Heart to Heart with Anna

A-Kid-Again Family

September 05, 2023 Alison and Brian Blankenship Season 18 Episode 427
A-Kid-Again Family
Heart to Heart with Anna
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Heart to Heart with Anna
A-Kid-Again Family
Sep 05, 2023 Season 18 Episode 427
Alison and Brian Blankenship

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Have you ever wondered about the strength that it takes to parent a heart warrior child? What does the journey of raising a child with a congenital heart defect look like? Meet Alison and Brian Blankenship, parents to two children, one of whom is a heart warrior named Ian. Ian was born with a critical congenital heart defect, and his parents are here to share their intimate story of resilience.

This compelling episode takes you through the emotional journey of the Blankenships, right from the moment they first received Ian's diagnosis. They bravely face the challenges of countless medical procedures, and share the different milestones they have celebrated, each one a testament to Ian's resilience. There's also a deep dive into the strong bonds they've forged within the CHD community, a source of support that has proven invaluable over the years. The couple touch on the unique grief and isolation that comes with having a child with a heart defect and stress the importance of self-care in their fight against the odds. 

But that's not all. We also explore their experiences with A Kid Again, an organization that offers much-needed respite to families with children who have chronic illnesses. They share how A Kid Again differs from Make-a-Wish, the empathy it has nurtured in their daughter Haley, and the benefits they've reaped as a family. Through this enlightening episode, we hope to give you a glimpse of what it truly means to be a heart warrior family, and inspire you to find strength amidst adversity. Join us and discover an inspiring narrative of courage and love.

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

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Have you ever wondered about the strength that it takes to parent a heart warrior child? What does the journey of raising a child with a congenital heart defect look like? Meet Alison and Brian Blankenship, parents to two children, one of whom is a heart warrior named Ian. Ian was born with a critical congenital heart defect, and his parents are here to share their intimate story of resilience.

This compelling episode takes you through the emotional journey of the Blankenships, right from the moment they first received Ian's diagnosis. They bravely face the challenges of countless medical procedures, and share the different milestones they have celebrated, each one a testament to Ian's resilience. There's also a deep dive into the strong bonds they've forged within the CHD community, a source of support that has proven invaluable over the years. The couple touch on the unique grief and isolation that comes with having a child with a heart defect and stress the importance of self-care in their fight against the odds. 

But that's not all. We also explore their experiences with A Kid Again, an organization that offers much-needed respite to families with children who have chronic illnesses. They share how A Kid Again differs from Make-a-Wish, the empathy it has nurtured in their daughter Haley, and the benefits they've reaped as a family. Through this enlightening episode, we hope to give you a glimpse of what it truly means to be a heart warrior family, and inspire you to find strength amidst adversity. Join us and discover an inspiring narrative of courage and love.

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Speaker 1:

I really love that. It involves that whole family aspect to give illness a timeout or give illness a break. Allison's been through a lot, haley's been through a lot. I've been through a lot. Ian's obviously been through more than all of us, but we'll take this differently and I remember it giving me a timeout.

Speaker 2:

What are some of the consequences of having a baby with a critical congenital heart defect on a family? What is a kid again and how is that organization helping families of children with congenital heart conditions? What are some of the benefits of being an a kid again family? Welcome to Heart to Heart with Anna. I am Anna Jaworski and your host. I am also a heart mom to an adult who was born with a single ventricle heart and who is 28 years old. That's the reason I am the host of your program.

Speaker 2:

Today's episode is called a kid again family and our guests are Allison and Brian Blanketship. Allison and Brian Blanketship are parents to two children heart healthy Haley and heart warrior Ian. In addition to being a heart mom, allison is a working mom, a dance mom and a wife. Brian is a huge Buckeye fan and he enjoys watching basketball, football and playing golf. You would get along terrifically with my brother-in-law. Ian was born with commonary atresia with intact ventricular septum. Since Ian was not diagnosed in utero, his life did not begin as expected and his life has been full of surprises. That subtle superhero completes the Blanketship family. Ian has undergone two open heart surgeries, several catheterizations and has suffered a stroke. He is currently three years old, strong-willed, funny and sweet. Welcome to Heart to Heart with Anna, allison and Brian.

Speaker 3:

Hi, I'm so excited to be here.

Speaker 1:

Thank you for having us.

Speaker 2:

Oh, I'm so excited to have both of you here. This is going to be so much fun. Allison, we learned in the introduction that you did not receive a prenatal diagnosis, so can you walk us through how Ian's heart defect was diagnosed?

