I feel like it happened yesterday.

 

Heather Straughter  15:06  

Exactly. I mean, that’s exactly it. So she passed when she was seven. Do you picture her older? Or do you kind of keep her at Zookeeper? It’s at my keeper

 

Tara  15:15  

at seven. Yep. And even though we celebrate, and we do, you know, big thing for every year, and I go away for her birthday, because her birthday is actually six hours before mine. And to me, it was it was a birthday present to me. And I remember always saying that Sophia deserved her own birthday, and no one listened. And of course, we always celebrate it together. And now I look back, and it’s something that I truly, you know, miss. And so I think for our birthday, I always go away, and then I come back, and we always celebrate her. But to me, she’s still 77

 

Heather Straughter  15:46  

talk about, you didn’t know she was going to pass?

 

Tara  15:49  

No, they actually told us that all of her organs and everything was normal, and that she would probably outlive, you know, me and her dad and that one. Oh, really? Yeah. And at one point, I remember being like, Oh, my God, what happens if something happens to me? What would happen with Sophia? And I remember me and her dad having serious conversations, kind of like, you know, God forbid, what would we do in the diner? So we said that what would ultimately maybe patternmaker past would be like the flu, or if she couldn’t be in an infection, but ultimately, that wasn’t it. So what happened? So I will talk a little bit, but I don’t get into details. So I found her in her bed the morning of October 19. And I knew how she had passed away, because obviously, I had found her. And I think in that moment, I just kind of backed away because it was such a shock. And when I had gone to get my neighbor, I remember her being like, did you call 911? I was like, No. And she’s like, You need to call 911. And I was like, But why? And I think it was because I knew that she was gone. And you know, she had made me call. And I know when I think it was because I wanted things to stay right there. But you want to freeze it. You want to freeze it? Yeah. And you know, from that moment on, I remember that they did everything they could, but I knew I knew.

 

Heather Straughter  17:02  

So when Jake passed, I know that moment, sort of, you know, and we did call 911. And he did go to the hospital. And he was there for a little bit before he was pronounced and all of that. But there was a moment. And I remember when I called Brian where I was like, I think it was death, like and I said he’s like, What are you talking about? Like, you know, because it was kind of out of nowhere. But I kind of know what you mean, like, there’s that moment where you’re like, this is very, very different than anything before. It’s so awful.

 

Tara  17:27  

It is and people you know, always I don’t really talk about openly about it, because the details are kind of the raw are hard. And they’re real. And you don’t want to scare people away. But it’s the picture and nobody really wants to talk about it either. But at that moment, Sophia was a different color. So because she was a different color. I mean, you know, I don’t mean so because I think it was that color of her that I was just kind of like it’s it. It’s that time.

 

Heather Straughter  17:50  

And you mentioned like wanting to freeze that moment. I remember a moment, you know, when we were burying Jake. And Brian talks a little bit about this in one of the episodes that I’m in with him. But the funeral home was really fantastic. And they let us sort of in the days before he was actually buried like they let us they kept the back door open. So we could go in at any time. And I very much remember feeling like let’s not bury him like let’s just I know he’s not really participating. But we’ll just come see him every day, I’ll have my coffee, like into me part of my process was trying was was having to move past that too, because it’s almost like I accepted that he passed away. But I couldn’t quite accept bearing, right like and there was these days in between where I was like, I didn’t really understand why we couldn’t just we couldn’t just exist like this forever.

 

Tara  18:36  

It’s funny when you say that out loud because I was it sounds crazy. It sounds crazy. Now I remember when the dust settled a little bit where it was time to plan the week. And I remember being like to my mom, I want to dress her. I want to do her hair. I don’t want the funeral parlor to make her someone who she’s not she’s She’s a child. And my mom and everyone looked at me like like, You’re nuts. You’re you’re crazy tear. And I was like I’m not and I’m going to do and I remember going to the director and being like, this is all I want. And I remember him looking at me like you’re a young mom, and this is what you want to do. And it’s like Yeah, cuz I got more time with my baby. Yeah. And we went and there was nobody there. Me. My mom went with me. And we did that. That’s exactly what and I remember the day awake. I remember telling my family. I’m not going and I remember Jeff calling me and being like, where are you? And I was like, I’m not coming. And I was vacuuming? Because I was just like, I’m not I’m not dealing. I’m

 

Heather Straughter  19:28  

not going so did you not go?

