Heart to Heart with Anna

Encore Presentation of "Siblings in the CHD Community"

February 19, 2016 Anna Jaworski
Heart to Heart with Anna
Encore Presentation of "Siblings in the CHD Community"
Chapters
Heart to Heart with Anna
Encore Presentation of "Siblings in the CHD Community"
Feb 19, 2016
Anna Jaworski
What can we learn from siblings of CHD survivors? How can we help siblings and how important is it for them to be there when a brother or sister is in the hospital? Tune in to find out!

Support the show (https://www.patreon.com/HearttoHeart)

Show Notes Transcript
What can we learn from siblings of CHD survivors? How can we help siblings and how important is it for them to be there when a brother or sister is in the hospital? Tune in to find out!

Support the show (https://www.patreon.com/HearttoHeart)

spk_0:   0:00
look into another encore presentation of heart to Heart With Anna. This show is near and dear to my heart because one of the guests is my own son. I must confess that I really worried how Alex having a congenital heart defect would affect my heart. Healthy son Joey. This interview is from Season one of Heart to Heart with Anna and features guest Joey two or Ski and Laura Brian Thes. Two hearts Siblings brought tears to my eyes. Guest on Meyer of the sibling support project provides us with some great advice. I hope you enjoyed today's encore presentation.

spk_2:   0:37
Welcome to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH D or congenital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an ID Dworsky heart to heart with a show for

spk_1:   1:06
the congenital heart defect community. Our purpose is to empower members of our community with resource is support and advocacy. Having a chronically ill child in the family will have an impact on all of the family members, including healthy siblings. According to the World Facts and Statistics on Disability and Disability issues, about 10% of the total world's population, or roughly 650 million people, live with a disability, according to the Americans With Disabilities 2000 and two report, 11% of Children aged 6 to 14 have a disability. This amounts to four million Children, with heart defects being the number one birth defect. It is easy to say that millions of families around the world are impacted by congenital heart defects. Because families of chronically ill Children frequently have healthy Children as well. The healthy Children are often overlooked when the ill child is in the hospital. Children's responses to having a chronically ill sibling often vary depending on the age of the healthy child, especially in relation to the edge of the chronically ill child. In some cases, healthy Children can develop anxiety, acting out behaviors and depression. In other cases, the healthy Children seem to become more mature and compassionate than their peers don't have. Chronically ill. Kipling's much research has been conducted on ways to help healthy Children in a family with a chronically ill child learned to cope and dry despite the stress and anxiety, have all been carrying for a chronically ill child. This is why our topic siblings in a congenital heart defect community is so important to discuss this topic. Our guests today are siblings Laura, Brian and Joey Dworsky and director of the sibling support project Don Meyer. Laura Ryan was the oldest of four Children when her little brother Carl, was born. The siblings were all three years apart. So Laura was 12 years old when Carl was born, and she also had a brother who was six years old and another one who was nine years old. Unfortunately, when Carl was born, a family immediately realized something was wrong. But nobody knew how bad things were until Carl was sent to Texas Children's Hospital in Houston. Ah, 100 miles from their home. Carl was born with a serious heart effect known as total anomalous pulmonary Venous Return, or Ta PVR. Since Laura's little brother, Carl, was born in the 19 fifties, now one of the oldest, he had PBR survivors in the United States.

spk_0:   3:32
We'll meet

spk_1:   3:33
you. We'd warsi another sibling to a brother with a congenital heart defect. And on Meyer, director of the sibling support project. Later in our show, Welcome to the fourth episode of Heart to Heart with Ana Laura. Thank you, Anna. It must have been so difficult for you as a preteen with three younger siblings. Especially when the baby was born with a serious congenital heart defect. Do you remember when Carl was born?

spk_3:   3:56
Well, that's been over 55 years ago, Anna. And some things. For instance. I'll remember when Dad called us to give news of the birth and said it was a boy. I did another baby brother. Oh, okay. Well, I really thought I knew what it was like to have a baby brother, so I thought, No big deal, but bore without wrong. By the way, call. Wait over £9. Mom's Lord.

spk_1:   4:25
Wow, a nine pounder. That's a big boy.

spk_3:   4:30
But after that, he started getting sick. I'm able to hold this formula down. It was initially thought that Cole was allergic to the milk. He cried a lot. This baby brother was definitely different.

spk_0:   4:45
How did your

spk_1:   4:45
family react to that difference?

spk_3:   4:48
Well, they tried to do everything possible to try to find out what was wrong with him, to see the doctor trying to get to the root of a problem.