Speaker 3:

Yes. So Ian was born on a Saturday and his apcar scores. Everything was really normal. We were wheeled upstairs to the post-labor room and I was starving and I knew if we sent the baby to the nursery the nurses would bring that baby back. They reappear with the baby over and over again. We sent Ian to the nursery and Brian got me to cheeseburger. I ate that as fast as humanly possible and tried to get some rest and by 2.25 in the morning there was a doctor in the room telling us there was something very wrong with our baby. While we were being wheeled up to the ICU they told us that Ian had started turning blue and they had heard a heart rower.

Speaker 3:

By the time we got to the ICU, everything started moving very quickly. They had already done an echo, they were doing the umbilical line and it was all fast, so fast. And the only thing I really remember is the doctor wasn't ready to commit, like he'd already called Nationwide Children's Hospital. They were sending an echo technician down and he wasn't quite ready to commit to a diagnosis. And then he was. So he said I am pretty confident this is pulmonary atresia. And we didn't know anything at that time other than he implied it was serious. So he said you'll be transported to Nationwide Children's Hospital. Wow, yes.

Speaker 2:

You weren't going to be transported, so that's a new experience for you to be in one hospital and your baby to be in the other.

Speaker 3:

Yes, so I was leaving, whether they let me leave or not, so we did. I see Brian likes me, yeah.

Speaker 2:

I wonder where the baby gets the stubbornness from.

Speaker 3:

Yes, so they did send an OBGYN who delivered Ian. She came back and she said I'm guessing you're not going to stay here. And I said you're correct, because Ian was at Nationwide by six in the morning and we were there by about 10, 10, 30. Mainly because my epidural I was still numb so I couldn't get me where those epidurals they really work.

Speaker 2:

Yes, they do so 12 hours after delivery. You're talking about getting up and leaving at hospital and going to some hospital. You're a superwoman.

Speaker 3:

Yes, it was very hard.

Speaker 2:

Yeah, that would be super hard, oh my goodness. So, brian, what did you think when you learned that Ian had a critical congenital heart effect?

Speaker 1:

The first initial response was just complete shock, thinking are they talking to the right person? Because, again, going off of my amazing wife how she just mentioned that we were just trying to get some rest so I wasn't really sure. Did they come into the right room? Everything was good when he was born, everything looked great. So first initial response was immediate shock disbelief. Then the next response is we got to head up to the ICU floor right now. You got to go, allison, I'll carry you. We have to like, we're going so we can be there with our child.

Speaker 1:

Then, when they did end up giving us that diagnosis, my immediate response was to start looking up. What did that mean? They just gave us the pulmonary atresia within tax and then tricking us up to them. That didn't mean anything to me so I had no clue. So I was looking at Google, I was looking everywhere and it wasn't with the response of like, how am I going to handle this? As a like, as a trick doctor? It was how am I going to handle this with my family and be as supportive as possible? What I was reading was that it was going to be a tough road for Ian and I was a little overwhelmed about wanting to stay as strong as possible. So yeah, just educating myself, but not wanting to react, just needing to educate. And it was a lot to take it at first.

Speaker 3:

Yeah, so much self blame, Like when you don't know. When I think back to those initial moments, I felt so much guilt because, while it takes two people to make our beautiful baby, I carried him. And I felt so much guilt because I didn't understand. I just couldn't put it together. Hailey was fine. Hailey's an absolutely wonderful golden child. I mean, I felt so much guilt and I remember Brian mentioning that Ian might be restricted and all I could picture was him not being able to play. I didn't have a picture, I didn't know what that looked like. I couldn't understand based on what was online, like how his life would be impacted.

Speaker 2:

Yeah, I was in the same situation you all were. I had a child who was perfectly healthy and three years later, almost to the day, we had our second child, and it was inconceivable to me that I could have a child with such an unusual heart. And how could this happen? I don't remember blaming myself, but I do remember just being stunned and thinking I didn't do anything differently this time that I did the first time, except we had moved. We were in a newer location and I wondered if it was something environmental, but our doctors told us it was a fluke of nature. What did your doctors say to you?

Speaker 3:

Fluke.

Speaker 3:

Yeah, it was a fluke of nature. I struggled with that a lot too and I still do. I just bottle it down better now that I'm a few years in, because people will ask you. They'll say, oh, is it genetic and it's, why is that forward? I had someone once at CVS pharmacy asked me what I had done and I remember I was shocked. Brian, I think, wanted to go back into the store and yell and scream because this person had crushed me. But it's shocking Because I mean it was just a fluke. I found all those rules. I went without coffee and deli, meat and cheese oh, cheese.