 

Tara  19:30  

I did. And Jeff was like, I need you. I went and everyone my family that was at the house was like, No, you need to come and I remember go in there and was like, can we get this over with?

 

Heather Straughter  19:39  

Like, I’ve always been comfortable public speaking or doing whatever. But I remember when they were talking about like, well, who’s going to give the eulogy and who’s going to speak? I was like, Absolutely not. And Brian was very much like I well, you know, and he did a fantastic job and really did. I couldn’t even sit like I didn’t even sit with people I sat like on the little whatever like wherever you were Like pray in front of the coffin, like, I sat on that, like for the entire service. It’s

 

Tara  20:04  

funny that you say that because I remember Jeff and I, you know, sit in together. But Jeff got up and sat in front of Sophia. And that’s where his spot was. And people tried to move him. And it was like an ideal

 

Heather Straughter  20:14  

time to sit down. I was like, I’m good here, right? And I remember telling people, like,

 

Tara  20:18  

leave them alone. Leave us allegedly. No, and you didn’t want it sound like a bribe, but it was kind of like, just leave us alone. Yeah, you know, like, pay your respect, but just leave us alone. Yeah. And then I remember at the end, when everyone leaves, I remember you and Brian. Were sitting alone with Ethan, I remember a picture. And I remember saying to my sister, can you take a picture of Jeff and I, and she was like, why? And I brought up you. And I said, because if this is the last picture I have as a family, I want it and my sister thought that I was crazy. And I was like, whatever you want to her at that point, she was like, and I remember the funeral parlor was basically kind of like, you guys gotta go. It’s late. And I remember we didn’t want to.

 

Heather Straughter  20:56  

There’s the moment I think when they pass and there’s that around there. But then there’s that finality of the burial. Family members were like, oh, you know, these are the people willing to be pallbearers? And I remember I was like backup I am. I’m going to be a pallbearer. And they were like, well, you can’t You’re the mother. I was like, oh, Tibet, tough. And I was like, an Ethan’s gonna walk with us. Yeah, we are the family that’s bearing our son. And yes, I always wonder because I think at the time, a few people were like, they were certainly trying to just be gracious and helpful and a little bit more stocked in tradition of like, this is what typically happens, you know, and certainly people had to, like, take the weight of because at that point, I just didn’t, I was eating like, I mean, I was not my strongest version. And it was Steve, who was, you know, he’s kind of like the brother. I never had Brian’s best friend from kindergarten. And then I’m trying to think Rob, maybe like they’re like, but it was like, I just wanted these people who were so close to me. And who knew Jake, like Jeremy and like, I that’s what I wanted. And not that other people weren’t my dad might have been when I don’t remember who the rest of it. But I remember just people saying, like, you can’t do this. And I was like, the hell I can. You know,

 

Tara  22:02  

it’s funny that you say that, because I know people may be judgmental, but for Sofia’s wake, I was very unhappy with it. And I felt like the guy there. I don’t even know what you call him a pastor or whatever he had said a speech about Sophia. But it was the very first time I met him because there was no other person that could do a children’s one, like, you know, awake. Yeah. And I remember during his entire speech, he kept talking about a movie and comparing my daughter to a character in this movie that had a similar diagnosis to her. And I remember that I was so mad that I actually did a second week, did you really we really, we did a headstone and then we revealed it to our family and our immediate friends. And I had someone there that spoken at that time, I had my best friend and my sister speak, okay, and we were up at the cemetery with the people that were the closest to us. And that was the way that I wanted to remember our last I don’t know what you want to whatever

 

Heather Straughter  22:53  

it is, but it’s like the send off or the like whatever. And I suspect you still do this. Like, this is one of the things that I feel a little guilty about. The headstone is gorgeous. And you go all out on like holidays or with like seasons. I mean, that is you have Sophia looking gorgeous. I mean, like the flowers and

 

Tara  23:12  

her actually her headstone is actually custom because to me, I felt like Sophia was different. And she deserved to continue to be different. So her headstone is actually custom. And it came from Vermont. So the colors custom, the measurement is custom. And Jeff and I are on there with her because we are a family. And it is my goal is her mother to make sure that we celebrate the milestones and the holidays and the birthdays and I take care of it as if I feel like I’m taking care of her home. And even though she still has a bedroom at my house, I keep it just you know, low key. Don’t think I’m that crazy. But the headstone to me and the cemetery is a plot where I could go and I could walk there, I could drive my car there I can go whenever I want. And I don’t know, to me, sometimes it’s kind of like, I feel like I’m with her.