spk_1:   4:57
So I imagine maybe they changed his formula

spk_3:   5:00
yes, many times because the doctor still thought it was formula related. But every time I would try a new formula. Neither of the farming work.

spk_1:   5:13
All right, Well, any time a new baby comes into a family, there's a lot of change. What was the most challenging change for you is a 12 year old young woman. I mean, it sounds like your mother was having challenges just feeding the baby and taking care of him that way. But what challenges were you facing?

spk_3:   5:30
Well, the most obvious tang, of course, was, but not only that. We had a new baby in the house, but call with sick cross baby, and he wasn't getting any better. The onus contained we pretend mom, primal family, but nothing too proud. Whoa, assistant to numerous local doctors in that time, remember, call surgery wasn't until he was four months old, which is a long time to deal with the sick babies who wasn't improving bartending us, other Children and her other do. This is the mother and wife. Bed was right course, but helped when he could. It had to be a terrible strain on the family, Nana.

spk_1:   6:15
So I can just imagine. I can just imagine that this time you were in school, your other one brother was in school. The other was probably still at home with your mother. Correct. So she had two little ones to take care of a toddler, which is a handful in and of itself and then a sick baby. Four months before they finally found out what was wrong with him. What was the event that caused them to realize that it was his heart?

spk_3:   6:41
The last doctor, she took it too. Notice his color because he was a blue baby. And he immediately thought it was something wrong with his heart and sent my parents throughout. Houston called him, made the appointment and the risk. We were farmed out to different relatives home to stay, because mother dad had no idea how long it would be there.

spk_1:   7:04
Now, when you say you were farmed out, does that mean that your parents were able to say goodbye to you? Or did they go to disappointment. And then all of a sudden I have to rush to accuse Stan and maybe an answer and uncle had to come pick you up in school and tell you what was going on

spk_3:   7:19
right? We knew ahead of time that he was really sick, but we didn't know the severity of the problem until they went to Houston and copies from the doctors there

spk_1:   7:30
and then

spk_3:   7:31
and we were different relatives home. It's not like the three siblings were together. We were separated, which probably didn't help things.

spk_0:   7:41
You have a higher calling. So

spk_1:   7:44
So you only separated from the baby brother who was sick that you were also separated from your healthy brothers.

spk_3:   7:50
Quick. So even though being normal sibling, we had our usual little disagreement. But basically, in all families, you will know they're filled with the bond, the queen's siblings. And we didn't have that because we were different home.

spk_1:   8:09
That must have been so frightening for everybody. But you were almost like a little mother. Also, since you were so much older than your siblings did that cost you a lot of concern.

spk_3:   8:19
Well, I was only love, I understand, But not old enough to understand the severity of the illness. So yes, instinct being on the proverbial girl. He hasn't mother in the end, I think. But I was not able to use that because they were in Houston with Call the hospital and we were home.

spk_1:   8:41
So when did you find out that it was a heart defect? It sounds like they rushed to Houston, but they probably didn't know exactly what the problem. Waas.

spk_3:   8:51
I really can't remember the circumstances and how it all came to play, but it probably didn't take them long to figure out that it was a heart problem. My parents were there a month with Cole, and I can only remember going to visit him one time. But you have to remember Anna back then. Years ago, Children weren't allowed in hospitals and especially our Texas Children's Hospital, were killing so severely injured.

spk_1:   9:23
That's right. A lot of times they were afraid that the younger Children, although you weren't that young. But they were afraid that the Children would bring extra germs into the hospital and possibly compromised the health of the child who was already sick. Correct. So who took you to the hospital that one time you were able to see Carl,

spk_3:   9:44
the aunt and uncle that I was staying with. One brother stayed with grand parents and another brother was with another and knuckle. I remember going with my aunt and uncle. I was very bothered by the fact that I could not see him. I guess a picture's worth 1000 words. And I mean, that was my baby brother. I wanted to see how sick he was. But I do remember Bei very upset about the fact that I couldn't see him.

spk_1:   10:14
Yeah, I'm sure that was very distressing, but we can tell our listeners that it has a happy ending. You said he was at the hospital for a month. And can you tell us a little bit about the recovery period? Well, hey,

spk_3:   10:28
did a very good recovery. Just bounced by. It was sort of rifle is, of course. And it's so well for it again. Wait again. And we all felt much better. We even went to visit another family who had another tile that had the same operations call.

spk_1:   10:48
So, overall, how do you think the hospitalization impacted the whole family?

