In this poignant episode, host Heather sits down with Tabitha to delve into the realities of raising a child with severe cerebral palsy. Through heartfelt conversation, they explore the profound challenges and triumphs of caring for a disabled child, shedding light on the importance of awareness and advocacy. Together, they candidly share the highs and lows of motherhood, navigating the unexpected twists and turns and grieving the life once envisioned.

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Keep scrolling for the episode transcript. 

Checkout our other episodes 

 

 

Marcy, Andy’s Mom

Marcy, Andy’s Mom

Marcy lost her 14-year-old son Andy suddenly in a car accident when they were on a family outing. This episode documents her grief journey.

Q&A With Brian, Jake’s Dad

Q&A With Brian, Jake’s Dad

Join Heather and Brian in a personal Q&A session as they navigate the grief of losing their son, Jake, at just four years old.

Cait, Jake’s Nanny

Cait, Jake’s Nanny

Cait, the beloved nanny of the Straughter family joins Heather for this episode. At just 21, Cait embarked on a journey of caring for Jake.

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

Tabitha 0:09
We knew he was very sick. And we knew that she was never going to have quote unquote, normal life. You know, as a parent, I think you always want what’s best for your child. So we were getting the gait trainer, we were hoping Abby was going to be able to walk Sunday we were doing the braces and every doctor’s appointment under the sun. And at a certain point, I think we just accepted. That’s the word I was used to what it was.

Heather Straughter 0:35
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 Yes. Welcome to the show. In today’s episode we talk with Tabitha Abby’s mom, and Tabitha is just this really kind and generous person who no matter how you meet her, she is just trying to help you and make your day better. It was such a joy to have this conversation. She shared a lot of anecdotes about her job at Stuarts, which for those of you who don’t know what Stewart’s is, it’s a capital region, iconic institution, really, they are a gas station, meet coffee store meet best place for milkshakes, they have everything. But she shares about how she goes into her job. Her job is to help people and she does that. And she does it every day with a smile on her face. And to me it’s just such a reminder of how we present ourselves and who we can be to others. Regardless of what we’ve got going on. It just was a really uplifting episode and I hope you enjoy it. But first, it’s time for our review of the week. Heather, I’ve always been on so inspired by your strength, the way you’ve given so much of yourself to other families in need. I’m sure this podcast will be a true blessing to so many people. Keep up the good hard work. I know Jake is smiling down on you every single moment of every single day. I loved reading that review because it came across so genuine. I love when people recognize how important it is to me that Jake feel proud of me and that most of what I do is for him. So I love that connection between the work we do that makes me feel so good, but also for the reason why I do it. Today we have Tabitha with us. Abby’s Mom, we have been working with tab and Abby since 2013. They live right here in Saratoga Springs. And we have really gotten to know each other in a variety of different ways. Can you tell me a little bit about you and your family? Yeah,

Tabitha 2:51
so I’m Tabitha. My husband is Bo. We have an 18 year old son Andrew and then Abby is now 15. She was born at 33 weeks, placental abruption. No blood flow through the umbilical cord. Nobody thought Abby was going to make it in the beginning. You know, her discharge papers told me that she was probably going to die at home and here we are 15 years later. Overall diagnosis is severe cerebral palsy. There’s quite a large spectrum for cerebral palsy. You know, Abby is on the more severe spectrum. She doesn’t have any head control. She’s fed through a tube in her belly. She has a seizure disorder, knock on wood, we have not had any seizures now in probably like three years. That’s amazing. She did. She did take up there for a little while. We couldn’t figure it out. But we tweaked some meds and got her back on track, thankfully, because those are scary things, seizures, even when you’ve seen them in the past. They’re just every time they can take your breath away. Every time that minute or two. It seems like it last five hours. It’s it’s the worst. But other than that Abby is a happy little girl. She’s loves to smile. She loves interacting with people. She has her own way of communication.

