Making Memories Everyday with our CHD Families (Remastered)

When a parent has a normally healthy child, it's easy to take a day for granted. Conversely, when a parent gives birth to a special needs child, every day takes on new importance. When a parent has a child with a life-threatening illness, each day can seem like a miracle. How do parents of children with congenital heart defects make each day special? How do parents of CHD survivors make memories everyday? What rituals are significant to a special needs family? When we know that any day could be our last with our CHD survivors, it is even more critical to make each and every day special and to create special memories to sustain us through hospitalizations, medical procedures or, the worst fate a parent can imagine, losing a child too soon.

Transcript

spk_1:   0:04
Welcome to Heart to Heart with Anna featuring your host Gorski. Our program is designed to empower the CH D or congenital heart defects 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 George.

spk_3:   0:33
Welcome to the 13th episode of the second season of Heart to Heart with Anna, a show for the congenital heart defect community. Our purpose is to empower members of our community with resource is support and advocacy information. According to the Centers for Disease Control and Prevention, chronic diseases or non communicable illnesses or prolonged duration do not result spontaneously and are rarely cured completely. Clearly, our Children, born with critical congenital heart defects, suffer from chronic diseases. Most of her Children with critical congenital heart defects, palliative surgeries. This means that they have surgeries that optimize the child's anatomy. But the surgery's do not cure the child heart defect. The child part does not function like a child's heart without that heart defect. The University of Michigan Health Systems states that about 15 to 18% of Children in the United States live with a chronic health condition. Many more of our Children, born with major heart defects are living to adulthood. For the first time in history, there are now more adults alive than Children being born with congenital heart defects. Were PhDs coping with a chronic illness can be discouraging and scary. It is incredibly important to stay hopeful. Don't ignore your worries or your negative feelings. They need to be recognized in a dress, but it's not helpful to dwell on them. If you find the positive side of things and keep your eye on the potential positive outcome, you will be teaching your child a valuable lesson and maintain your ability to cope as well. And this is according to the University of Michigan Health Systems, we parents of Children with critical congenital heart defects are living with chronic illnesses, which by definition means that we're spending more time in the hospital with our Children at doctor's appointments and dealing with issues on a daily basis that remind us that our Children have a new normal life. We have the opportunity of the care givers for these Children to make the best of the situation and One way we can do that is by making every day special. That is why our topic today making memories every day for our CH the families is so important to discuss this topic. Our guests today are hot Mom Kathy Baker, part Mom Dawn So remanded Heart Mama Leo Donald. Kathy Baker is a wife and a full time mother to do amazing boys Aidan and Jacob. Jacob was prenatally diagnosed with H L. A chest were high Papa Isaac left heart syndrome and an intact atrial septum. The Baker family traveled from West Virginia to Philadelphia for Jacob's birth and surgeries. He required immediate intervention and has bad told airway issues. Along with his heart condition, Jacob has had three open heart surgeries and a complete airway reconstruction, along with countless other procedures. He has struggled with speech delays but is making great progress. Despite all of his challenges. Jacob is now a rambunctious four year old who loves trains and playing with his older brother, Aiden. As a family, they loved making memories by celebrating even the smallest of holidays, the baker's love doing crafts and snapping tons of pictures of everyday adventures. Jacob has a block dedicated to his journey at www dot Jacob special heart stopped log spots dot com and that will be in the bio section of the heart to heart with Anna. Website will meet Don Silverman, Maria Donald later in our show. Welcome to hurt Hurt with Kathy.

spk_5:   3:48
Thank you. And I'm glad to be here. Thanks for having me.