 

Heather Straughter  24:01  

How often do you go, oh, a lot.

 

Tara  24:04  

I drive down, I drive the same route to go to work. So I drive by every day. So it’s there every day. So

 

Heather Straughter  24:10  

I asked this specifically, selfishly because I am struggling with this now. So this is you know, so Jake’s been gone 13 years, I would say for the first easily the first eight, nine years, not a day went by that I wasn’t there, often twice a day, like we had a routine for a while, certainly all through elementary school for Ethan. So probably like, you know, the five years where I would take him before school. And then we would all go either the two of us or the three of us because you know, Ethan always had like taekwondo or you know, whatever, and we’d go on the way home. And then in middle school, it was kind of a transition. So Ethan would probably just come with me like once a day, but I still did twice a day. At some point. I would say in the last I don’t know three or four years. I have just fallen out of that routine.

 

Tara  24:58  

I couldn’t agree with you because my on personal routine recently has done the same. And I think it’s because life takes you in different directions. And I think sometimes you’re on autopilot. And to me, I feel like that’s me. So when I leave work and I’m coming down the hill, I’m such an autopilot. Yeah. And it’s like sometimes I don’t even know I don’t remember driving home from work. And then I get home and I’m like, Why did I not stop by the cemetery? Why did I not go there? And it’s because I think your mind is just like, on that same autopilot routine every day.

 

Heather Straughter  25:27  

I’m really struggling with it because it’s fallen off my routine. But weeks can go that I don’t go like and then I’m just like, then I’m like, Am I hurting his feelings? Like, am I a bad person? Like, Brian is going more than I am like, Ethan’s been home for a few days. And I haven’t taken him like, I just I go down this rabbit hole. And I’m like, Oh, I haven’t you know, I haven’t brought over spring stuff yet. It’s been nice. I shouldn’t bring flowers like I should clean it up. And it went for me. And this is where I’m sort of trying to work through it went from being this place where I just was so connected to a place where then I feel like it just became a habit. And I didn’t want it to just be a habit to now being it kind of makes me sad because my kids dead. Like it doesn’t get any easier. And it’s just I think I’m still just angry that I have to go there with us.

 

Tara  26:12  

You know, I didn’t mention but we got Sophia cremated. So Jeff and I divided her ashes. So he has I really Yeah, so they were able to do that for us. So he has some home in her room. And I have some and I have a nice setup of a Hope Chest in my living room. And on there is so you’ve got a little bit of her at home. I do and take the she’s always with me. So when I’m home, she’s home. And to me even though I get upset when I don’t go to the cemetery as much. But I know that Sophie is always there

 

Heather Straughter  26:41  

with Oh, I love that I love and I love that he’s got got her to yes house,

 

Tara  26:45  

it was one of the things that we really wanted. And to me that way, she’s always close to us.

 

Heather Straughter  26:50  

So I want to touch a little bit on so you and Jeff are divorced. How did Sophia having you know her illnesses in her special needs? How did that affect your relationship? And then how has her passing affected your relationship?

 

Tara  27:03  

It’s funny that you say that because that was a loaded question. When Sophia was sick, and even in the hospital, we had come people come and talk to us and like how are you guys? And we’re like, okay, focus on her. And they were like, statistically, 85% of parents get a divorce. And we were like, that’s not going to be us. Like, if anything, we’re going to come together. But as years went on, we realized that there was other factors, of course that played into our divorce. But yeah, it can be stressful having a special needs child because that alone time or, you know, the needs of your marriage sometimes aren’t met. Yep. And to us, we put Sophia first because that’s who was first Yeah. And you know, so our relationship. Now after Sophia is gone, we still have a relationship. And I am extremely thankful of that. Because at the end of the day, who knows what I’m going through, he does. When I’m having a bad day, he knows exactly what I’m feeling. When I want to talk about Sofia or talk about milestones or the hard times. It’s him that knows exactly what I’m talking about. So I’m very grateful that he’s still part of my life. His family still part of my life. My family loves him just as much and yeah, do we, we don’t get to see each other as much. But we we are still involved in each other’s lives.