Speaker 2:

We listened to classical music. My husband read Shakespeare to the baby.

Speaker 1:

Right.

Speaker 2:

We tried to do everything right, so it's a shock when something like this happens. So what is the biggest change in your life since you gave birth to a baby with a critical congenital heart defect? And I've thought about this one a lot, so I'm trying to I know, because there are so many changes and I asked what the biggest one was. And I think for us one of the biggest changes whether our kid had a congenital heart defect or not was the fact that now, instead of just one child, we have two.

Speaker 3:

Great. When I look back, one of the biggest changes for us was going just from one child to two children. So we had that, and then it's been a series of little things over the years. One of the ones I even picked up at Ian's most recent heart catheterization is. I'm catching myself being num's not the word, desensitized, maybe, it's like I roll with this stuff so much that I don't have as strong of a it's. Oh, this is where we are and oh, we're doing this and oh, we're running this test. And when I tell people everything Ian's been through and we've been through, they always get in. It's been their shock. There's so much empathy and meanwhile I'm like, oh, we're here, oh we're doing this, oh, Ian covered this again, Right, Like it's very You're on automatic pilot still.

Speaker 3:

Yes.

Speaker 2:

And yeah, I was like that for a long time too.

Speaker 3:

Yeah. And then when a doctor says something surprising, ian's doing, of course he's doing something weird or surprising what our baby does, the amount of times they've said we've never seen this, or it's rare. Whenever they're like, oh, don't expect this to happen, brian and I are like, oh boy, okay, it's gonna happen, because one of his superhero traits is being even more unique than we ever could have imagined.

Speaker 2:

Wow, that's amazing. I can relate. I can completely understand where you're coming from. I think our heart warriors are cut from a different cloth. Yes, yeah.

Speaker 3:

They are. And the other thing I've noticed myself a lot of times is milestones. When you're a first time parent, they talk about how important all these milestones are right and then in today's world with social media and stuff, it's like my child's walking, my child's potty trade. There's so many of these things and what I thought was fascinating is Ian learned to give his little finger for his pulse ox at such a young little age and he knew where they were gonna.

Speaker 3:

Listen to his heart, he could identify where that was and it would have been just a year ago, so what he would have been to. And he goes to get a liver ultrasound and the tech goes to do the ultrasound and he moves the wand up to his heart and he goes no, my heart, oh, he's still familiar with these tests, but those are like a milestone that there's a sticker for Right. So a big change was realizing these milestones just aren't, as they're not important, but that you adjust. I just remember always feeling constantly proud of how he responds to things. I mean, no, he wasn't walking, by the time he was a year.

Speaker 2:

Oh, no, he wasn't walking. No, he was not.

Speaker 3:

It was an indicator for his Fontan procedure because he had started trying to want to walk and then he stopped. He had just kept standing up, he wouldn't try to walk and then he had his Fontan in January. His six week clearance was in March. By Memorial Day that kid was practically running.

Speaker 2:

Yeah, it's funny how they can go from sitting to almost running, and I don't know about Ian, but with my little one, no crawling and I think it's because of the pain on the chest. So my child started to walk but he had a brother three years older who would play with cars and trucks on the floor and would crawl around on the floor scooting the cars and trucks. And so after a while he looked at his brother and he was like I guess I should be doing that and for the first time I saw him actually trying to crawl and then he completely stopped walking and I thought wait a minute, now we're going backward. But then he did eventually totally catch up.

Speaker 2:

But it was like you were saying earlier, the normal milestones for children who have never been on paralyzing drugs, who have never had their hearts cut open, who have never been catheterized and had all of the medical trauma that our kids have had. The milestones are the same for those kids who haven't gone through all of that and I would love to see a book that looks at a broad spectrum of kids with critical congenital heart defects who have had to undergo multiple procedures to see if maybe they have a certain standard of developmental milestones that truly do look different than kids who have had all those consistent minutes, hours, days where they're free to learn. Our kids are not free to learn when their arms are strapped to a board so they don't pull an IV out. Our kids are not free to learn and crawl around when they're on paralyzing drugs.

Speaker 3:

Then tummy time. I remember that interim phase before you do the Glenn procedure. You have the whole monitor and the nurse team would say yes, you can do tummy time. And so I was like, all right, let's try to put him on his tummy. He would turn so blue that it was like no, we'll just go ahead and lift you right up. Oh, absolutely not.