spk_3:   10:54
Very dramatic. A very dramatic, Pam for all of us. I know how traumatic it was for me. I can't imagine why. Can't imagine really what my parents went through. It was a very long time for the whole family and extended aunts, uncles, grandparents.

spk_1:   11:12
Yes, but I'm so impressed. Lower that your whole family really did come together. They took care of everybody. Everybody was taking care of each other. I mean, that's very heartwarming story.

spk_3:   11:25
Yes, we're basically a very close family. My dad, of course, was home and would go when he could. I can't remember the details, but he had a job he had to keep. We weren't living at the home. I'm sure Dad was staying at the home during all this and run by control Houston when he could. But yes, it is a time when the power family had come together in him.

spk_1:   11:49
So, Laura, if you could give any advice to parents who are listening today, who maybe have a 12 year old child or preteen and also have a child who is sick, What advice would you give them to help the child? It was like you, the teenager preteen who is left behind

spk_3:   12:06
Well, first, I'd like to say that I know my parents did the very best they could at that time under the circumstances. But I think one very important thing parents need to remember it's communication with siblings that plays an important role and try to give the siblings as much information as they possibly can based on the siblings age and understanding. Of course, I think that's one of the most important.

spk_1:   12:36
I can't agree with you enough. Absolutely. I think communication is key. Unfortunately, Children have vivid imaginations that can run away with them when they're in a very stressful situation. And like you're saying just having a photograph or just being told That's Carl's sick that he has great doctors taking care of him and we helped it bring him home again Soon. I'm sure that would have been a lot to relieve your mind,

spk_3:   13:01
right, And I'm sure my parents and an aunt and uncle did that to the best of their ability at the time. It's just that, in my mind, 12 years old, you form a teenager's the big sister. It really affected me that so I couldn't see him. So in my mind I really didn't know how. Well, how sick? Iwas I don't remember that being a very big problem,

spk_1:   13:24
I can just imagine. Thank you, Laura. I appreciate you sharing with our listeners. Now we need to break for commercial, but when we get back, you get to meet a very special person who is close to my heart. Find out who that is and what his experience Woz having a baby brother in the hospital undergoing open heart surgery and then watching his brother go through it all

spk_2:   13:44
over again. 17 years later, when an urge or city has written several books to empower the congenital Heart Defect or C H D community, these books could be found at amazon dot com or at our website www dot maybe Hart's press dot com. 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 Hypo Plastic Left Heart syndrome. A handbook for parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource Is and information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the C H D community. Visit Heart to Heart with anna dot com. Today you are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com. Now back to heart to heart with Anna Heart to heart with a show for the

spk_1:   15:39
congenital heart defect community. Today we're talking with Laura Lyons, Joey Dorsey and Don Meyer, and our topic is siblings in the heart community. A congenital heart defect unity. As a matter of fact, no Ryan and Joey Dworsky are siblings, brothers born with congenital heart defects, and Don Meyer is a director of the sibling support project. We just finished talking with Laura. Brian's sister, Barbara, offered him a total anomalous pulmonary venous return or ta PVR. Now we will turn our attention to Joey Dworsky. Sherry Dorsey is the oldest son of Frank and Andy Dworsky. When he was one year old, he started begging his parents for a baby brother. Having two female cousins his same age just felt outnumbered. And he wanted to even things out. When his mother told him that God might give them a sister. Joey said, Don't worry, Mom.

spk_0:   16:27
Dad works at the hospital. If we have

spk_1:   16:29
a girl that I can just switch it out for a boy before he comes home. Clearly, Joey was determined to have a little brother right before Joey's third birthday, Alexander divorcee was born. Little did anyone now that Alex was born with the serious congenital heart dessert. Within Alex's first year of life, he had to open heart surgeries in the hospital. 3.5 hours from their home, Joey's World was turned upside down Alex and had another open heart surgery when he was 17 and Joey was 20. We'll meet Don Meyer, the director of this sibling support project, later in our show. Welcome to heart, Heart within a Joey.

spk_4:   17:05
Hey, how's it going?

spk_1:   17:06
It's going great. So you just keep everyone and to my first point to let everybody know that not only are you Alexander's big brother, but you're also my son, and I want to thank you for coming on the show today. The funny thing is that you and I really haven't talked much about what it was like growing up with Alex's Big Brother. Can you tell me what you remember from Alex's first surgery when you were just three years old?