Heather Straughter 3:58
So when you just said that Abby is 15 that sort of blew my mind. I mean, I know that you know, and, and Ethan and Andrew are the same age. So I know that we have sons that are 18. But Abby being 15 1515. So we started together in 2013. So that is over 10 years ago. She was a little peanut a little peanut. That’s wild to me. So let me tell you a little bit about how we got to meet Abby and Tabitha. Jacob from Heaven is an organization founded by my husband and I it’s dedicated to creating opportunities for those with disabilities to thrive. We found a jigsaw from heaven in 2011 after our four year old son Jake passed, how did you first learn about Jake’s

Tabitha 4:37
So Andrea was an elementary school and we were actually we held the benefit for Abby, like a spaghetti dinner at Maplewood firehouse. I cannot remember Trisha I believe she saw the flyer and then called me and was like, Have you ever heard of Jacob from heaven? And I’m like, no,

Heather Straughter 4:54
I forgot about that. How that came? Yeah. So that’s interesting. So Trish, who you speak up She and I, when I moved here from Boston, she was one of the first moms that I met. She’s one of the few people in Saratoga who knew Jake before he had a seizure. Like she knew Jake when he was absolutely healthy, vibrant. Oh, young boy. This is sort of a small world. The night that Jake had a seizure when he was eight months old, was the night of Ethan’s second birthday party. And there is this picture of Trish holding Jake, who was just the like, he almost like stole the show from Ethan at his party. He was just he, you know, those of you who have seen Jake, he just had these like great brown eyes and big cheeks and he was just the life of this party. And Trish, one of my favorite pictures from that it’s kind of our before picture was Trish holding Jake. Oh, literally hours before he out of nowhere had a seizure. Yeah, I didn’t put that together. But that kind of that makes it even more special. Yeah. I was wondering if we could talk a little bit about the chairs that we have, you know, we’ve we’ve worked together in a lot of different capacities. But can we talk a little bit about those special tomato? What are they the sofar? legislator, they have such a strange name?

Tabitha 6:01
Tomato, soft touch, Senator. Yes. They’re they’re amazing chair. It’s literally I don’t know how to describe it. It’s hard configuring, but it’s soft to the touch. It helps keep Abby’s spine aligned, it’s got a base we wheel around all over the place, we get her in and out with her lifts, you know, with it now that she’s so much bigger, we take them everywhere we go. If we’re going to be going to the lake for the day, we take that with us. It’s just so much more comfortable than that stiff wheelchair. And unfortunately, it’s not something insurance covers because it’s a wall, I guess not a need.

Heather Straughter 6:35
I was gonna say it’s one of those things they don’t deem as like, medically necessary, right. But if you’re actually in the trenches, it is

Tabitha 6:41
it’s the best chair. I mean, I her therapist back in the day was the one that told us about it. Obviously, when Abby was a lot smaller, they were huge difference in price. So you know, for like Christmas, we’d get her one or whatever. And our lives would have been totally different. Without that chair, they are the best thing ever. And I hope Abby doesn’t get any bigger because size five is the biggest they make we get to have a talk with them.

Heather Straughter 7:04
You know, I think of every time I think of that chair, actually, I think of Abby because we have so many fantastic pictures. And every time she’s in it, she’s just she’s in control of it. She is just smiling, and she’s laughing. And even when her limbs are kind of moving and stuff. She’s in it like yeah, he just loves that chair. I think the first one we got possible, maybe like a size two or three every I don’t know, maybe 18 months or so we get an application. And at the board level, it’s one of those things where it’s like, Wait, we’ve bought this before, there’s always a couple, you know, board members who are like, wait, you know, and what we end up talking about in this this may sound odd what a gift it is that Abby is still growing and and making so much progress and just the fact that she’s outgrowing these some of these chairs and the fact that she is even, you know, we were talking about earlier, but like the wear and tear like she kind of she’s hard on these yards on these shares. Because she can cuz she is and she can be in movement. And I just I don’t know, I think these chairs are great. We were thrilled. Although like you I was like, Oh no, this is the last size. You know, so we just recently I think at our December meeting approved the size five so we are waiting for that to come in. But I can’t wait for that delivery because those are always one of my favorite deliveries. Yeah, it’s been a while since you’ve seen it has been. She’s

Tabitha 8:20
she’s grown a lot in the last couple of years. She’s She’s a beast now.

