Kristin shares her journey as the mother of Milana, a child facing challenges similar to those faced by Heather’s son, Jake. Together, they delve into the profound struggles of parenting a disabled child in a society often lacking in understanding. Their conversation touches on their shared efforts to raise awareness about disabilities, exploring unexpected therapies that have greatly improved Milana’s quality of life, and much more.

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

Kristin 0:00
If you have a child that is medically fragile, the very definition is that life is fragile. The very definition is that one day and maybe not the next day

Heather Straughter 0:11
goes back to where I’m at earlier, like where people have this. It’s uncomfortable. So they want to try to find comfort or try to find a solution or something. But that’s the worst part. Right? Like I think about the data Jake died and there was nothing about that day, right? It was just it was just a random Wednesday in December. It was a Wednesday. We just got up and did our thing. Is bar true for everything. Everything. Like actually all of us now it’s true. But with our kids,

Kristin 0:33
we can see it.

Heather Straughter 0:39
Come on with me. It’s a we’re going to see what of Jake’s help from Heavens like OG families.

Unknown Speaker 0:48
We are seeing Kristin the

Heather Straughter 0:50
mom, and Milana who is my love I absolutely adorable Ana, when I see Mallanna I think about Jake and where Jake would be if he was still alive. They have very many similarities with the sort of undiagnosed severely ill, but she has come so far. And I just when I see the things that she can do now, it makes me like it makesme sad a little because it makes me think that if Jake was still alive, he would be doing some of the things that she can.

Hello, 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.

Unknown Speaker 1:36
Welcome to the show.

Heather Straughter 1:40
Welcome to a place of yes, today I am so excited. Recording. This week’s episode with Kristen and Mallanna was special to me in so many ways. First of all, Mallanna has just been part of the Jake’s help from Heaven family almost since the very beginning. But also we went on location to malanez house for this, and to be in her environment and to have her near us and part of this interview was just so special. And honestly, throughout as you listen to this episode, you will hear Mallanna and to me, as Jake’s mom to be in that environment just felt so natural. And the things that Kristin and I talked about just are the things that really are some of the most important things in my life. And I just I love that conversation. It just felt like home. So I’m sitting here with Kristin, and Mallanna. They are one of Jake’s help from Heavens like OG families, like we have, I think been working together for ever. I feel like it like as long as we’ve been in this journey. And for me, you know, I love all the families we work with. And I really just love the work of Jake’s help from heaven. But with you guys, I have always felt so connected to you. Like we would be friends, even if this was an AR journey. And also that Mallanna like there’s so much of Jake and Mallanna it makes my heart feel so good every time I see you guys like it’s almost like therapy for me. So I’m so happy to have you here. Like I hope you know how much it means that you’re on this show with me. Because it was so important we have, we have brought the podcast to your home. So thank you for letting us just be here. So to start, can you share with the audience a little bit about you and Mallanna and just your family? Yeah,

Kristin 3:27
so I’m also very happy that we can do this Mallanna is here with us. She’s 14, she has three siblings. Mallanna has lots of needs. She has epilepsy. And she has a visual impairment and a hearing impairment. She has some blood pressure issues. She’s had spinal surgery, we have bone complications, when we are in and out of the hospital quite a bit. All of our specialists are at Boston Children’s Hospital. And we have a pretty unique and challenging life, which I feel that I don’t have to explain too much to you, which is very nice. But to an outsider, it’s an unusual sort of life. Basically, at any time. We can have emergencies where we have to jump into the car and drive to Boston.