spk_4:   17:28
Well, thank you for having me on your show. I appreciate it. I'm really honored to be here. Remembering what out of works His first surgery was like when I was three years old is a little bit difficult, but there are some things that stand out more than others. For one thing, like Laura had with her family whenever she was going through a crisis with discovering her little brother had a congenital heart defect, I had an extensive family support, and that's one of the big things that I remember from my childhood. When Alex went into his first surgery was I always had a police FBI was had loving family there to take care of me. I would say of my aunts and uncles houses with my cousins, and they would help distract me from the more serious situation that was going on in the hospital with you and Alex and my dad.

spk_0:   18:15
So what is your

spk_1:   18:15
most vivid memory from when you were three? You were three years and two months old when Alex had its first surgery, and then you were three years and nine months old when he had his second surgery, which must vivid memory of those times that they kind of blur together.

spk_4:   18:29
They do for sure. It's one big feeling more than anything else. And there was things that I felt more than anything was. There was a lot of fear coming from the older members of the family. My parents, you guys especially remember everyone being very scared about Alex, and I remember thinking that he was gonna be okay. He had to be okay. He was my little brother. Like God had to take care of Alex. I knew that he was gonna make it home to me. There were definitely times when I did not feel that way. One of my most vivid memories during this entire time period was waking up in my aunt's house in the middle of the night, thinking I was at home and just being terrified, not knowing where I was not knowing where my parents were. And that was really scary. That was probably the scariest time in my life when we're going through all that hospital time and all the surgery when he was going through a second surgery. I know I was with you guys in the hospital more because I have the memories of walking down the hall lost, but on the bright fluorescent life eating in the cafeteria and things like that. But, uh, yeah, this demon must've memory.

spk_1:   19:36
Hamlet have been really scary to wake up. I know that Aunt Susan tried to make things as comfortable as she could for you. And she had a pallet where both you and Rachel slept together on the you wouldn't have to be all by yourself. Can we

spk_4:   19:50
not only those things that help just having that feeling. Someone was near use someone to help.

spk_1:   19:55
I am so indebted to them for how beautifully they did take care of you. Now let's go and fast forward to when you were 20 and Alex just had his most recent surgery. Can you show me what? It was like you as a grown adult? Obviously, times were very different. You are out of that already. But what was it like for you in that circumstance? Being the sibling of child wasn't much of a child. He was 17. But having Alex have surgery at that

spk_4:   20:25
age, that was very interesting experience. It really brought me all the way back when it first happened. It brought up some of these memories that I'm talking about right now. I remember when it started getting closer, I started to really get in touch with dealing that I had when he was going through his first surgery. But there were a lot of differences that made it nothing like that first surgery. For one thing, Alex was almost a fully grown man and he was incredibly courageous throughout the entire thing. I got to see him several times before he went in for surgery. And every time there was no negativity in him whatsoever. He had a very positive outlook for the surgery of positive outlook for his recovery afterwards. And everything was just very courage. It's going into it and honestly, him acting that way, like, took away a huge part of my fear for anything that was gonna happen because he was fully prepared to deal with what was gonna happen. So I knew all I had to do with support him and be there for him, and he was gonna be okay once everything started happening. It got scary again once the surgery was underway. Definitely was a little bit nervous, keeping in touch with you and Dad via text messages and phone calls throughout the surgery. But everything went perfectly. It was awesome. And Alex made an incredibly rapid recovery, unlike how it was 28 years before when he was going through it, he just he nailed it, ready to go,

spk_1:   21:48
having a really positive big brother like you, Showy. I really appreciate how you could tap into Alex's bridge and how, by having can be courageous, that helped you to feel courageous and positive too. I think that helped me knowing that the same surgeon was operating on Alex. He had the same anesthesiologist. It almost felt like we were going home again. And I did all of this. People loved Alex unwanted him to be okay. Exactly.

spk_4:   22:18
And also, when you bring that all that was a contributing factor to me not being worried as well, knowing that for the past, I guess with 17 years between the surgery, you had been in the community. You knew these doctors union progressions and in the medicine that they were using. So there wasn't a lot of unknown. It felt like we were going into something that we were ready for.

spk_0:   22:37
So what did your

spk_1:   22:38
dad and I do write while Alex was in the hospital that she found helpful as a big brother?

spk_4:   22:44
One thing that Laura talked about was communication. Yo were very good at communicating with me when I was very young. You tell me what was happening. He told me Alex with six. He told me that he was gonna be in the hospital for a while. But you didn't make it scary. It wasn't, you know I was a young child. I was three years old, so it could have been really scary. But you gave me enough information to know what was going on. No, they had to take care of myself. What? We all were taken care of, my little brother. And that made it real for me. You may be able to deal with everything, and it's been that way ever out. You guys have always told me what his situation is with being able to exercise. You know what his heart defect for? Holding back for home. And I always try toe. I tried to tried to push Alex beyond his limits. Always tried to help him grow. And, uh But you all kept me grounded and helped make me fully understand what was going on with him.