Heather Straughter 8:26
It’s unbelievable. You know, I’ve talked with other moms, we talk about the resilience of our kids, you know, and it’s different than than our resilience for sure. You know, I used to say this with Jake right, like, they get up in the morning and they they live their best life. You know, sometimes I can’t get up in the morning and live my best life and I’m guide right? Why don’t you I mean, I think of Abby a lot because she has that amazing smile. She definitely does her smiles worth a million worth a million dollars. It’s just so it’s so sincere to you know, I mean, it’s not just a reaction. It’s a it’s like a feeling with Yeah. So talk a little bit if you’re comfortable with with that like coming home with her and them saying she was probably going to die at home like,

Tabitha 9:03
I mean she spent 71 days in the NICU. It was all her first holidays. She was born in October. So all of our first holidays, Christmas, Thanksgiving, everything was in the NICU. We had done the rooming in room. Okay, where you have to because any child that’s coming home on equipment needs the parents need to like take care of them with the equipment but still nurses are still there. She turned blue on us. So she bought herself looking after 10 days in the NICU going home yet oh god I don’t think I slept much at all in the beginning. And Andrew was little he was little he was like three and a half I think right around there to look back now I’m like I don’t know how I ever survived that. You know, is a constant calling the doctor trying to worry about you worried about so much so much thing sometimes and you’re scared of everything. And I

Heather Straughter 9:49
remember that feeling of being scared. Yeah. Because you know, we’re similar in the sense that we had an older child first so you sort of know what it’s like to be a mom and and to be a mom of have a fairly to typical kid, and then all of a sudden, you’ve got this medically fragile, like, you don’t know. And I just I just remember when we got out of the hospital after Jake had started seizing, and we were 117 days at Boston Children’s, I just remember being like, I remember not trusting my instincts, like having to learn to trust my instincts again, you know, with Ethan, I could just be his mom, and I, you know, even if you made a bad choice, it was still right. Life went on. And I just remember that feeling. And it took me a while to get comfortable with that feeling or to shift it, but like, it was just wait, if I make a mistake, this could be terrible, you know, and

Tabitha 10:35
it’s different. You know, in the beginning, I mean, we took her to every doctor under the sun, and the doctor, whatever the doctor said, was a Bible of the way we lived our life. And then, when this doctor said something different than this doctor, it was, Oh, my God, what do we do? And, you know, over the years, we’ve learned that we keep Abby pretty healthy and happy. So mom and dad are the best in regards to what has needed for Abby. And thankfully, we have condensed her team of doctors, we don’t see nearly all the specialists that we used to, but the ones that she does see, truly care about her and are connected to her, you know, are invested in making Abby live her best life.

Heather Straughter 11:14
I mean, I think what you just touched on is so important, because there is that instinct where you just you forget to make your own decision, right? Like, you’re just like, oh, they said this, so I’m going to do this. But then when you have that moment, that switch of like, wait a minute, yes, I’m still her mom, I still know what’s good for her like I can. And then you as your family unit, you know, it’s so important. And you’re totally capable of giving, you know, I’m giving her all the things you don’t need someone to give you a script, like what was best for Jake, and I’m sure what was what’s best for Abby is not always what the doctors are saying, right, right. Because there’s actually like, oh, do this, do this, do this. Or you know what, maybe we’re not going to do five days of therapy in a row, maybe we’re going to do four and on that fifth day, we’re going to like snuggle on the couch and watch movies. Yeah, because that means something to you know, the other thing I wanted to touch on with you a little bit was, how do you think Abby has impacted? Andrew, you know, I talk a lot sometimes about Ethan. And it’s a little different, because, you know, Ethan lost Jake, when he was young, and there’s a different weight on that. But I always think that there’s this compassionate side to Ethan. And maybe it always would have been there. But I tend to think that that being Jake’s older brother really molded him and formed him in, you know, is important part of who he is 1,000%