Heather Straughter 4:25
I think that is one of the things and you touched on it about having to explain to people right, like it’s hard. And it’s one of the things that I just Mallanna and Jake are so similar like as you were just listing, you know, sort of the various complications in life and it was like Jake right. It’s hard because with some illnesses, people can say, Oh, I have xy and z not that that is any less tragic or hard. But it’s just so complicated when it’s it’s a little bit of everything. It’s all these things and not one of them on any given day. One of them is the issue right like it’s either seizures, or it’s blood pressure or or its bones, and basically just front, whether it’s from medications or whether it’s from just the whole genetic makeup. Sometimes their bones get really fragile. Yes, it’s never ending, right. And it’s just it’s hard to share with other people. I’m trying to remember the first time that you guys apply to Jake’s, I remember how

Kristin 5:20
we heard about you. Mallanna was taking swim, PT, we would go every week. And when we walked in to the clinic, there was this beautiful picture on the wall. And I would always look at this beautiful picture. I didn’t know who Jake was, I didn’t know you. And one day I said to the instructor there the PT I said, I love this picture. I love walking in and seeing the sweet face. And now I know it was Jake. And he was had been to the same clinic with the same PT and she said, Oh, Mallanna is so similar to Jake, do you know Heather? And I said no. When she said, Are you you don’t know. Heather Mona and Jake are so similar. And I said no. And then I don’t know if I can’t remember the first thing that we applied for. I want to say maybe a piece of equipment, maybe a chair special tomato to

Heather Straughter 6:19
the first piece of equipment was a travel stroller. Looks like I can oh

Kristin 6:24
my gosh, I

Heather Straughter 6:26
owe for the trip. Yeah. Oh, my goodness. Let’s talk about that a little bit. I forgot about that.

Kristin 6:34
So Mallanna was little that was ago so so Mallanna had got approved for Make A Wish trip to Disney. And they and make a wish presented this to me. And they were like, oh, yeah, we do this all the time. And I was like, No, no way. No way. Can I do this? Like no way can I do this? This is impossible. Like we would need a like a car seat for the plane. We would need a stroller like we would need a billion gazillion things. I was like, I just don’t. I’m too overwhelmed. We’re not doing it. And they were like, no, no, no, we can make this work. And I was like, okay, but we don’t even have a stroller to travel with a travel stroller in that. Is that the first? Yes. You met up at my house? Yes.

Heather Straughter 7:15
I forgot all about that.

Kristin 7:17
I love that stroller. It was like we went to Disney with us. And I was like, so overwhelmed a bit by the trip and

Heather Straughter 7:26
everything coming. Yeah,

Kristin 7:27
I just felt like, Oh, okay. When you were in the room, I felt like you weren’t a person that I had to explain everything to. I’ve

Heather Straughter 7:36
said this about you guys a lot. And in some of our families like, this is the world I know, right? Because of the foundation and sometimes having to raise money for Jake’s and do stuff like I have to be this other person. But the person that I am, is this person, right? Like that is sitting here. I’m the mom of this that I’m a Special Needs mom is what I am right? You know that world, right? And I remember so fast forwarding a while I’m trying to think how how this came to be. But there were a handful of times that I would come and sit with Mallanna when you did other things. And I mean, Brian was so excited for me to come here today because he knows it’s been a while since I’ve seen you guys and he was just like enjoy your day like he knows this is like to spend time with Mallanna is just like to be able. It’s like I’m Jake’s mom again, right? Like I’m always Jake’s mom. But like, I don’t know, I just love it. And from that

Kristin 8:20
first day, you just went right over to Mallanna. She was happy. Like you just you just knew. And she knew you knew, as you understand it is really hard to let go and let someone’s Oh, absolutely my baby. And there have been a couple of times where I had to do something with the other kids. And I called

Heather Straughter 8:43
you I think made my heart happier. Yeah, Fielding. That’s right. Yes, that is absolutely

Kristin 8:48
right. I said, Can you just you know, be there with mana so I can run over into the activities on the field. I’ve never done that with anyone before? Because it just, it’s hard. It’s hard. I don’t know if there’s going to be a thriller? Well, I

Heather Straughter 9:01
was gonna say I think there was one time I was sitting here. I think she threw up on me. Yeah. And it doesn’t even like, yeah, it just doesn’t it just happened in the more important thing when like Milan was throwing up or Jake was throwing up was to make sure that you’re clearing their airway. Like it’s not about the throw up, right. Like, it’s not like it’ll grow. So it’s just kind of like okay,

Kristin 9:18
and then. Yeah, also, I felt like you weren’t going to make her feel better. Oh, exactly. Like even unconsciously. Yeah.