spk_1:   23:35
Yes, I frequently referred to you as a normal Isar. Joey, You would pamper Alex. You kept a really You know, you kept us treating him just like we were treating you, just like we would have treated any normal child. So

spk_0:   23:50
do you have any

spk_1:   23:51
advice that you can offer parents who are raising two or more Children where one of them has a serious heart defect so they can lead a good quality life as well.

spk_4:   23:59
Any advice that I give them would be talk with your kids, make sure they know what their younger siblings they're going through. Make them understand what they can do to help the younger sibling. Especially if they're older than the kid with a heart defect. They're gonna wanna help. They're gonna want to do what they can tow. I helped make their younger brother younger sister enjoy life as much as they can. You know, they don't want it to him as a kid. They don't want to see it. As, uh, someone is going to be held back. They want to see it as their little brother, their new friends. That's who they want. So as a parent, to do everything you can to help your child get healthy, healthier, healthy, older sibling know what to do. Thio kid with a hard to get back on track.

spk_1:   24:41
You were so good, Joey and I don't know if you ever remember this, but when you were little and I was doing physical therapy with Alex and I was doing vocal exercises with him, you were singing and playing right alongside May. And you were the great example for Alex. You were everything Alex wanted to be.

spk_4:   25:00
Well, yeah, definitely. I mean, I just I wanted my little brother to be everything he could be, especially as he's grown up and become such an awesome person. It reinforces that everything I did was for the best. I wanted him to really move past this early early illness that he had, you know, once he did it, there was no reason for him to be held back by anyone telling him he couldn't do things. It was our job to make him become functioning person in society, just like anyone else.

spk_1:   25:27
So what have you learned growing up with the broader with a chronic illness that might help other siblings showy?

spk_4:   25:33
What I've learned is you have to be patient with them. You definitely have to be patient. And because they are, I don't want a disadvantage because they are sick, that they do have some things that are holding them back. So as their older siblings, it's your job to be their protector, their teacher, their helper. But above all those other things, you're their friends. or their older brother. You're the older sister. You're their friends. You have to be that first. All those other things come second. Even though they're equally is important. You just have to learn how to be all those things at once And just be a good person for your younger sibling, you know, make the world a better place for them.

spk_1:   26:10
Well, you certainly did that for Alex. And thank you for being on this show today, Julie. I really appreciate it. It was especially touching for me to hear how Alex inspired you and help you realize that everything would be okay. Now we need to break for a commercial. But when

spk_0:   26:25
we get back, you'll get to

spk_1:   26:26
meet the director of a very special international organization designed to help siblings of Children with chronic health issues.

spk_0:   26:33
States him

spk_1:   26:34
to hear how Don Myers of the sibling support project is changing the lives of families

spk_2:   26:39
around the globe with a special way. Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource is that information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the C H D community. Visit Heart to Heart with anna dot com. Today. Anna Dworsky has written several books to empower the Congenital Heart Defect or C H D community. These books can be found at amazon dot com or at her Web site, www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by Women for Women in the CHD community. Ana's other books, My Brother Needs an Operation, The Heart of a Father and Hypo Plastic Left Heart Syndrome. A Handbook for parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more. You are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Ana at heart to heart with anna dot com Now back to heart to heart with Anna Welcome back Heart to Heart with Hannah, A show for

spk_1:   28:33
the congenital heart defect community. Today we're talking with Laura Ryan, Joey Jor, Scandal Meyer and our topic is Siblings into congenital heart defect community. Lower Ryan and Joey Dworsky are siblings of brothers, one with congenital heart defects, and Don. Where is the director of this sibling support project?