Tabitha 12:31
I mean, anybody that knows Andrew, it comes in contact Tech with Andrew always says, what a compassionate, caring Kitty is, from the time he was, you know, three, four years old, because he was trucking to the NICU with us every day, you know, it taught him to be a different kind of person. And he missed out on a lot, you know, there was times where it No, you can’t do this because we can’t take Abby or, you know, just different things throughout the

Heather Straughter 12:57
course of birthday party because we’re in Boston for a doctor’s visit aren’t right,

Tabitha 13:00
or, you know, oh, five days a week sport is, you know, Dad’s working and mom has to bundle Abby up to bring it was sometimes it’s a it was a give and take. And unfortunately, Andrew and I’m sure you know, Ethan, in regard definitely missed out on some stuff, you would never know it, to look at them. I think and I you know, I don’t know, Ethan that well, but I know him a little bit and injuries, definitely he wants to go into counseling. He’s like, not necessarily kids, you know, like me that have a sibling, but he’s like, I just want to be able to understand that like people can talk. And that’s what has made a huge difference. They’re

Heather Straughter 13:36
just I don’t want to use the term well adjusted. So I’m sorry, I’m sort of like pausing. Because that’s not that that implies that there’s a reason, you know, that there’s sort of a negative if you have to be well adjusted, but they really, it’s like they they take the responsibility so seriously. And I understand in a way that I think, you know, a lot of 18 year olds certainly don’t and backto you know, when they were 1415, right, when Ethan was five, six, you know, when they’re young, and they have to, they have to look at things differently. I don’t know, I’ve always had this kind of thought that because of Jake, I am a much better person than I was 1,000% or you know, and I think that impact rubs off on so many people, you really have to strip through the bullshit really, because you just have to be it just teaches you what’s important in a hard way, but in a very real way. 1,000%

Tabitha 14:23
I always say that Abby’s made us better people, all of us all around, kind

Heather Straughter 14:26
of leads us a little bit. So the the name of this podcast is a place of Yes. And that came from sort of me. You know, after Jake passed, it was just there were a couple of things. But I mean, a it’s horrible, right? Like, I mean, it’s your worst nightmare. It is the thing you are most scared of. And then then it happened. And it was in those early hours. We talked about what could we do? What are we going to do with all these lessons? Like I was so nervous about like not being able to talk about him anymore, like even oddly, I just was like, you know, you just want to talk about your kids. And now what if I It can’t. And that’s sort of where Jake’s Hall from Heaven was born. It was born from that those days after of like, what do I do with all this information? What how do we how do we take these lessons and make it better, but it also came from, I still have to be a parent, like I still have to Ethan’s a five year old little boy and he needs his mom. Right? And we started, I would always kind of be like, Alright, I’m coming from a place. Uh, yes. Like I would I would drive at home a little bit, because in my darkest hours, I was not like, yes, was the farthest thing from me, right? Like, I just was like, Do you want to get a bed? No. Do you really like what? Like, what do you want to do? And I didn’t want to do anything. So it sort of started way back then it became something we talked about at the board meetings, it really became something where as we sit in that table, and we have a really great group that comes together with the applications and is really thoughtful about the decision, and what is the like, fiscally responsible thing to do? And what is the right thing to do? And is it medically convenient? Or is it medically necessary? We have all these conversations. But I would always say, you know, if someone’s asking us for something, and they have done the work that we need to, then we should say yes. You know, it is not our place to tell people what they need. It is our place to help them get there. I would always just say we come from a place of Yes. Do you come from a place of Yes. Like, do you? I mean, it’s such a funny question. If it’s not something that you’re thinking about often, but I definitely