spk_3:   3:50
I'm excited to talk about how we can make every day special. I love reading your blawg and I love how Jacob looks so happy and so many of the post on your blog's. Even

spk_0:   4:02
in the

spk_3:   4:02
hospital, it looked like you tried to make special memories for Jacob. I noticed that he had trains in bed with him and that Alexander absolutely loved trains when he was little, too. So that looks like something that my Alex would have loved as well. Can you tell us about something special you did in the hospital To make a seamless scary and a lot more fun? Take

spk_5:   4:20
goes nowhere without his train. So I actually had found a little portable train sets almost like a little carrying case. And it pulled down that stores the trains inside, and then his perfect size for on his bed. So we got that specifically for the hospital stays, and it gets a lot of use. You know, it's very hard to keep kids out of that kind of hospital depression funk when they're in there, and it's always a struggle to try to find things to entertain them, especially when they're stuck in bed for so long. So we've always tried to put together a little treasure chests or boxes full of surprises for J not spending a fortune, we just get little puzzles or books or new coloring books and maybe a new train little boys so that he has something to look forward. Thio, especially when you know they're having so many different procedures done. Little bravery rewards for him, and I usually try to throw a couple things in there for his older brother because he has the sacrifice, his numbers and times in the hospital, too. So we've always tried to make a big deal about him being the awesome big Brother and tried to include him in on the fun. We try to do things like chalk board so it would help with communication and, you know, things that are easy to play in bed, but that also entertain him, along with his favorite movies and different items like that, to try to make it a little bit easier for him when he's stuck in the hospital for weeks at a time.

spk_3:   5:42
And there can be such a struggle, and it's interesting because it's a a different kind of struggle, depending on what age they are when they're a baby, it's because you know that that's not normal. But they don't really know that it's not normal by the time their cause. They know it's not normal.

spk_5:   5:58
Yeah, his son Sam was a lot harder. It was a lot more of a struggle last year, his last open heart surgery because he was more aware and you could tell he was depressed for the first week. He wasn't allowed out of bed. He had a lot of access issues, so they had to keep his heart line and longer. And so it was a struggle to try to entertain him. And then even after that, he had test tubes were there a couple of weeks and he wanted to hop out of bed and go and play. And so it's hard to try to find ways to entertain them. The little treasure chest full of items really helped out because he was able to pick something you want to play with. And it's a little special surprise for him. Yeah, he loves toys at home, but something new, even those simple, is a coloring book. Something new just brighten up their day and makes it a little bit easier for them to make it a little less scary for them and have some things from home, like we always bring his blankie and his favorite movies and things like that to try to make it a little bit easier for him as well. And then, if we have short days and we're going Thio, the hospital for a clinic visit could be at the travel for everything. I try to plan things like once a year when he is no cardiac clinic. We try to stay a great will flood. So instead of seeing as dreaded going to the hospital, he remembers the adventures we had. No, we can't do that is often because of the cost of it, but we're going to do for a day a lot of hospitals will give you free tickets. They usually have a department or the social workers. You can ask. I know it. Since nice Children, you can get tickets to the zoo or the aquarium, so we try toe tack that on as well. So they remember the adventures and something fun, along with all the other stuff that they have to do.

spk_3:   7:26
That's great. I didn't know that the hospitals would give tickets. Todo I'm sure that depends on what hospital you're in.

spk_5:   7:33
Like I know Philadelphia, the Ronald McDonald House had some, but you don't always know that you, you know. So even if you're not staying at the Ramadan house, if you're staying at the hospital, you can call them and ask. And like I said, I know since I Children has them at the hospital, and I think it's like once a year you can get some for the whole family. But even if your hospital doesn't do it, it's worth a shot to call the Ramadan house the local one, and to see what they have because they get a lot of tickets donated sometimes, and so you may be surprised, and that's in an expensive way to try to do something fun while you're up there having to deal with the rest of the stuff. So it makes it fun for the kids.