spk_0:   28:50
We've heard the

spk_1:   28:51
experiences of two siblings of brothers born with serious congenital heart defects, Laura Ryan and Joey Gorski. Don Meyer is director at this sibling support project. Don is probably creating chip shops, lively programs just for young brothers and sisters of kids with special needs kids and yet no costless serves for young and adult brothers and sisters, which allows hundreds of siblings from around the world to connect with their peers. Don was a founder of the supporting Extended Family Members Program at the University of Washington, which pioneered service is for father's siblings and grand parents of Children with special needs. Donna's senior author or editor, six books, chip shops, workshops for brothers and Sisters of Children with Special needs. Uncommon Father's reflections on raising a child with special needs. Living with a brother or sister with special needs. A book for said Views from our shoes growing up with a brother or sister with special needs. The Sibling Slam book and Thicker Than Water. Essays by adult siblings of people with disabilities Don Welcome to heart to heart with Anna. Thank you for happening Don. I feel like I've known you forever. You began your soup shops program a long time ago, and I discovered you on the Internet when I was trying to find material for Joey. Can you tell me what the catalyst waas for your soup shops, workshops and when you started them,

spk_5:   30:22
your listeners information are attempts to provide young brothers and sisters with peer support and information, but do it from a kid's eye view. I work with Tibbs is really an outgrowth of work I initially did with Dad's of kids with disabilities, but we quickly saw that there were other traditionally underserved family members and one of the things that we've learned over the years experience his parallel parents experience is just about anything you could say about being the parent of a child with special health care needs. You can pretty much say the same things about brothers and sisters and, like parents, benefit from opportunities to share the bears the hopes in their doubts with other people who get it. And so that's what we're trying to do with it chops to provide us with those opportunities. But to do it in a kid friendly atmosphere that's rewarding on many levels for them to come, too.

spk_0:   31:14
So what do you think

spk_1:   31:15
is the biggest mistakes that parents make regarding healthy siblings when dealing with the chronically ill child specifically regarding its sibling with special health care needs?

spk_5:   31:25
Well, first of all, I think it's important. Remember that parents do many things right and that hindsight is truly 2020. I moderate a lot of sibling panels in my work, and I asked them what one thing parents did especially well. And what's one thing you wish they had done? Maybe a little bit differently. And what I hear from Panelist who seemed to come from families that have done well, they say, you know, and our family, Mike was just another kid Yeah, yeah, yeah. You have some problems, But you know what? It's still your night to do the dishes you still need to take. She don't need to sweep the kitchen for you're just another bozo on the bus when I asked, Analyst, Is there something you wish your parents have done a little bit differently? What I hear from Panelists often is that I wish they had leaned on my sister to do the kind of things that I knew she could do growing up. And had they done that, I think that should be a lot farther along on that path to independence. Then she is right now. But other things. What I hear recommending parents do our wish their parents did is, as they wish, that they had carved time out of their crazy busy schedule. To spend one on one which typically developing kids and also as your son mentioned in the previous segment, is to have the best possible communication that they could have with your typically developing kids. I always encourage parents to pick up the book, how to talk so kids will listen. Listen, kids will talk as an example, and then finally I think, the most important thing for parents to remember that the single strongest factor influencing a sibling interpretation of their brothers, sisters health condition will be the parents interpretation. Health condition. So the parents perceive it is being this life fearing tragedy from which there's no escape. Well, they shouldn't be too surprised if their kids perceive it that way. On the other hand, if they perceive it as being a series of challenges that they have little choice but to meet with as much grace and humor they can muster, they have every reason to believe that they're typically developing. Kids will view it that way as well.

spk_1:   33:25
That's a great point. I'm really impressed that the Children are able to communicate all of that information to you.

spk_5:   33:33
Well, it's not always kids. Sometimes they get this from adults,

spk_1:   33:38
right? I love the fact that you worked with Father's grand parents. Children. You really see that having a child with a chronic illness affects the entire family?

spk_5:   33:49
Yes. Yeah, it does. It does. Yeah.

spk_0:   33:52
So what do you feel?

spk_1:   33:53
The role should be for the healthy Children and families like ours.

spk_5:   33:58
Well, they're different roles, and they're the rolls time. They're the world. They should be playing in the road that they sometimes get a sign. Sometimes the roles that get assigned is that of a junior parent, especially in single parent households. And kids become perent ified, as the saying goes, and, uh, and sometimes they put them themselves into a different role in that role is being the perfect kid, the ones

spk_1:   34:26
who won't

spk_5:   34:26
make any waves, the ones who will balance the scale, the one who won't bring home any more heartache. Sometimes kids think that that their job is to balance the scale. But here's the rule they should play. Their role should be to simply be brothers and sisters. Not They're not surrogate parents, not perfect kids. They need to do what others do with their brothers and sisters. They need to play. They need to argue they need to die, tease. They need the love they need to fight. Not only is it fair to the typically developing city, but it's better for the kid who has the health impairment. You can easily make an argument that a child with a heart condition who grew up with a brother, sister with whom he thought is better prepared for that cold, cruel world than a kid with a heart condition that grew up as an on Lee child. We learned about the given take of life may be in a brutal manner, sometimes even take up life.