Speaker 2:

Yeah, it's a different world. I remember with my first child, every night we would have dinner and then I would do a bath, because after dinner we needed a bath, and then I would do baby massage, but he was always on his tummy. I didn't do that with Alex.

Speaker 2:

Yeah, because it wasn't comfortable for him. Not that I didn't do massage with Alex, but it was very different and that's why I think our children's developmental milestones of course they're gonna be different, but it would be so nice, wouldn't it, for new parents of a heart warrior it would.

Speaker 3:

Because, it would help you really understand. Go put so much pressure on yourself.

Speaker 2:

Yes, or on your child.

Speaker 3:

Or on your child. Yes, yes, great For on your child.

Speaker 2:

Absolutely, I agree with that, brian, what do you think was the biggest change in your life since you gave birth? You didn't get birth, but since your wife gave birth to a child with a critical congenital heart defect.

Speaker 1:

I do remember thinking just everyday activities. You normally don't have to think about it. You're normally thinking, okay, let's just go have fun and figure out how we're going to get this birthday present to the other child. Now, it's okay. How many people are invited? How many people have been vaccinated? Does anybody have a runny nose? Can you call all the people that are coming to this party please? You would be saying that to the host or hostess. There was a lot. You had to plan everything, every single thing, where. With Hayley, when she was born, it was okay. We got to plan it around NAP. We got to plan it around what time she's going to feed. But now we got to plan NAP feed. Yeah, who's sick? What time of year is this? Okay, so RSV is hitting really big right now, so you got to make sure to stay clear of that. I'm a much better flanner now because of that.

Speaker 1:

But actually I wanted to share one other thing too. So amongst listening, I always used to try to find the positive in everything. Now I listen and I engage with, instead of trying to solve everybody's issue, because I noticed when I wanted to share, everybody started to go oh, let's talk about the possibility of his heart maybe fixing itself. No, the heart's not going to fix itself. So I really wanted to learn to just listen to people. So I remember listening better to Allison and trying to just be in the moment with her instead of how am I going to fix this? So I remember that's how I changed myself personally and so trying to think about the family. I remember that was a big change for me. I still don't always do it, allison, but I try my best to listen instead of fix everything.

Speaker 2:

I think that's something that is so hard for dads and I know that I'm being stereotypical here, but I put together a book called the Heart of a Mother where I got mom's stories, and then I put together a book called the Heart of a Father where I got stories from men. Let me tell you there's a big difference between the way men think and the way women think and the men. That is what they feel. Their role is Protector, the one who fixes things, the one who is in charge and, like I said, protector. Most of the men that I talked to, they really felt very strongly that they needed to be the ones to protect the family. And you can't protect your family from CHD, it just happens.

Speaker 2:

So, what's the next best thing you can do? What Brian was just talking about Make sure that if we go to a birthday party nobody's sick. It does take a tremendous amount of planning. That, with a firstborn heart-healthy child, you never even give a second thought to, it's amazing. And you all had a child during or right after COVID, is that right?

Speaker 1:

Right before COVID I can't even imagine.

Speaker 1:

Yeah, we went into COVID. The funny thing is I remember being in an office because I still had to go to the office working at the bank. But I remember all the other fellow employees asking me how to hand sanitize constantly, how to wear a mask, how to protect their families. They were already consulting with me on how to protect your family Because I wouldn't come home. I was like, oh yeah, it's normal to come home and change in the garage. That's a normal thing to do. Change all your clothes, get rid of the clothes.

Speaker 3:

So we don't tell many people this because we rolled right into the pit right, but we already had masks, because Ian was born in August. We get home the end of August, shortly after Labor Day, hailey brought home a cold and we were like, oh OK, hailey has a cold, it looks like we're going to wear masks. We were taking all these precautions so when we rolled into the pandemic it was like, oh, don't worry, we already got our masks, we've got this, we know what we're doing. This is fine, yeah.

Speaker 2:

Yeah, it's amazing how, Brian, you became the expert all of a sudden. And I think one of the most amazing things with the pandemic is it gave everybody else in the world a taste of what we live with.

Speaker 3:

Yeah, it's so true, that is so true.

Speaker 2:

And Tonight Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patients.

Speaker 5:

Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazoncom, Spotify.

Speaker 2:

I love the fact that the proceeds from this CD are actually going to help those with congenital heart effects.

Speaker 1:

Enjoy the music.

Speaker 2:

And Tonight Forever. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Speaker 4:

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like to address on our show, please send an email to Anna Jaworski at Anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom.