Tabitha 16:22
feel like it’s become that. And I think you know, having a child like Abby has molded that even more plain and simple fact is everything we’ve ever asked for for from you guys. You’ve said yes to saying yes. Is is a good thing. And it feels

Heather Straughter 16:37
good. Yeah, like it does. It feels good. And that doesn’t mean that it’s always the right answer. But when it is, I think it’s for us. It’s what we tried to do. Let’s talk a little bit more about some of the other things we’ve done with Abby, people will say to us at Jigsaw from heaven, they’re like, Oh, what do you say yes to what do you say no to? And my standard answer is kind of it’s not our place. Like if people can fill out our application, have the documents that we need to sort of verify it, then they need what they need. And I remember there was those like mouth moisturizer, moisturizer. Yes. And I remember it was like, I think it’s the only time we’ve ever gotten that request. But I was like, Who are we to judge if this is what she needs? And I actually knew those because when Jake was in the hospital, those 117 days, they weren’t that sage green ones. There were pink ones. But they’re just these Can you talk a little bit about what they are because people are probably listening being like, what are they talking about?

Tabitha 17:29
There’s there’s two parts to it. There’s the mouth swabs. And then there’s the sage mouth moisturizer. They use it a lot on cancer patients that can’t swallow anymore at least to like cleanse their mouth and stuff. You know, Abby’s to bed, she’s high risk for aspiration. So she can’t take anything by mouth, but her mouth gets dry and yucky and gross. So we can’t just give her some water to cleanse in there because she’ll acid rain on it. She actually had a swallow therapist, who told us about that. I never knew anything about it before. And it’s just very mild, minty, refreshing ointment that you just put in your mouth, put on her tongue, you know, on the mouth swab. I mean, it’s huge. Like it her lips will go from dry and yucky to using that. And it’s like, oh, it’s just such a refreshing look like she just stepped out and put her lip gloss.

Heather Straughter 18:21
I like that that is a little bit of what we do to it. Right? It’s not just about the chair, or the equipment that you know, we talk a lot about medically, right? Necessary? Well, sometimes it’s medically convenient, right? Sometimes it just makes everyone like that just makes her more comfortable.

Tabitha 18:38
Yes. I think the first time I met you we borrowed a gait trainer. Oh,

Heather Straughter 18:42
the Okay. Yeah. So for those don’t know, a gait trainer is this piece of equipment where they can take steps assisted. So Jake’s off from Heaven also has an equipment exchange program, which is basically we have a storeroom that has equipment that people have either outgrown or no longer use, or for whatever reason, have donated to us. And then we open that up to our families so that they can borrow something. And sometimes it’s used as like, before you start the process of ordering a trial. It’s huge. If we have it, keep it for as long as you want. See if it makes a difference. And then at least you’re you’re making a request either from Jake’s or from insurance or from ever with a little bit of background. So I don’t remember that. But that’s great. I love that. Yeah.

Tabitha 19:28
And I think we ended up trying it out and realizing like it really wasn’t, Abby wasn’t gonna be able to use that equipment enough to go through the process of insurance or through Jake’s help for it. We ended up deciding not to get her one but

Heather Straughter 19:40
which is just as important as figuring out if it works, right. Honestly, right. Sometimes more important.

Tabitha 19:45
It might not have been that time, Heather. It’s gonna make me teary eyed right now. I think one point I was like, I just I think I gave you a hug and was just like, I don’t know. I don’t know how you do what you do. Like I could not I cannot be as strong as you in that situation, maybe maybe I could be

Heather Straughter 20:04
No, I always it’s hard to know till you’re in it, right?