spk_1:   35:24
Uh oh, I totally agree with you. That's what I loved about having Joey is our normal Isar. He did keep things normal for Alex. He did help Alex when they took karate together to make sure that Alex Bar, just like the other kids did. Alex was treated just like the other kids were. Let's go back to your sip shops for a moment. And

spk_0:   35:46
can you tell us

spk_1:   35:47
what the role your sip shops would play in the life of a child dealing with a chronically ill sibling

spk_5:   35:53
shops and multiple messages? The first message is that you're not alone. Most parents of kids with special needs would find it unthinkable to raise a child without knowing at least one other parent who gets it, who understands what their life is like, and that's what we're trying to do with it, Chuck. But let them know that their other kids that have the same unique joys and concerns that they have and chops give him a chance to express the unique joy's concerns and also learn how other cities handles sticky situations that sometimes find themselves in Shops. Also send the message that these kids are important to this chopping them. It's not for their brothers and sisters. Chopped our celebration of the many contributions made by brothers and sisters. And we think it's rock, and we want to know that we think they're important, too.

spk_1:   36:43
I love that I absolutely loved that. I was so excited, Don, when I was doing research for this show and I saw how many SIB shops are available now all

spk_0:   36:53
over the world worldwide. Yeah, Did you tell our listeners how

spk_1:   36:59
they would find a shop close to them?

spk_5:   37:01
Yes, if you go to our website, which is www dot sibling support dot or GE and start clicking around, you'll find a tab that says, Find a shop near you and there's a state by state province by province listing of all 436 shops worldwide. Actually there sip shops in Ireland and Japan and New Zealand and Argentina and ice, and there are many places, and they're all listed on our website,

spk_1:   37:30
and it's really easy to use. I went there myself and saw that there were shops in Austin. I wish that had been true 17 19 years

spk_0:   37:37
ago, I guess,

spk_1:   37:38
and Joey was little. But I'm so excited to see how your project has just taken off. And I understand that you're affiliated with the King during center and never a developmental and early intervention center. That, too, in Bellevue, Washington. Can you tell me more about that?

spk_5:   37:54
Yeah, The Kindred Center is the Washington State largest early intervention program, and they do marvelous things. But the director has been very visionary and realizing that it's important to address the needs of all family members and so the sibling support project. It's been a part of that, but also the Washington State Father's Network, which is served as a model for other father's effort around the country. So I could take an hour telling you about all

spk_0:   38:20
the wonderful

spk_5:   38:21
can drink center does, but that's amongst them. But my job is pretty much specifically with brothers and sisters.

spk_1:   38:28
That is just wonderful. I really appreciate you giving our there's your experience and expertise today, but I can't let you go until you tell us how we can find your books.

spk_5:   38:38
Oh, that's pretty easy. If you just visit our website, you'll see a link there to an online bookstore in a listing of all of our books. Summer forces Some are about and one Is the shop curriculum

spk_1:   38:50
terrific? Thank you again so much. Don. You were such an inspiration to me so many years ago when I saw you were paying so much attention to the siblings and you were giving a voice to the Children who are often overlooked.

spk_5:   39:03
Well, it was my pleasure. And if any of your listeners are interested in starting a chip shop in their community, please drop me. A line by email address is easily found on our website.

spk_0:   39:14
Terrific. Thank you,

spk_1:   39:15
Don. It's great to know there is so much more available to help siblings. Advantage of Children with chronic illnesses. It's time for our last commercial break. Stay tuned for a miracle moment

spk_2:   39:25
way. Anna Dworsky has written several books to empower the congenital Heart Defect or C H D community. These books could be found at amazon dot com or at our website www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by Women for Women in the CHD community. Ana's other books, My Brother Needs an Operation, The Heart of a Father and Hypo Plastic Left Heart Syndrome. A Handbook for Parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more. Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker. For your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource is that information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the CHP community. Visit heart to heart with anna dot com. Today you are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com. Now back to heart to Heart with Anna opened our show Heart