Heather Straughter 9:27
So that, honestly, is a theme that has come up in a couple of conversations like with other moms, that we’ve done on a place of Yes, and I think as a society as a world like not that people intentionally try to hurt feelings. We do live in a world where people don’t put the same value on kids like Mallanna or Jake, something will happen. And they say stuff not recognizing she’s a person too. And, you know, it infuriates me because you never want to be like I would never want to hurt her feelings in the same way I would never want to hurt Your feelings or? or any of our kids feelings? I don’t know, I always felt so much more protective of Jake and of Mallanna. And just because you have to be right,

Kristin 10:10
they can’t tell, they can’t tell us that thing that made me feel but you know that you know that they

Heather Straughter 10:16
have feelings too, right? Like, it’s you have to have eyes and ears all the time all the time. And you have to be extra vigilant and you just have to care extra because you need to be you just need to

Kristin 10:27
absolutely, yeah. So going back like that was I didn’t have to worry. When I called you, I just knew that. You know, it was it was a relief in a way and a special thing that is really hard to find.

Heather Straughter 10:40
So I’m going to stop for a minute and just talk a little bit, give my little like Jake’s help from Heaven Schpeel so that our audience knows more specifically. So Jake’s help from Heaven is a nonprofit that my husband, Brian, and I started after our son Jake passed away, and you hear me talking about Jake a lot. But he, like Mallanna had a very complex medical life. And unfortunately, it came to an end when he was four years old. And in those days following Brian and I just knew we had to do something we knew there were other families like ours, it has become without a doubt, like the biggest blessing of our life, to be able to work with other families like ours, and to be able to sort of provide opportunities for children and adults with medical challenges really, to thrive and to give them in the family things that they need. We know this life well. And we loved living this life. I think there’s this misconception out there where people, you know, not even for Mallanna. But like for you people will feel sorry for you. And that used to always make me so mad. I was like, Don’t feel sorry for me.

Kristin 11:38
People say I’m sorry, to me. Like for whatever I’m talking about. It just feels really uncomfortable. Yeah,

Heather Straughter 11:45
because you’re like, I don’t need your I don’t need that. Yeah, like,

Kristin 11:49
it can feel really lonely. It can feel so lonely. That is feel like unless I’m sitting side by side like with you, it doesn’t but or another parent who I know has a child like Mallanna. But in our house, in our everyday life going out into the world, you just don’t see it, or I don’t like I mean, we have a really specific routine. Especially for the winter, we’re in the house, a lot of honest teachers come to the house, I don’t see other families that look like us. So it can feel really isolating. And it feels like no one knows what you’re going through. Unless you’re talking to someone who really doesn’t know where you’re going. But

Heather Straughter 12:33
even that world is small, right? Like very small. There’ll be the conversation sometimes where you might say like, I’ll malanez seizures, or I’d be like, oh, you know, Jake has seizures. And then someone will tell you a story about like, you know, their cousin that has seizures, too. But it’s their cousin has seizures and is still going to high school or is still living. You know, I don’t want to say a typical life, but pretty close to typical life and in our life is anything but typical. Yes. You know, there’s

Kristin 12:58
exactly, you know, you can say, even a lot of teachers that are used to working with kids all the time, they’ll say, oh, did she get the medicine for the seizures? Yes. We’re good. What do you mean, it doesn’t work? Like it’s a type of epilepsy that medicines don’t work. It’s not working. And it’s like, well, the doctor has to figure that out for you. Right? And you take the breath thing? Yes. There’s many, many, many, many, many times where doctors have no idea what to do.

Heather Straughter 13:28
There is like, I don’t want to say shaming, because that’s not the word. But there is this sort of like, where people have this like, Well, no, you know, you gotta push harder.