 

Heather Straughter  28:13  

I love that. And I remember when it happened, I’d come for deliveries and stuff. And you guys were just so peacefully coexisted. And I know that that doesn’t mean that everything was just perfect, perfect all the time. But you guys really did a great job of when you were divorced of just really keeping her Yeah, as the most important thing. And I think you remind me if I’m I could be wrong with this. But I think a couple times there was an idea that maybe a chair or something that worked at your house. And did we get one for him? Yeah,

 

Tara  28:40  

it was the chill out. Yeah. Okay. That’s

 

Heather Straughter  28:41  

what I was thinking I

 

Tara  28:41  

was. So the chair was one of my favorite things that we had gotten from Jake’s and still is, and it’s in her room currently. And I look at it every time I go in there. And Jeff wanted the same one because he loved it so much. So when he had bought his house, he was like, Do you think that we can reach out to Heather when it’s time to get one? I’m like, Yeah, I mean, she’ll understand why she has two houses to travel to. And to this day, it’s in her room at his house. And it’s something that we unfortunately can’t donate even though you know, sometimes you want to do good by donating things. But there are things that just sit too close to your heart that you can’t get

 

Heather Straughter  29:16  

rid of. It’s in a closet upstairs now, but I have Jake’s bath chair.

 

Tara  29:19  

Yes, sir. Otto was

 

Heather Straughter  29:23  

the other way back then was a little bit different. And we used to bring it to the beach. Yes. Yeah. It was like a beach chair

 

Tara  29:30  

for him. I feel that same was with Sofia’s stander. It was custom for her. I can even picture it’s dark purple with glitter. And I remember that some people are like, what do you need that therefore in her room right now and I said, you don’t realize that when you’re a special needs mom and you get to see your baby stand up for the first time knowing the fact that they’re never going to stand up on their own. You need this for them to stay and I remember looking at her and her looking around and being like this is the world that this is and I remember her somebody even saying Tara, she says I’m almost as tall All of you, what are you gonna do when she’s taller than you? I’m like, I’m only five foot one that’s going to happen. And I remember just looking at her and I was like, I’m I level with my daughter,

 

Heather Straughter  30:09  

the stander, you know, so Jake had a love hate relationship with his dad, he had to she cry, you know, and sometimes would like stiffen up. So like you couldn’t get them in it. But once he was in there, it was exactly what you just mentioned. He was just he was standing, he wasn’t lying. He was like seeing the world from a different viewpoint. And it always would remind me, and it’s a good lesson to kind of talk about now because I haven’t thought about these things in a while. We take so much for granted. Yeah, we take sitting for granted, we take standing for granted, we take what you know, we just take things for granted. I know that I see the world differently. Oh, yes, I try to see it through Jake’s eyes. It’s good. I

 

Tara  30:46  

think good. It is. Yeah, it is good. And I think it opens up your eyes or our eyes to a whole new world that we were never part of. Yeah. And now even though both of us don’t have our children with us, we still look at that world differently. You know, I think that’s always going to be a part of you.

 

Heather Straughter  31:01  

And as I get older, and a little bit less even less concerned about what people think and those kinds of things, I just it’s such a catalyst of me to like advocate for people or when you see people saying something or just acting, I don’t know, not kind. It just It infuriates me like I don’t have that chill button anymore. No.

 

Tara  31:20  

And I think sometimes with me, even though I may speak when I’m not asked to speak, people are like, Tara, you need a filter. And it’s kind of like no, because we have this passion inside of us. And I had to be that type of person for seven years. Yeah, that there’s no entourage no going back now. Yeah. And it’s just, this is who I am now. And even now, four and a half years later, some people still say comments, and they’re like, you know, the one that drives me crazy the most is, are you going to have more kids? Oh,

 

Heather Straughter  31:47  

that’s a good one. That that was a Yep, that was asked all the time in those days that are like, Oh, so you guys are gonna have another kid. Right? And it wasn’t even asking it was kind of like a statement, right?