Speaker 2:

Now back to Heart to Heart with Anna, One of the ways our lives change once we're part of the CHC or CHD community is that we can no longer take part in social activities the way we used to, which we've already started talking about. But, allison, tell me how your relationship with your friends and family has changed since you've had a baby with a critical congenital heart effect.

Speaker 3:

Wow, it was so hard to tell friends and family that you had a baby with a critical congenital heart to tell friends and family they couldn't come meet Ian. So first when we were at the hospital, when you're on the CTICU floor there's no visitors, and then when you move over to the other side, there's a limited number of visitors which, truthfully, it was very limited, so it was really just the grandparents that were on that list. And then when we came home, it was really hard to explain that we really had to live this bubbled light because I was horrified I mean, I won't speak for Ryan, but I was horrified of illness before Ian had his gland Truly horrified. And it was hard because we would tell people that we couldn't have visitors and some people would say, well, haley's around other kids. Of course she is, and she's around Ian because that would be her brother. We weren't going to punish Haley, so we had to treat the situation as what was best for just our family, which was limiting outside contact and trying to give Haley the opportunity to feel like she was getting typical sibling experience and then ask her friends.

Speaker 3:

It took me a long time. We had so many friends that were pregnant when Ian was born and it was wonderful and I was so happy for them, but I was so because they would have their babies, they would bring their babies home and they would do these adorable newborn shoots, and they'd have all these things that I didn't get, and I just was so sad and angry and then I didn't know what to do with it. And then I knew some of my friends knew I was sad and angry, and that was such a sad way to feel. I was sad for everyone. I will say, though, I learned something very important that I would tell Any heart mom is don't dismiss your feelings. It was okay that I felt that way. It took a therapist, by the way, to give me this profound advice, but my feelings were okay, they weren't wrong, they weren't bad.

Speaker 2:

You weren't a bad person either. You weren't a bad person. You were a good person in a bad situation.

Speaker 3:

Right, and it was okay that the picture in my head, everything had changed, and so it was okay to feel grief and sadness over what I pictured. That wasn't happening. So I would try to explain my feelings, but I never know if I really. I don't know if I ever did.

Speaker 2:

I don't know. Somebody who hasn't walked in our shoes really gets it, no matter how well you try and explain it. It's that feeling of isolation, the feeling of grief, like you were saying, and at the back of your mind wondering did I do something wrong? Could I have done something differently? Not that those feelings can result in a different outcome, but I just think it stays with us. I think it becomes part of our psyche. So I'm glad that you talked to a counselor. I think that helps. I have also spoken with some counselors in my life and it has definitely helped me.

Speaker 2:

That's for sure.

Speaker 3:

When you're a mom. I won't speak for Brian, but if you spend so much time as a mom focusing on your kids' feelings, that's so easy to forget about your own too, it is.

Speaker 5:

It is.

Speaker 3:

It is so easy to suddenly feel like you didn't even pay attention to yourself. Where did you fall on the list of priorities? So, having a counselor, having people to talk to, having a group of friends that I'm very fortunate. I have friends and family that I've worked very hard to familiarize themselves with in situations so they don't make statements like, oh, his heart will fix itself. They've worked very hard to say the right things. Of course, other heart moms always get it the best, but I'm very fortunate to have such wonderful people around that try so hard to put themselves in our shoes and that love our kids so dearly.

Speaker 2:

That's really a blessing to have people like that. Yeah, what you said, though, about the other heart moms knowing, what I found for myself was that they became closer friends to me than the people who previously had been close friends to me, for a couple of reasons. One of the reasons and I'm curious if this happened to you as well my friends whose children did not have heart effects, I think they went through a period of grieving and didn't know what to say. It was very awkward for them. The easiest thing was to say nothing and pretend it didn't happen, which was not helpful. I don't blame them. I probably wouldn't have known what to say in their situation either, but I just found myself constantly gravitating to other friends who also had a child with a heart defect, because we could spend time together and not even say anything, and we got each other.

Speaker 3:

I will agree with that completely. My heart mom friend, I never think before I speak with another heart mom, I can just express myself, I can just say the ugly, scary thoughts or I can have a little bit of a questionable sense of humor. I've learned that from my heart mom friends get that, that humor they understand.