Tabitha 20:08
You know, and to constantly be involved in, in children like Jake and Abby. And, you know, unfortunately, there is the sad stories where the person or child passes. Like

Heather Straughter 20:20
I sometimes think I was put on this earth, and it took me a long time to figure it out, or all of these experiences, but I was here for this, like, this is, who I was meant to be and what I was meant to be doing. And I hate that I had to figure this out at at this loss, like I have always said this to, you know, I would take being a shittier person or a shittier version of myself, and still have Jake 100 times over. But I feel like the best way to honor him is to do this work. And there is nothing I love more than than visiting with Abby, or as may or Mallanna, or any of these these kids that I’ve just gotten to know for so long. When I see Abby at 15. It just gives me this glimpse of what Jake would be like now. Right? You know, he would be a senior in high school, you know, and I sometimes picture Jake before the illness like what if he was just what if it was just even part two? You know what I mean? Like, you don’t expect your kid to die, no matter how sick they are? You know, I think that has been I don’t want to say it’s a common misconception, but it’s certainly has come up where, you know, especially after he died, where people were like, well, you must have known, you know, they say stupid things. No, we didn’t know, we did not think this was going to happen. We thought that we were going to keep keep them alive and keep living our best version of this life that we were in. We just didn’t see it coming. Right. You know, and maybe we should have but we did it because you live you live day to day and you take those moments, and you do the best you can with them.

Tabitha 21:46
And I think you don’t just to the other people that you have always, you know, you’re in connection with and you’ve helped and stuff. And I know, when Abby had her first really bad seizure, and we had out of the blue, and we were in Albany, med and intubated and everything all over again. I think you know, you posted on on the Facebook, you know, Abby needs prayers, and just these hundreds of people were just, you know, out there praying for Abby to and I mean, Jake’s help, Jake, let’s just say Jake, Jake has touched so many lives in so many different ways. I

Heather Straughter 22:19
think it’s what he was meant to do. Right? It was a short life, but a big life. Yeah.

Tabitha 22:23
You know, in the beginning, like we knew Abby was very sick. And we knew that she was never going to have quote, unquote, normal life. You know, as a parent, I think you always want what’s best for your child. So we were getting the gait trainer, we were hoping Abby was going to be able to walk someday we were doing the braces and every doctor’s appointment under the sun. And at a certain point, I think we just accepted,

Heather Straughter 22:48
that’s the word I was gonna use to what it was, it was

Tabitha 22:51
a punch in the gut. But I’ve also learned from that experience, at least beginning of life to not get punched in the gut anymore. As a parent of a child like Abby, we know she’s probably not going to outlive us. And it’s a conversation we have had. And that’s a very, very hard pill to swallow. And even when the day comes, it’s not gonna mean that we’re ready for it or whatever. But you learn to just accept and, you know, we actually just hired a new aide for Abby, thank God. And the other night, I’m just talking to her and doing stuff. And she’s like, Oh, my God, she’s like, you’re amazing. And I’m like, What are you talking about? She’s like, well, you’re talking to me, and you’re getting Abby’s feed ready, and you’re doing this and you’re cooking dinner, and I’m like, just my life to be, and she was like, No, I give you kudos. And I’m like, well, you’re gonna get there. We’re gonna train you. Right? Yeah.

Heather Straughter 23:41
It’s so you know, I think that acceptance that you talk about? is, in my mind the same as this place of Yes. Right. Like, I just gave it this sort of name. But that’s the moment I think, you know, because there is that moment of a little bit of like, denial, you know, nope, she’s gonna walk, nobody’s gonna do this, we can do this, you know, and this doctor is gonna give us an because I remember like, after the seizure, and after this hospital, stay being like, Okay, so we’re doing PT five days a week, when you think Jake’s gonna sit up and get his milestones back. And you know, they don’t really look you in the eye and you don’t really get an answer. But I didn’t. It took me a long time to sort of recognize, okay, there no answer. That’s an answer, right? And then also realizing that wait a minute, like, I don’t need him to go back to who he was. I can. I’m accepting where he is right now. And once the whole family is there, that’s, I mean, this sounds corny, but it’s almost when you start to live that life that you’re supposed to live. Because when you’re trying to change it, you’re not, you’re not you’re just you’re focused on what you’re missing, not what you have. And once you accept what you have, you just adapt and it’s pretty damn great. You know, it really is really, it’s I think people want to feel sorry, but it’s not