 

Tara  31:56  

And I’m just kind of like, why? Who gave you permission to as such an intimate question, you know what I mean? And then it’s like, I feel like some people think in their head. Well, if Tara has another kid than the grief, the hole in her heart, everything will just fill up and be done. And it’s kind of like it life doesn’t work. Like

 

Heather Straughter  32:12  

though I have found that, like, my grief certainly comes in, I call them kind of like the waves, you know, so it’s like, there’s periods of time where I thought that I was doing better and doing fine. And, and I’ve been fairly public about it, but like, you know, Ethan graduated high school in June and went to college. And, you know, he’s almost done with his first year, which, frankly, I have no idea how time has, you know, talking about time flying like, it’s crazy, and we’re coming up in May is gonna be Jake’s 18th birthday. It’s crazy. But that change like that real change in my parenting change in my relationship change. And all of those things. Hit me like a ton of bricks, like I was pretty down and out for, you know, a good month of just, like still okay, like, still, like, you know, live in my life. And if you look at my Facebook and Instagram, you think I’m living this great life, but like, I was pretty like, wiped out.

 

Tara  33:04  

I’m glad that you said that. Because people have actually said that to me and members of my family where they say, oh, Tara looks like she’s doing this. And Tara looks like that. And Tara looks happy. And it’s kind of like, who if you only knew Yeah, no, it still has, sometimes you have to put one foot in front of the other. Sometimes you have to put that smile. And I remember one time my mom saying to me, Tara, that smile that you had four and a half years ago, I have not seen that smile. Again. It doesn’t mean you don’t smile. But it’s a different. It’s a different mode. Because your life is different. It’s different on through a lot that sometimes it changes you as a person you don’t want it to. You can’t control it, because it’s going to change you.

 

Heather Straughter  33:42  

I know. And I have been very open about sort of to me, when I see a cardinal I see Jake, it happened pretty early after Jake passed, I was running a lot because I didn’t know how else to fill my days a little bit. So I go on these crazy long runs. And I remember coming home once and being like there’s this Cardinal stalking me. And then after a few times of it happening being like, oh, it’s Jake, and we just, you know, still like we see a Cardinal. We’re like, Hey, Jake, you know, Brian’s in a good mood. I’m in a good mood. If you see a cardinal Ethan’s in a good mood, like we just it brings us joy, you know, and, and when we are at the cemetery, oftentimes there’s some there’s like a cardinal that hangs out there. So it just always feels right. So I know for you, it’s butterflies. I

 

Tara  34:22  

think I’ve shared this with you. But butterflies go all the way back when Jeff and I found out that we were pregnant with a girl that we decided to do her nursery with butterflies. And it’s funny because this is kind of like the first time that I’m really sharing that because a lot of people think that butterflies came after Sofia passed away but it’s like the purple butterflies had been part of our story since I was pregnant, which was 11 years ago to me so that’s how long it’s been. So as our lives continued, we would always see butterflies and we see them outside with Sophia there would actually be one that landed on her one time and I was always like, there’s something about a butterfly and with a tattoo on my arm. It just reminds me that you can keep going you can keep you know Spread those wings and keep flying. Anyway, let me it was always Sophia that no matter how many hard days she had, she kept going. And after Sofia passed away, I went to go see a psychic and Whether people believe in that or not. And I remember her telling me, Tara, follow those butterflies and they’re telling you something. And I remember I went to the ocean where I always go, and it was freezing now it was the middle of winter. And we saw a butterfly. And I think you saw my Facebook post back in October when I went there and anniversary. We saved a butterfly that yes, yes, yes. And the ocean and the wind was broken. And I put it in my hand. And to me, it was what what somebody told me was that follow it. It’s Sophia, and Timmy to this day, when Sophia first died up at the cemetery. There was actually seven butterflies and she was seven when she passed. So to me, people think I’m crazy, or whether it’s a coincidence or not. To me, it’s Sophia,

 