Speaker 2:

Yeah, they don't get mortified, I tell. Just worry once about Alex came home with a partially paralyzed diaphragm and completely paralyzed vocal cords. After the second surgery I had to carry around a portable oxygen tank wherever we went Back in the day. I had a little umbrella stroller that I would put Alexander in and I had to put the oxygen concentrator on the little handle. I had Joey with me. We were going to a doctor's appointment so I said to my three year old here, hold on to the stroller while mommy opens the door. All these people were sitting inside. Nobody came to open the door for the mom with the baby and the stroller and the oxygen tank start right. So I left the stroller with Joey, zoomed around, opened the door, turned around and Alex was looking at the sky because the oxygen tank was so heavy it made the stroller flip back.

Speaker 2:

So thankfully he was strapped in and say you're laughing. It's okay for us to laugh about it because we know, oh my gosh, those things really do happen.

Speaker 2:

I told a friend of mine whose kid had asthma but had never had a heart surgery, and she was absolutely mortified and in tears. So I was like, no, it all turned out okay. But my heart friends, I don't know, they don't act as mortified. So it's funny what she said. I totally agree. We can have our funny sense of humor, our funny stories, and our heart mumps get it, or heart dads too, they get it, whereas my other friends, they just seem so terrified by everything I share with them. Are you kidding? That was not the worst part of that day.

Speaker 3:

No, don't you get yourself thinking like when they react horrified to like simple stories, you're like oh, I won't share this other story. Oh yeah, Like I'll just.

Speaker 2:

Oh, I have two Facebook pages. I have one Facebook page for friends of family who really can't handle it, and then I have my heart Facebook page. That's where I hang out. I hang out on the heart Facebook page every now and then I go to my personal page, but the people that really get me are the heart friends and so that's where I hang out. Oh, my family.

Speaker 2:

To be fair, they love my child so much that the thought of, oh my gosh you mean a pacemaker may be in the future, you mean transplant may be in the future it just mortifies them. And it's not like I'm thrilled about the idea, but it's just something that I've become aware of and I just know that's a possibility. I'm not going to let that mortify me. Those things might happen to save my kids life and allow my child to live even longer. So it's not something to be mortified over, it's just something to be aware of. And my heart friends, they get that.

Speaker 2:

None of us are thrilled about the idea of our children especially with a pacemaker, with a fontaner. That's an open heart procedure. For a normal heart, healthy person, a pacemaker can be done in the cath lab, but that's not the case for our kids, so it is more concerning. However, it also is a potentially life-saving device that would be installed. So, brian, we have become accustomed to a new normal After we hand our child over to a surgeon for open heart surgery. What has this new normal meant to you regarding the activities that you and your family took part in when Ian was a baby?

Speaker 1:

yeah, so the new normal. We did love outdoor activities because, again, that's a way to If we saw a runny nose, if we didn't have to really bring attention to it. You're not in an enclosed space, but you saw a sick child sneezing, coughing, you just kind of walk away with you, you just excuse yourself. Oh, we're gonna look over here at these pumpkins and this pumpkin patch while the rest of you stay over here. So, yeah, the outdoor activities were fantastic.

Speaker 1:

And then, going off of what you mentioned about sports, I remember trying to put on football games and I I remember Allison and I talked a little bit about doing what you're watching and getting to really like this sport, this activity, trying to do some of these things, and I, again, I'm pretty laid back. So I was like, oh yeah, that's no problem, let's do this. But it was a very good question. But the more and more now that I continue to, I really love sports. But I'm watching all these basketball games on these football games and I go, oh, there's a job for somebody Even would love sports and would be very involved. So normally your coaches have only played before, but your assistant managers, your scouting coaches, your Teleprompter, your cameraman, your uniform manager.

Speaker 2:

Those were my jobs. Happens when you have no athletic aptitude whatsoever.

Speaker 1:

So yeah, I remember sports just being. It was just thinking about it differently. So the new norm was Okay, let's figure out what activities we can do.

Speaker 2:

So the new normal became thinking about sports differently.

Speaker 1:

Yes.

Speaker 2:

I'm curious is Haley very athletic? Does she like to do sports with you?

Speaker 1:

She tries that she really wants to be good at Sports. But now we are certain, see that she really has a passion for Dancer gymnastics. So that's also a different sport that I'm not accustomed to. But looking at how athletic and just her ability to take some of the dance routines, remember them, yes, I'm watching it in a different way. I'm used to super physical, piled each other, get into fights, possibly type of sports, but watching Henry just be involved through dance, I am Allowing myself to be more involved and Appreciate her ability to do some of those things and Brian.

Speaker 3:

She'll be a great scorekeeper. She has fantastic math skills.

Speaker 3:

Right, so she's always trying to see who's the winner.