spk_1:   41:13
to Heart with Anna, a show for the congenital heart defect community. Today we're talking with members of the congenital heart defect community, dealing with the topic of siblings in the congenital heart defect community and my guest today, where Joey, Georgie, Laura Ryan but your siblings, brothers who were born without a heart defects and all. Myers, who is the director of this sibling support project. I want to thank my guests Laura Ryan, Joey Dorsey and Ah Meier today for coming on our show and for sharing their experiences in their expertise. I believe that they can help others in the congenital heart defect community when dealing with having a healthy child along with a child experiencing congenital heart problems. There are so many times that our Children have to have surgeries or they have frequent doctor's visits, or maybe they need special equipment. Sometimes I have to go to therapy is on a regular basis, but I'm hoping that today we've learned ways that we can work to help every member of our families, too, cope with the problems that they're going to face and hopefully even to thrive now for the final part of our show, Our miracle moment. Today's miracle moment is from the book My Brother Needs an Operation by Made Nana Gorski, and our miracle moment comes from the afterward of the book I wrote. This story was inspired by my son Joey. Alex's first open heart surgery was very stressful for Joey. Knowing that we had two more scheduled surgeries for Alex, I wondered what I could do to help Joey through them. I talked with parents in my support group, Congenital Heart, and I read everything I could get my hands on. Unfortunately, there was very little to read in the way of material for the unholy spittle ized child. I decided to take what I had learned from our situation, help other parents in the same situation. It was not until I began working on my book that I realized how many transitions I had expected of jelly. He was sent to stay with. Various family members had to attend a day care for the first time and was physically separated from Alex and maybe because we were in the hospital 3.5 hours from home. Although the first possible station was an emergency situation, my husband and I had six months to prepare for Alex's next surgery. It was then we decided to handle that situation totally differently because I am a stay at home mother. We realized that the most part for the hospitalization, both for Joey and for me was a separation. We decided to handle the second hospitalization as a family. For the second hospitalization, Frank and I took turns carrying for both of the boys so that neither one would be without one of us. For very long, we were fortunate to be able to stay at my parents home, and that was our home base. My mother also helped in caring for Joey. That was helpful during our change of shifts, and it became part of our routine. Perhaps the best part of our day was when the four of us were together as a family. After Alex's ex debated had his breathing tube removed, Frank brought Joey to the hospital every day. At the same time, we visited as a family in Alex's room. Then Frank, Joey and I would have dinner in the hospital cafeteria and returned to Alex's room to say Good night, sing a lullaby and say our prayers. The ritual was very important for the health and well being of our family. Hospitalization can be difficult on the hospitalized child, regardless of that child's aid. Sometimes families must be separated, as we were for the first surgery. I hope that the book I put together my brother made an operation will help the families who purchased it or who borrow it from the library's toe, learn how to cope. And I encouraged them to consider other healthy ways of enduring your Children hospitalizations as a family unit so that everyone feels important and this part of the healing process. Our guest today were wonderful at explaining to us what it felt like. Laura and Joey told us what it felt like, how important communication is and how they can take part in the healing process with the families. Don Meyer told us about chip shops. I really wish the chip shop had been in Texas when Joey was very small. It would have helped him to know that there were other Children that understood what he was going through, But I think, but Laura and Joey was very lucky that they had so much family support. It's not uncommon today with the very mobile societies that we live in for there not to be family around to help out. And that's where Don Meyers sibling support program comes in so very handily, because then there are people who may not be related to you, but they're people who know what you're doing, what you're going through. And they can help our siblings, the healthy siblings so that they can stay healthy and not be too stressed out. But what's happening when we're having Children in the hospital undergoing open heart surgery for having endless doctor visits, therapy visits and having tons of equipment in the house? And when it again thank Laura and Joey and Dawn for coming on our show and for sharing their experiences with us on the Web site, you will be able to see links to Dawn's website, so that should make it easier for everyone. I hope you'll check out the shop, and I hope you'll check out his books I think that would be very helpful for any family who has a child in the hospital and when left behind.

spk_0:   46:51
Thank you for listening today. Please come back next week on Tuesday at noon Eastern time for a brand new episode during the month of February, also known as Hartman Heart to Heart with Anna will broadcast a show every day on Tuesdays will have a brand new show featuring our theme perceived in seven congenital heart defects around the globe. The other days will be encore presentations with a brand new interest. If you'd like to know what shows will be featured, you can check out our website at www dot heart to heart with anna dot com. Please find and like us on Facebook, check out our cafe. Press batik revenue from the cafe Press Fatigue helps to defray the cost of this radio show. Follow our radio show on blunt talk radio and especially on streaker. Once we get to 100 followers on speaker, we can petition by heart radio to carry our show, and then people can listen to heart to heart with Anna in their cars. Thanks again for listening. We know that congenital heart defects. Touch people all over the globe. Remember, my friends, you are not alone. Thank

spk_2:   48:04
you again for joining us this week. We hope you've been inspired and empowered to become an advocate for the congenital heart defect community. Heart to heart With Anna with your host Anna Gorsky can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week.