Heather Straughter  35:51  

at the risk of being corny. Like, it

 

Tara  35:53  

just makes your heart full, right? Like, sometimes it makes me want to cry. But at the same time, I take a breath of fresh air. And I know that even though Sophia is physically not with me, she’s with me. And she’s going through this life with me. That’s

 

Heather Straughter  36:05  

100% what the cardinal is, for me, it makes me feel like I’m still a mom, right? Like, like, I’m not just Ethan’s Mom, I’m still Jake’s mom. And there’s this piece of it. Right? You know, so you mentioned you’ve got a butterfly tattoo. So when Ethan was 17, you know, teenagers nowadays are all itching for tattoos early, right. So in New York, you have to be 18, even if your parent approves. So we were actually in in Maryland, and I had said it was around Jake’s birthday. I was like, you know, we’re gonna be in Maryland, you can get a tattoo at 17 with parent permission there. We’ll do a family tattoo. But we all got a cardinal tattoo. And we all have it. And I love that like to me, it’s like you said, it’s a constant reminder, because I see it all the time. I see it and it makes me happy. I did a series of tattoos after Jake passed, like I’ve got his name on my neck. I’ve got like, I just have different Yang because I just I don’t know if it was about they’re gone and trying to have something permanent. Like I don’t I’m sure there’s some sort of threads.

 

Tara  37:05  

And that’s how it was with me. After Sofia passed away. I was like, What can I get on my body so that we she’s a part of me. And I’m very thankful that her therapists which I know, Jake did therapy at home, they had made me a Mother’s Day card. And you know, she couldn’t write or anything that prints. It was this Mother’s Day card that they had made me through school. And Jeff had made me one with her. So there’s three Mother’s Day cards that I combined into one and I remember going to the tattoo therapist and being like, this is what I want. And him being like it’s gonna look like a kid. I’m like it’s supposed to and her handprint was there. And I have it near my heart. Oh, I love that is over my heart. You

 

Heather Straughter  37:41  

just brought me way back though. When Jake was in the hospital, you know, for the 117 days that initial stay. He was there for his first birthday. And my first Mother’s Day with him was in the hospital. And the nurses there It surprised me with they put it in a little little container, but it was his feet and his hands. They did their prints and they put them on these like cutouts and they were almost on an on like pipe cleaners or whatever so that it would look like they were flowers. And we still have that. I mean, I still have that in our office on the shelves.

 

Tara  38:10  

Isn’t it funny when you talk about things like that? Because my first Mother’s Day was in the hospital, Jeff, three nurses and a doctor surprise me and we actually got to go outside and walk to the Tulip Festival. And I remember Sofia had tubes. And I remember they brought all the emergency stuff. And it was something that I’ll never forget. Was it my idea? No. But it’s no but then there was a charm on the card and we converted it into a necklace. Because to me that was my first Mother’s Day whether I planned it or how I imagined it would be but to me that was that was it? Were What do you foresee

 

Heather Straughter  38:40  

like the future? Right? Like, let me I’ll explain that one more like, like, for me when I got a new car after Jake passed, I flipped out a little bit like I wanted the like it was time it was all of the things. But I was like this car Jake has never been in. And I struggled with that a little bit like there was that? You know, and Brian and I have both said like, we will never we may not like live full time in Saratoga forever. But we will never sell our house like, like I need it. Like that’s where Jake live. That’s where he thrived. That’s where he had PT. That’s where all our memories aren’t. And frankly, it’s where he died. You know, it’s, I can never not have that house. I feel like no matter how much time passes, there’s still this like tie right to the life that was with Jake, even the more time that goes. So my future, you know, can be anything, but it still has this tie. Do you have things like that? Do you have these things where you’re like, oh, I can I might do this? I might do that? Or do you feel freedom? Or do you feel a little tied down? Or do you have no idea? To

 