Speaker 3:

Yeah, so she's got. We got a scorekeeper on her hand, or scorekeeper on her hands, and Brian was talking about that and I had forgotten how I was very weird about having sports on when Ian was first born, because that's the other thing about having a heart warrior is the stuff you fear is crazy. I was afraid of what his life would look like when he was 20 years old, when he was not even one, but that's why I was always afraid of actually, what if he falls in love? Because Brian is so into basketball I think he's a watch basketball every day, all day, and he'd be perfectly fine, I was like, but Brian got to play it as well, right, and so I was always just afraid for him to fall in love with these activities.

Speaker 3:

Here I am, three and a half years in and Ian is obsessed with basketball. So all of my fears I'm getting nothing, which we just hadn't just filed that away and everything else that I've been worried about, that I've had zero control over. I have accepted this that boy would go outside on his trampoline and play basketball all day long.

Speaker 5:

Anna Jaworski has written several books to empower the congenital heart defect, or CHD, community. These books can be found at Amazoncom or at her website, wwwbabyheartspresscom. Her best seller is the heart of a mother, an anthology of stories written by women for women in the CHD community, and as other books, my brother needs an operation, the heart of a father and hypoplastic left heart syndrome. A handbook for parents Will help you understand that you are not alone. Visit babyheartspresscom to find out more.

Speaker 4:

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the hug podcast network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom For information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Speaker 2:

So in this segment, I am so excited to learn about a kid again Because, brian, I know you have something special to share with me about this organization and how you found out about it.

Speaker 1:

Yeah. So when Ian was born, during some of my googling I was Trying to again figure out how I could support this family and I was just really looking for Something to give us help, something to give us some guidance. And I remember Watching sports. I knew about make-a-wish foundation, which is going to be similar to Kid again, but then I kept doing some research. I know Allison and the hospital. They helped us get in touch with kid again. I know Allison took it and ran with it.

Speaker 1:

But Kid again has been huge. We have gone to several of their events, which happen to typically be around sports or activities, which is fantastic, and it's a great way to involve anybody who might have been born with a disability and it's everybody in one world, one environment, one area and all just knowing, hey, we're all here to enjoy the day, enjoy what we can out of this event. And Kid again has just been a huge help and I'm thankful Allison was able to get involved so much through this because it's been great for the family. So she took it and she's taken it to the next level, which has been great for the rest of us.

Speaker 2:

So tell us about that Allison. How have you taken it to the next level?

Speaker 3:

I reached out early on and I've applied to be a Kid again, fam, which is an opportunity to try to do more for the organization, which is that a very fun opportunity, and that's what introduced me to you. It's right up my alley because when you're in one of these organizations that do so much for your kid, you really want to try to figure out how to give back, and I wanted to do more than just financial donations. I want to help out some of those volunteers or parents, and it seemed like such a fun opportunity for me to give back to an organization that lets my whole family, but with emphasis on Ian. This is an opportunity for Ian to get something special that isn't a sticker after a needle prick.

Speaker 2:

Right, yeah, it's not getting something good after something that causes medical trauma, right it?

Speaker 3:

gives these kids this incredible opportunity and it gives them the chance to feel special and just be with other kids like them.

Speaker 2:

Not all of my listeners know what this is because it's not in every state. For example, there's not one in Texas. So can you explain for my listeners who don't know what a kid again is, because it's not make a wish, but it is like make a wish, but it's so much more involved and I did have the CEO from a kid again come on and I'll put that in the show notes in case anyone would like to listen to that. But I'd like to hear it from a parent's perspective.

Speaker 3:

A kid again has possibly my favorite tagline. It says giving illness a time out, and it feels like that paints the picture perfectly. These activities give these kids an opportunity to forget every single thing they've been through.

Speaker 2:

Tell us how a kid again is different from make a wish.

Speaker 3:

So a kid again gives monthly events of all kinds of different types. Yes, a lot of them have been sports related, but there's the zoo, there's the symphony, there's the historical society. They try to have an event every month that would appeal to a bunch of different interests for these kids and it gives them also a private opportunity. One of my favorite events is actually coming up in June and it's dream night at the zoo and I love it. The kids get a few after hours at the zoo and it feels so nice to be around all those crowds. We did it last year and they had some rides.

Speaker 3:

They added rides to the zoo which I just was really cool. So Haley got to do a roller coaster, Ian got to do a spinny thing which I did with one of the scrambler. I still do not like spinny rides. I don't mind to take a ride and Ian's like holding on and he's just smiling and screaming and it was just wonderful. It was absolutely wonderful and we've always loved the zoo. The zoo was one of Ian's first outings that we did as a family of four. Was the zoo Right? It was outside. Brian had some serious stroller navigation skills that man can get out of a crowd like no one I've ever seen.