Kristin 13:37
I honestly think that it’s uncomfortable for people are uncomfortable to know that there can be things that doctors can’t fix, yes. It’s uncomfortable for them to know that life could be that really that hard for someone and they don’t know what to say. And they’re like, Oh, you just have to get like, some outside help and things they’ll be like, I

Heather Straughter 14:02
actually think that is 100% accurate. It’s hard to live in this world where one day something can just your life can just change. So I think it’s like, I think it’s really hard. It’s I think you’re right. They’re just so uncomfortable with

Kristin 14:15
I think it makes another level of loneliness, because you want to connect with people, you want to tell the story. And then they don’t know what to say. And they by accident, say the wrong thing. And it doesn’t feel good.

Heather Straughter 14:30
And it feels bad because you want to talk about all your kids the same, right? Like that’s always that still is hard for me touching on what you said too, though, because it’s like sometimes I just feel like it’s not our job to educate. Yeah, it’s exhausting. The good version of me will like take the breath and be like, okay, you know what, if I explain it, then maybe this person can go forth or whatever. But sometimes I’m just like, why

Kristin 14:52
they don’t have the answer. I don’t have the energy to have the energy every day. I don’t know and your job is huge.

Heather Straughter 14:59
Right, like you’re a mom of four kids, and being a mom of four kids period is a lot. But you’re keeping Mallanna alive. Like it’s a full time job. You know? Yes, all moms are keeping their kids alive. But you’re challenged with Mallanna. It’s different. That’s right.

Kristin 15:13
Yeah, the things that I am that I do from Alana every day are not things that typical moms do the things on my mind, on any given day, a holiday or a birthday? What’s on my mind? Are we going to have an emergency today? Are we going to have to jump in the car? Am I going to have to explain to the other kids that we might be in another state for? Who knows? How long? Is it gonna happen today? Is it gonna happen in the middle of the night? What am I going to have to bring with me? Am I going to miss an event for the other kids? Like, most people don’t go to sleep at night thinking that that constant night, I have the seizure happen where we have to call the me or we can stop it at home? And we have to go yes. Is there going to be an ambulance, like, you know, situation. These are big things to live with. And balance

Heather Straughter 16:03
of, you know, you touched on this, and I remember this with Ethan, you have to drop anything at a drop of a hat to do what you need to do for Mallanna. But that comes at a cost for your other kids. I do think the flip side of that is, you know, I look at Ethan and I, you know, he’s a typical 19 year old, but he’s a good boy. And he is a kind person, and he really has a perspective that is unique. I know your kids have it too, right? Like their normal is different. I wish that you didn’t have to learn some of the lessons the way we’ve had to learn them. But

Kristin 16:34
they do have a unique perspective. And we wish we that they didn’t. But I mean, they understand you know, there’s so many types of privileges that people have. And there’s there’s health privilege, and able bodied bodies, and that’s something our kids know about that was that they didn’t have to but it’s also a good thing, too.

Heather Straughter 16:59
I think so I think it’s the you know, we’re, we’re putting kids out into the world that have, you know, like, we’re talking about kind of the burden of having to educate people, and that burden is also on them. But the more kids that have the perspective that they do, you know, it’s it’s better, right, I do think everyone deserves a place at the table. And I think like we you know, the siblings, Mallanna siblings, Jake’s sibling, like, they’re going out into the world sharing a story that is different.

Kristin 17:25
And they have fresh eyes. Yeah. And, you know, we don’t know how they’re going to change the world. And what they’re going to say, and the domino effect. Yeah, you know, I know, my kids, wherever we go, they’ll say, can a wheelchair get in here? And awesome. Yeah, like, more times? You know, unfortunately, the answer is no, the wheelchair can get in here. And they’ll say, How does somebody in a wheelchair get to enjoy this? Well, they can, you know, and they’ll say, that’s not right. That’s awesome. That’s a That’s a great story.