Tabitha 24:50
and don’t get me wrong. I have my days where I am mad at the world and I don’t want to talk to anybody. I don’t Nothing you say is gonna make me happy today. And I’m not even just I feel like that’s a way for anybody, not just to child’s you know, that has severe disabilities. But you know, there are days when I definitely get stuck in my own bubble and I do think about the what ifs and you know, what could have been and all this stuff and I at ages use the word survival. I guess there’s there’s probably a better word than that. But every day it’s it’s it is it’s a battle of survival. And you know, I think in the end, we’ve done pretty good.

Heather Straughter 25:21
I always think of, I think it was the fifth year of the fifth year of the Family Fun Day. And there’s this great picture of Abby and

Tabitha 25:30
Caitlin, let’s hang it up on my fridge still this day. Such

Heather Straughter 25:33
a good picture. Every time it comes up. It brings me such joy. So Caitlin, unfortunately passed away two or three years ago, I have no sense. I

Tabitha 25:40
think it was probably about almost about four at this point.

Heather Straughter 25:43
Did they know each

Tabitha 25:44
other? So we actually met Becky at Abby and her were both recipients of the marathon dance when they were okay. Abby was three, I think. But then we reconnect like so we talked x here and there. And then we reconnected through G Excel from Home and Family Fun Day,

Heather Straughter 26:00
because Caitlin was at Prospect at the same time as Jake. Yes, yes, that I knew. And I remember, Jake, God came home one day from prospect with a birthday invitation. And it was from Caitlin over le and then I didn’t put that together until Becky applied to something from Jake’s and then she was like FYI, like, I used to sit in the room at Prospect where you could watch with you. And I was like, like, it was just a little bit like worlds colliding. Because it was like, pre life. And then this life, it was just so special to me really like I was like, Oh my God, you know, you when when Jake brought that invitation home, like even though it it didn’t mean anything to him, right? I don’t even think we went to the party. But it was just this feeling of like, Oh, my kid got invited to a party, right? Some of that is hard to write like, that’s the part you. And I would always keep that because it sounds so vain to worry about stuff like that in the scheme of things. But it is it’s another part of the process of I don’t know if it’s grief or what it is. But just wait, you know, it’s not what I thought it was going to be. Or it’s not quote unquote, normal. Like, I just think of that picture. Because they’re both smiling. And they’re just, it’s just such a beautiful, I think they’re

Tabitha 27:09
even like holding hands. Pretty sure. And it

Heather Straughter 27:12
sure to me it captured that event, right, because the event was our biggest fundraiser for Jake’s help from heaven. But it was also this coming together. Of I always say like family, friends, donor sponsors. But most importantly, like our families, like sometimes people will ask me how many kids I have. And I say one I don’t want to talk about. And it’s not that I mean, obviously, I spend most of my what I have turned into, I mean careers the wrong word, but what I’ve turned into, like my life’s work is talking about Jake. So it’s not that I want to diminish or hide or anything. But sometimes it’s exhausting. Like, it’s, it’s not just exhausting. But just people don’t get it and I don’t want to explain it. Like sometimes the explaining to people is what exhausts me, it’s not the talking about you know,

Tabitha 27:56
there’s it’s 1,000% Especially like when you say I have a disabled child, like I feel like people are automatically geared towards autistic or you know, ADHD. And it’s very different from than what we go through. You know, actually, just this morning, a customer asked me how my Christmas was and how she’s like, Oh, well, how old are your kids? And I was like, well, 18 and 15. And that was just where I left it. You know, I

Heather Straughter 28:18
didn’t, there’s nothing. Yeah,

Tabitha 28:20
I didn’t say Well, have you just got out get what Christmases at all, then look at it the other day? No. She doesn’t ever know how many presidents she has under the tree or whatever. That’s never been a thing for her. You got to pick and choose and another customer a couple of weeks ago. He didn’t know about Abby, and he came in with a card with over $100 in it for me. You know, you meet really amazing people. And you meet some really crappy people too.