Speaker 1:

It's my point guard basketball skills that I have, I can see the path.

Speaker 2:

I love it. I love it.

Speaker 3:

Yes, I'm really looking forward to the zoo, so the organization has just been so fun for us, and the other thing about it is we've really tried to do things as a family, and that's what a kid again let's us do. And Haley has been exposed to Ian as well Harry's older, though right, she has been exposed to so many different kids, so many different kids.

Speaker 2:

Because it's not just kids with heart defects, but it's all kinds of chronic illness.

Speaker 3:

Yes, and Haley, she doesn't point Things don't stand out. She asks questions sometimes when we get home. But one of the things this year she won an award at school. She won student of the quarter for the trait empathy, yeah, and we were both so proud and I think this organization has also been one of the things that's really helped her Really nail that trait. She's even been selected to do a buddy program at school because it doesn't stand out to her anymore. She's used to seeing these kids Sure yes, kids with so many different kinds of illness.

Speaker 2:

So, brian, what advice do you have for families who are considering whether or not they want to join a kid again family?

Speaker 1:

My advice would be to absolutely go for it. I think Allison did on a few of the points where it involves the full family and discuss throughout this podcast that you don't have to be worried about illnesses, because everybody going to these events knows if you're sick, you're going to stay home or it's a soul Different. I really love that. It involves that whole family aspect to give illness a timeout or give illness a break. Allison's been through a lot, hailey's been through a lot. I've been through a lot. Ian's obviously been through more than all of us, but we'll take this differently and I remember it giving me a timeout.

Speaker 1:

What was that first event we went to? I think it might have been Brazil, but it was outside and I just remember looking at every child, every family rocking through the gates, going this is special, this is for us. We get to enjoy this because of what we as a big group or I don't even extend the word we as a big family of people who have been through illnesses, have experienced and we get to have a timeout. So it was a fantastic first event. So I remember going OK, allison, what's the next of that? Like, when are we doing this next? Yeah, my biggest piece of advice would be absolutely please think about joining it, because it just made a big, big change to us and allowed us to spend more time with each other.

Speaker 3:

And don't worry, don't think it's my kid too young for this, don't worry about that. There's so many activities that will just get your kid and you out in the world, and it's really a great experience to see that you are not alone.

Speaker 2:

Absolutely, absolutely. I love that. Thank you so much, allison and Brian, for coming on a program today and sharing your advice and your experiences with us.

Speaker 3:

Thank you so much for having me Again. I was so excited to do this Fun for me to do with my husband as well.

Speaker 2:

And now this is awesome. Thank you so much, Brian, for coming on the program today.

Speaker 1:

Yes, thank you. Yeah, it was very important for us to be able to share our story, so, thank you, we appreciate it.

Speaker 2:

I hope that other people who are listening to this program, who live in an area where there is and a kid again program, will check into it and see what they can do, because it seems like you have a new extended family.

Speaker 1:

Yes, we do, we do.

Speaker 2:

I'm jealous. I'm jealous. When are y'all going to come to Texas, right? I know my kids all grown up now, but I would be like you, allison, I would want to be helping out, to find out what I could do to help, because I do think it's a very worthy organization, and anything that can help us normalize activities and help us feel like we are part of the community without being afraid of being around too many people or especially being around people who are sick. I'm all for that. I am all for us optimizing opportunities for our kids to be out in the world doing fun, meaningful things, and as a family, I think that's really outstanding. Not all organizations listen to the needs of the whole family, and CHD does not just affect one person. It affects the whole family, and in very different ways, wouldn't you say?

Speaker 3:

Yes, meeting so many different families to it really opens your eyes as to how many different things that are out there that can really impact children. But it's one thing when you see it on a TV show, right. It's a whole another thing to be right next to a child with cystic fibrosis.

Speaker 2:

Yeah.

Speaker 3:

And to talk to this mother the hurdles she's had to go through. It really opens your eyes to just see it and be living it as a family, as this big organization.

Speaker 2:

Absolutely, friends. That does conclude this episode of Heart to Heart with Anna. Thanks for listening today. I hope you found this program helpful. Drop us a line on Facebook, youtube or Instagram to let us know what you thought of this episode. I'll put a link in the show notes. And remember my friends, you are not alone.

Speaker 4:

Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to Heart with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.

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(Cont.) A-Kid-Again Family
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