Heather Straughter 18:02
I mean, it’s, it’s terrible that the answer isn’t the right answer more time. But that that is just their norm

Kristin 18:07
is that is their norm. Yeah. You know, or do they have a handicap bathroom? Here are the questions that that they my kids will say, as

Heather Straughter 18:14
you know, as I was coming here, I was thinking recently, the things that we have sort of supported Mallanna with over the last couple of years. And I wanted to talk a little bit about this, because I think it’s so important, as we talk about just, you know, the needs, you know, we have supported with acupuncture and massage therapy. We have a great board. And we have this year, we have three new members. And so we’re always a work in progress, right? We’re always trying to manage exactly like what our mission is, and what we’re trying to do and make sure that every app we’re approving is mission is, you know, is it making people’s lives better? Is it creating opportunities? Is it impacting quality of life, like all of our kind of big questions, but sometimes around the table, you know, someone will I’ll say, like, how is massage therapy helping? Right? Like, how is why why are we doing this? And we always, you know, and we have their healthy conversations, you know, I think of two things. One is if people are applying for sort of alternative therapies, for lack of a better word, it’s because they believe in them and it’s going to work and who are we to say no, right? Like, who are we to be that person that says, oh, no, we don’t understand it. So no, Jake’s tries to always come from a place of Yes, right. Like if it’s something that a family believes in, if it’s something that the doctors they work with, believe in, it’s certainly not our place to say no, but Mallanna has benefited and I know you and I have talked about it, but like, I think she’s done chiropractic. She’s done acupuncture. She has hippotherapy. Yes, she does massage therapy. I don’t know that you’ve said this but I used to think this with Jake I used Jake used to do yoga for the special child and I always thought that was the most impactful therapy he did more so than any of the like, I would have gone to the end of the world for an Davis who was his yoga teacher just because I felt after yoga. He was yes, healthier. So I totally under Dannette but can you talk a little bit about the benefits of some of these different types of therapies and how they impact Mallanna? Yes.

Kristin 20:06
So I just also want to point out that every time she’s in the hospital in Boston Children’s Hospital massage they have on staff massage, their medical massage therapist that they did not when Jake was there, that’s awesome puncture is really, and so many of the nurses and even some of the doctors are trained in acupuncture and massage. That’s incredible. So every time we are in the hospital, I always sign her up for both of those. And it makes a huge difference when she’s in the hospital. So at home massage is actually her favorite thing while I have to do is tell her that it’s the day that her massage therapist is coming and she almost always smile. Massage is also the person that I will call when anything comes up. That’s making me uncomfortable. Okay. And we have we have been so lucky to find a therapist that we have like and she she comes straight to the home, right it will come right to the house. That’s and she has such a special relationship with Mahna Mahna, of course is one her heart like she does with everyone. Massage is the therapy that if she had a terrible seizure and even Tylenol is not working and she just can’t settle massage helps. Okay, that’s awesome. And acupuncture, a by another tiny miracle. She comes to our house, we found her She’s incredible. And she comes right to the house and acupuncture, I would say also super relaxing from Alana. But also it keeps her healthier. She will be like struggling with an illness like on its way out or congested, or whatever is going on, you know, the acupuncturist listens. And she almost like I would say like 99% of the time turns around within 24 hours. It’s incredible acupuncture, both of those, usually I know that the rest of Manas day not to schedule anything strenuous or school related because she likes to relax after those two. She has so much in her life that does not feel good. Like so many illnesses, so many med side effects, so many seizures, so many things. I can’t control that don’t feel good in her body that don’t feel good. And here are these two wonderful things that make it yoga. She’s smiling, you know, she’s holding their hands like massage. She She wraps her arm and leg around. Oh, at the time when she said she says okay, massage is done. And she will go in for a bigger cuddle like, we’re not done.

You’re like you’re not leaving yet. Yeah.

If I won the lottery, I wouldn’t have the massage.

Heather Straughter 22:59
Like all the time? Well, you touched on two important things. One is, you know, the immune system, right? And I remember this vividly from Jake, an ear infection, right? Like one of your other kids can get an ear infection. They go on antibiotics and 48 hours, they feel better and life goes on with Mallanna No, you know, I mean, I used to think that with Jake, I’d be like, there’s nothing worse than an ear infection because an ear infection, you know, was two rounds of antibiotics. And then maybe it was a sinus infection. And then maybe it was pneumonia. Like I felt like everything ended in pneumonia.