Heather Straughter 28:48
It’s a great reminder because I sometimes it’s so easy to just focus on the people who say the wrong thing. Our kids bring out the good in a lot of people.

Tabitha 28:56
Definitely. Until you’re in that position. Nobody could ever understand what it’s like, you know, and I used to, you know, same way with you and Jake, I used to think about like Caitlin and Becky like, we’ve always known Abby to be who she is. You know where Jake and Caitlin were very healthy, vibrant children and I always had even more compassion because I’m like, how do you go from that to that? It’s it’s huge difference. You know, I talk to you 100 People every morning and my job because I’m an opener for Stewardson some of them do you know about Abby but I don’t think anybody truly gets the magnitude of what it is. You know, I went to my girlfriend’s in North Carolina for the weekend and I had never bought I had been away from Abby for a week together when she was little we went on a cruise but I’d never been away from Abby when dad was in charge and I am very much in control

Heather Straughter 29:52
of special needs out of it sometimes dad in charge in general. Right right. I

Tabitha 29:56
was like he’s not sure she but I’ve I am a control freak I admit it. So to be away and give the reins up to dad and Andrew was, it was huge for me and I’m gonna how to best time I will can’t wait to do it again actually I think we need to pick that.

Heather Straughter 30:12
I always think too because you know we’re Facebook friends that I love that you love concerts.

Tabitha 30:16
I love it. I will admit I’m getting older I don’t know if concerts are exactly anymore. Literally I’m like oh what happened?

Heather Straughter 30:25
We don’t bounce back like

Tabitha 30:28
but yeah, we both I have definitely learned it’s important he’s going ice fishing this Sunday, you know I’ll be home with AB hanging out. We don’t always get that opportunity to do stuff together out thankfully we’ve come to a place where watching a show on Netflix and having a yummy dinner is just as good to us as going out at our feet and the lights you know and taking on the town but it is very important to still be your own person in this situation and there’s times I definitely struggled with that. I think I’ve gotten a lot better at it as the years have gone on.

Heather Straughter 31:00
I think it’s huge what you just said too though a as a parent in general but B as a special needs parent it’s so easy like even if you didn’t start out a control freak you become a control unit like there’s no way you can write life but to be able to still find yourself and whether it’s you know I used to sometimes just get in the shower and just turn on music and just stand there under the shower for 10 minutes just to like center yourself right you know or read a book like I remember I stopped reading for years I love reading you know so just finding something a you’re better for it but then you’re better for them to write right you know I think sometimes we get so locked into like just go go go but that pause can help you be better at all aspects of it

Tabitha 31:44
and it is so very you know Abby’s on a strict fever routine, the strict bed routine like I’m I constantly watch the clock. Yeah, even when Abby’s at school during the day, I’m like, Oh, it’s 11. That’s when Abby’s feed needs to start. And

Heather Straughter 31:55
over then you worry, right you’re like, Oh, I hope they’re feeding.

Tabitha 31:59
Right? But yeah, I’ve definitely learned to appreciate the small stuff a lot more than I probably ever would have. I’m gonna say it this way. It gets easier and it gets better. The beginning is very, very overwhelming. It’s so overwhelming. You know, I look back to not only did Abby’s paperwork say she was going to die at home and also said that we should put her in a home. And obviously I was like, yeah, no way. I will say, I could not put Abby at home. But I understand how people need that. You know, I’m thinking if 20 years from now, if we’re still caring for Abby this way, and Beau and I are both 20 years older. What is our life gonna look like? You can’t always answer the what ifs and life’s gonna throw you a curveball every once in a while. But overall, it does get easier and it gets better. Learn to ask for help when you need it. Take a deep breath. Deep breath is huge. Could a hot tub. my sanity? I’m telling you.

Heather Straughter 32:55
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