Tara  39:39  

me? That is a loaded question. Because to me that’s Mechanicville and everyone’s like, well, it’s a city, but to me a lot happened in that city. Yeah. So I feel like I always said I would never move out of mechanical job. But there are things in my life that are currently changing for the good. I may move out in Mechanicville and I may you know venture and have an event or someplace else and that’s okay. But it’s Under Yeah, makes me very nervous. Because to me, I built that. It’s my comfort zone. It’s my security blanket. So those are certain things. But I think that sense my life would Sophia to now, I have a purpose. And I think for a long time, I lost my purpose. I didn’t know who I was. And it’s funny, I said that when I saw you at the podcast party, I remember you saying that Sophie is mom and to me, I felt like I had my identity back. Because nobody says it to me anymore. You know, I’m Tara. And I’m like, but no, for a long time, therapists, doctors, nurses, I was never tear to them. I was Sophie as mom. So now fast forward the four years or so he has been gone, I realized that my purpose is to take care of people. And that’s what I do for my career right now. And I strive to do that. And whatever path that may lead me on, that’s, I’m gonna go with it. I’m gonna go with it. Because to me, I feel like it’s Sophia telling me that this is what I’m supposed to do.

 

Heather Straughter  40:56  

Well, and because of her through her, right, like you find you find your skill or what it is

 

Tara  41:01  

because I never said I want to work in healthcare, my mom, that’s what my mom did grown up. And I remember being like that. That’s not me. I went to college to be a physical therapist for a sports team. Now here, I am a case manager for an entire assisted living, and I take care of over 40 people. I was like, they don’t count. Yeah, but I 100% Give that credit to Sophia. Because she defined me, she changed me, she made me into the woman I am today. And because of that, I will continue to do what I’m doing.

 

Heather Straughter  41:28  

It’s awesome. It’s like they weren’t here a long time. But they they made their mark. And they did. And it’s awesome. So you may know this, but we do this portion of the show that’s called Ask Heather anything. So what you got for me?

 

Tara  41:46  

So I’m gonna have a loaded question for you. Because I think like you said that Jake’s been gone for so long. Yeah. And to me, so if he has been gone for four and a half years, but I still cry over her, I still have my moments. Do you still have your moments? And what makes you kind of break down? Oh,

 

Heather Straughter  42:00  

yes, I absolutely have my moments. And I, I wish I could answer that and say what makes me break down like sometimes, but but it’s it’s all over the place, right? Like, sometimes. And what I’m currently like, have a pit in my stomach over is, is that guilt I talked about earlier, it’s the guilt of like, Jesus hazards and other day and you did not go to the, you know, you didn’t go see him at the cemetery and you haven’t brought him new flowers. And it’s just, you know, there’s members of my family who, when they’re home, go, you know, every single day, and it’s part of their routine, and I have turned this into something in my head, I have made it something and I need to just get over it and get back into a routine and accept it. But like, things like that can almost break me because it makes me feel like like, I’m not a good mom, or like I’m not doing my job or I’m not taking care of him. So there’s that just because it’s sort of current, there are other things that when Ethan went to school, I had such a hard time a I knew I was gonna miss him so much. And I knew I hadn’t missed anybody like that, since I miss Jake, you know, and I still don’t entirely understand the comparison or the the connection like I mean, I the obvious connection I get but one is very different. One is you know, a Ethan is graduated high school did great got into the college of his choice is at college. Like that’s a very different experience than Jake dying unexpectedly when he was four, I had to do a lot of and who knows, maybe I shouldn’t go into therapy. But I had to do a lot of sitting with myself and like soul searching and like figuring it out. I couldn’t differentiate the pain. I couldn’t differentiate that loss of Jake with the loss of Ethan and common sense me knew that was so different. You know that they were two different things. But I couldn’t, I couldn’t it took me a long it took me like a month to like be able to just separate that it comes at these times when I don’t expect it right. Like I could be kind of feeling all right about things. And then all of a sudden, you know it. You talked about keeping Sophia seven. I’ve always tried to picture him growing up. And I but I can’t picture him at 17. And that’s got me you know what I mean? He’s going to be 18. And I can’t I just don’t know what he looks like as an 18 year old because when I look at Ethan when he was four and look at him now at 19 Yes, sometimes you can still see the little boy and the 19 year old but he’s a young man now. And it makes me sad. And I could make me cry right here thinking that I don’t know what my son looks like at 17. And

 

Tara  44:23  

it’s funny that you say that because I always say that i i will swap out pictures of Sophie around the house or in my office at work. And I’m always like, it’s the same pictures because you don’t have any you don’t have that pictures. It’s heartbreaking me because like, oh, that’s the same picture that I’ve had. Oh, it’s that one. How many times can you change the same picture over and over again?