Kristin 23:31
It’s no bone. Yeah, it’s just very quickly, I forgot to say this to her. Her GI doctor actually prescribed acupuncture, her GI system, because she has some much constipation and gi motility issues. We’re kind of at the end of like trying all the meds and everything. And so finally, you just said Do you have access to acupuncture?

Heather Straughter 23:55
I love honestly hearing that, you know, Boston Children’s, and these different doctors are really embracing some of these therapies. And I think it’s really important. At our next board meeting, I’m gonna like bring it up. And you know, and I’ll probably follow up with you if you can get because I, I do think that’s a plus, right? Because traditional things don’t necessarily work and when you’re working with our population are not that they don’t work but they, they have limits, they have limits, and we are working with with kids and with individuals who, you know, they’re a typical, and it’s not one size fits all kind of care, you know, and then the other thing I want to touch on too is how important it is. And this is one of the things like you know, like I was kind of mentioning, like around the board table, like, you know, the podcast is called the place of Yes, because I used to always say like at Jake’s help from heaven, we want to come from a place of yes, because people would always ask us like, Do you approve this? Like, you know, it’s almost like they want a list of like, yes, we do this no, we don’t do that. And I was always like, if you can provide us with the requirements that we have, you know, which is like a doctor’s signature, a letter of necessity or script like you know, If you can do the kind of basic requirements we need, it’s not our place to decide what they need. I love that you have found for her, and that you can speak so much to the success of these things, right? Because I do think it goes back to what we were saying, like our job is to keep our kids alive to keep them safe to keep them thriving. If massage can do that for her if they can give joy in this hard life, yeah, yeah, no, I mean, you also touched on that, like, this is not just oh, I don’t feel well, today. This is hard. Life is hard. Yes.

Kristin 25:32
It’s very hard. I mean, you know, like what we would do as mom’s like, for just the one thing that brings us smile. My goal is just to see a smile. I think

Heather Straughter 25:43
she’s mad because we’ve been talking about massage. And she’s like, wait. She’s like, but I don’t see anybody.

Kristin 25:49
Right now, when he talks about talking about you love and Lisa comes.

Heather Straughter 25:54
So one of the things that we have talked about before, I think is, and I always feel funny talking about this, because, you know, we touched on this earlier, right? You never want to never want to say anything that we think would hurt like malanez feelings, or that would hurt Jake’s feelings or in any way, take away from this life that we lead, right. And I’m always very, like cognizant of that. Because I love my life with Jake so much. It wasn’t easy, but it was just it was just life. And it was and you love life, right? Like you love this life that you’re dope. I always find it tricky to find the right words. But there is this moment. And for me, I’ve talked before where before J got sick, I had this very clear picture in my head. I always for whatever reason was thinking, I would be walking on the beach holding hands with Ethan and Jake. And we would just be like on a family vacation. And we would be holding hands. And I remember when Jake was five, six months well before he got sick, but you know, obviously wasn’t walking like that was just I was like, Oh, this summer or next summer, we’re going to like go on a beach vacation. And this is what we’re going to do. And obviously that that vision never became a reality and that it just wasn’t our life. Do you ever have those moments like where you think of what you thought life was going to be? Yeah,

Kristin 27:06
I had a picture in my mind, of having a whole crowd of children, that we would do all these adventures together and have this flexible schedule and go all these places. And when you have a child with with these types of needs, that is not a reality. There’s all the feelings that come with, you know the feeling, but that’s what I wanted. And I can’t have it, there’s the feelings of not only can’t this child have it, but the other kids can’t have it either.

Heather Straughter 27:46
And that’s a different kind of guilt to there’s like the guilt of like you don’t want, you don’t want to be hurtful towards the Mallanna or the Jake. But then there’s the guilt of like, I don’t Yeah, they’re different. It’s different,

Kristin 27:57
many things that I have to say to the other kids, I can’t do this plan for you, or I can’t take this trip, or there’s a lot of things because of our situation. It’s your baby that you’ve loved so much that lights up your life. And it just kind of stinks that it has to come with so much pain. Yes. But that’s never to say that you don’t want the life you have.