 

Heather Straughter  44:41  

I remember in the years after that was a real thing, because it’s like Ethan would get a new school picture every year right so we had this area where you know so now it’s Ethan’s, like I think when he started like two year old program at like Beagle school or something all the way to his high school graduation picture. And there was an other area that was going to be Jake’s and we ended up moving it because there was only one like he had prospects. Well, he got his picture taken like an official school picture. And there just was one. So it’s in this different area. I struggled with that a lot, because I was like, there’s one picture of Jake and every year, there’s this new picture. Now that wall is filled with Ethan’s, but it’d be you know, when he was in first, like, you knew that the whole wall was going to be for his pictures. And when we had to move Jake’s like, that was hard, different and it hits different. And my house is filled with pictures of trips and mementos from trips and family pictures. Like I just that’s kind of how I decorate my house. But there are these pictures that are just Ethan and Jake. And, you know, Ethan was five and Jake was four. And those never change? Because that’s, there’s no new versions of that. Yeah, exactly. There’s no updated version. And

 

Tara  45:43  

I have one more question for you. And I’m gonna ask this to you, because I feel like I can, you can ask me anything. Because I feel like we’re on the same level. So me, I face a lot of mom guilt. And to me, I blame myself for a long time of what happened to Sophia. And I blame that day of her dying on myself. And it’s something that I still live with, and I’ve gone to therapy for. And it’s something that people don’t get. So with you do you have, they’ll mom guilt I do.

 

Heather Straughter  46:09  

When Brian was giving sort of the eulogy, at one point, he says to me, You know what I’m sitting like, where I told you like, in front of me, because I refuse to sit anywhere other than in front of the coffin. He said something to the effect of, you know, you took care of him day in and day out, and you gave him the best life. And, you know, you were this great mom, and there was something in what he said that I felt, release some of that for me right away, because I was like, this happened on my watch, you know, I mean, this Yeah, this was me. 100%. So I do feel like hearing those words from him when it was so raw and so new. Yeah, fresh, helped tremendously. And I think it’s why I think it’s a huge part of why Brian and I, you know, you talked about, like the 85% of relationships that don’t last and the numbers huge, you know, when when a child is has passed away. And I think that that gift he gave me so early on, is part of why we never flinched. And I’m not saying every day, right? Yeah, roses, but we are very connected by that. But I will say when those dark thoughts come through, yeah, like it was. He was on my lap. It was my watch. I mean, it was 100% me, and it sucks, you know, it’s horrible. What I will say is, there’s part of me. And this is potentially weird. But there’s part of me that is glad and grateful that it was on my watch, because I don’t think I’d ever forgive anybody. Like I would not be as gracious as Brian was like, Brian, instantly granted me forgiveness and maybe not forgiveness, but acceptance or ignorant like, like he didn’t live in that space. Or if he did, he never showed it to me. I could not have I suspect that I would have been filled with blame, and anger and our story would be different. So for me, the only way that I can live with it is that I that it was on my watch. So Tara, thank you so much for being a guest on a place of Yes, I have been looking forward to this for so long, even before you even knew this was an option like you were on my list to ask be on the show. And I have so loved sharing these stories with you. And I have loved going down a little bit of the memory lane of our relationship and of and remembering Sophia.

 

Tara  48:31  

Well, I have to say thank you to you because you allowed me to face a fear of mine. And it was to talk about Sofia openly because I typically don’t and to me, I felt like that I’m her voice and I have to share her story. And it’s because of what you do allowed me to kind of let that wall down. So thank you

 

Heather Straughter  48:48  

know you’re very welcome. And cheers to Sofia and cheers to Jake. That’s right. Thank you for listening to a place of yes, please follow us wherever you listen to your podcasts, please subscribe to our YouTube channel. Leave us a thumbs up or leave us a comment. We would appreciate all that you can do. If you really liked this episode, please share it with a friend or two. For more information and to leave us any feedback. Please reach out to us at www.jakeshelpfromheaven.org