Heather Straughter 28:26
I mean, Jake’s been gone 13 years now like I mean, it’s a long time. But I still like I still have a hard time saying it because I feel like wherever he is, I don’t want him up there being like, Oh, my mom wished she had something different. You know, like, I mean, that will bring me like it’s like a gut punch. You

Kristin 28:42
want to get angry? Because it’s really not fair that you can’t have just the good, like, you want just the good. Yeah, that was bad. These are really bad. And they’re really hard. Yeah, it’s actually a challenge to try to feel all the feelings is so complicated. And as moms we feel guilty, we feel guilty about feeling all the feelings, and whenever the feelings are not all 100% Perfect, gratitude. Wonderful. And it’s not the reality, there’s a lot of feelings, you know, you have a child that is medically fragile. The very definition is that life is fragile. The very definition is that here one day and maybe not the next day goes back

Heather Straughter 29:27
to where I’m at earlier, like where people have this. It’s uncomfortable. So they want to try to find comfort or try to find a solution or something. But that’s the worst part. Right? Like I think about the day that Jake died and there was nothing about that day, right? It was just it was just a random Wednesday in December. It was a Wednesday. We just got up and did our thing. Like it was just a day that ended horribly but it was just a day and that is the bar true for everything. Everything like actually all of us now it’s true. But with

Kristin 29:53
our kids, we can see it. Yeah, we can see it. We talk about it. We think about it in a car Instant. Yes, but the scary thing is it’s true brother that is we could I mean, that’s actually 100% True, but no one wants to talk about it.

Heather Straughter 30:10
Well, it’s true for everyone, the likelihood is less, right. Like for us, unfortunately, it’s just more of a, it’s there. Yeah. You know, going back to the part like, this is our life, right? And we wouldn’t trade it. I feel like I say this a lot. Like, it’s hard as the days are as lonely as the days are. It’s our life. Right? And it’s, it’s fabulous. And it’s great. And it’s, it looks different than others, but it’s the love and the, all of it, like, all of it is good. And you never want to minimize that or diminish it or anything. But what advice do you have advice for people? Because I do think, you know, I have this whole like place of yes mentality, you know, of trying to just trying to face the world in a really more positive light and not not wallow in the like sadness in the darkness. But really just, I don’t know, come from a place of Yes, try to try to be the good or find the good,

Kristin 31:01
I actually feel like the most good that I can do. And any mom similar to me is to be kind to myself. Because as a mom and the kind of mom that I am, I’m always thinking about Mallanna I’m always thinking about the other kids, but actually, that can really run me down to empty. And if I try to do all the things and do and be the best mom that I can be, I’m actually not going to get the job done on empty. Yep. And I can really go I know for me, I can really go into a spiral of feeling. Am I doing enough for Mallanna? Did I cover all the bases? And there’s always one more, there’s always something that you could feel like you aren’t doing enough of or doctor you didn’t pursue hard enough or a question you didn’t ask, I actually think that that’s not the best I can do. The best thing I can do. And for any mum to do is to find a really kind voice for myself, and take the time out to say you are doing a really great job because that’s something that no one is going to tell me every day if I don’t tell it to myself. My advice is to find even a minute of the day and be kind to yourself be kind about feeling all the feelings. It kind of sucks. You know, like your kid, you have to be in the hospital. I hate being in the hospital. Mallanna hates being in hospital, the worst place, it’s absolutely positively the worst. And like not trying to force yourself in a moment to feel gratitude. Yeah, there are things to be grateful for. But let yourself have that one moment to say like, this sucks. Other parents don’t have to do this. And just be kind and gentle to yourself.

Heather Straughter 33:03
In this world. I remember it so vividly. Like, oh, I should email this doctor. Oh, someone at the Mayo Clinic is doing this. Maybe this can help. Like there’s that endless cycle of what should I be doing? I should be working harder, I should be making this better. I should be like, I wish I had you in my ear all those years back because the other thing that really rang very true to me was when you have a moment when you’re just laying with Mallanna. And you know that she is telling you that you’re doing good. Like I know that feeling like I know, our kids are nonverbal. They can’t but but they express themselves and they make their thoughts clear. And I know, I know. I heard that from Jake. It makes me happy that you have that insight

Kristin 33:41
on as easy as it sounds because the days are very busy. And you’re like very, always very vigilant, like what’s happening? What needs to be because

Heather Straughter 33:49
you just can’t it doesn’t come natural. Like you said even if it’s if it’s five seconds, like just having that pause. Yeah.

Kristin 33:55
And I know there’s been times I can remember very clearly like where I’ve been very stressed out over something that what to do for Mallanna. Should it be this or should it be that and I felt like it was such a big decision. And then I would lay down next to her and she would just put her hand on my hand and I felt like she was saying like, not that big of a deal. It’s great. It’s all good.

Heather Straughter 34:17
You can get yourself so wound up but it’s just taking that pause and yeah, because your brain can just take you

Kristin 34:24
dark place. Oh yeah, you can keep going. And going that is actually very easy to do. It’s easy to go, like down a spiral go down dark. Yeah, though. Yeah. And things and they’re very real.

Heather Straughter 34:37
It’s like giving yourself grace. Right. Like, it’s like giving yourself grace and giving other people grace. Like I feel like both of those have not been natural for me always like, you know, I tend to hold people to a really high standard I tend to and maybe from just being Jake’s mom, you know, just do what you say Say what you do, like you know, just really being kind of vigilant about that and just realizing, you know, it did not matter. Yeah, you’re doing your best and not everything’s a big deal. I always felt like sometimes there were things I couldn’t control. So the things that I could control I just like really locked into. Yeah. And it’s, you know, it’s just giving grace like just relaxing about some of those. Yeah. Yeah.

Kristin 35:13
So that’s what I’m trying to say to myself

Heather Straughter 35:20
so we do this part where it’s like, you know, in the intended the end was that we I knew in this podcast, we would be talking about heavy things. And particularly once we got into it, and knowing like the guests, I was picking for the show, and the people I really wanted to talk to. I’m still Jake’s Mom, I want to talk about the things right, like, this is my world. So I’m sharing you know, I’m with people who share my world. So we thought that we would end this with like, okay, ask Heather anything, and have it be really light. What turned out is most people are asking like,

Kristin 35:49
dark questions. They’re not like who does your hair?

Heather Straughter 35:53
No one has asked me who does my hair. I will tell you Liza does my hair at simplicity. I love her to death. You do Pilates? I used to do Pilates. So yeah,

Kristin 36:02
I don’t know what to add.

Heather Straughter 36:04
I would give a shout out to lies that simplicity. She has done my hair since before Jake. So when we were having the funeral and everything for Jake, all of a sudden, you know, I fixated on the weirdest thing. And I was like, my hair’s a mess. My hair’s a mess. I need to and then Brian was like, You need to take like, Go Go get your hair blown out, like go take an hour and go get your hair blown out. I walked in. And in those days, I was such a. It was like right after he died. I was just like a zombie. And I walked in, I got an appointment. I walked in, and she’s like, what’s wrong? And I was like, Jake died. She’s like, what? And I was like, Jake died. And I need I need my hair blown out. And she was so gracious. You know, I mean, and she was young at the time, like in her 20s had a I think it had only one child, I think but she was so gracious and so sweet. And she was just like, gave me this great blowout. And she was like, just go like, you know, like, didn’t charge me. I feel like everybody in my life a little bit. Not everybody but like the people who are important to me. Even Liza, my hairdresser, like has a connection to Jake. Well, Kristen, thank you so much. And Mallanna thank you for being a part of a place of Yes, I loved having you so much.

Kristin 37:12
Thank you so much. Thanks for coming here too, to allow us to do this was

Heather Straughter 37:16
perfect. Everything about this was you know, like I said, I’ve been looking forward to this for so long and it was everything I needed and everything I hoped it would be. 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 Jakeshelpfromheaven.org