spk_3:   8:08
Yeah, that's a great tip. I bet a lot of people don't even think to do that. So thanks for sharing that. Cathy. I noticed that when I was getting to know you to ask you to come on the show that you're very much like me. You just try to make everyday opportunities special as well. So what's your favorite ritual with your Children? We

spk_5:   8:27
try and it doesn't work out every week. But we try on Fridays, especially during the school year when their school to dio family movie night. And we got a blow up mattress specifically for that because the kids always want me to drag the mattress out and that will kill your back if you're trying to do every time we got a blow up mattress and the kids love helping to blow it up. They were gonna get all the pillows and the blanket and we make a big bed on the floor in the living room and they pick out a movie, and I mean you can go to Red Box and get a movie for a dollar and make some popcorn, and they really look forward to that. All I have to say is movie night, and they get all excited and want to help out, and it's fun. I mean, they spent half of it jumping from the count under the blow up mattress, you know, being rambunctious little boys. But this one time where we can just kind of slow down from the weekend to spend some time together. So I think that would probably be what I would think our favorite ritual with the kids would be. We do different rituals during the holidays that are also fun, like the elf on the shelf. Try to create magic for them whenever I can, and they love, love. Love that, because I'll have the elf tp the Christmas tree. Or like any, we do all kinds of crazy, crazy things. And on ST Patrick's Day, they have, ah, a leper con that will show up and create mischief and leave them little notes. And it's so fun seeing the magic in their eyes. Fun for me, too. But just being able to create that magic for them when they're young has been really great.

spk_3:   9:48
I agree. And there were certain holidays really lend themselves better to that. Like Peter, and being able to make the straight kind dying is doing all those fun things. And, of course, Christmas is a big one. Yeah, exactly a swell. But I really love what you said about trying to create the magic for them whenever you can. I think that's just so imported. They need that sense of all I know. Yeah, that stolen from them way too soon. And part of it is that our Children have to face things that most Children don't with. The frequent doctor's visits and hospitalizations with some of our kids have to see different therapists, and sometimes the magic is gone when you have all of that stuff that you're dealing with, so I love it that you are crack magic as often as you can. We all understand how to make memories when we go on vacation, but what are a couple of ways your family makes special memories without spending a lot of money? Because I know that for a lot of us were spending a lot of money on medical care, on therapies and other things, so we don't have much money to spend in a big way to make a special memories. How can we do this on a tight budget? Kathy

spk_5:   10:59
Exactly. And we are actually on a very tight budget. So we struggle with that because I want to give them everything. But of course, we don't have the money to be able to do big trips all the time. So even if it's not a holiday, I try to do a little fun. Things like Jake loves birthdays and randomly he'll just get on this birthday kick. So one day when he was doing that, I said, You know what? It's Mickey Mouse's birthday. So we got his Mickey Dawn. I had a cake in the Cabinet that we bake the cake and I found some old balloons put aside and he just lit up because he was just kind of talk about birthdays. And so we turned it into a big birthday party for Mickey Mouse and the kids and I sat around the table and sang Happy Birthday and had cake, and they had so much fun and It was just kind of a made up little adventure. He did, but they really, really enjoyed it. We try to do a lot of little craft, like on Fourth of July. I found some old white T shirts and I had pain. And so we took their hand print on the T shirt for the blue part of the flag and they painted stripe and they wore the shirts all day. And that was a keepsake for me, too, because it has. They're handprint on it. And I wrote their name in their age on it, and they were excited to go to Grandma's house and show our, you know, the shirt they made. And it was kind of a way for me to give them a lesson about Fourth of July and was about, and we made little disco Bob out of fruit and made a flag out of that. So even

spk_3:   12:14
things in you.

spk_5:   12:15
A lot of people do a barbecue, but I try toe look up little craft to do little inexpensive things with the kids, and they have fun, and I could teach it into a learning experience as well for them. But it's just fun for them. So I try to make a big deal when I can. With busy schedules, you can't always do everything, but once in a while, you know, it took me less than an hour to bake the cake with them and do the little party, and it meant the world for him. And so just doing things like that, I think, has been really fun for the kids and I in a way to turn an ordinary day into something special.

spk_3:   12:45
I love that, but also I know one thing my boys loved when they were your Children's ages finger painting. So we frequently had easels in the kitchen so they could just finger paint to the heart of delight. And, of course, more than the easels. I always got the washable kind. It was too much of a problem if the refrigerator also ended at heavy finger paint on their

spk_5:   13:08
great Exactly, and I took in Jake's room. I took like half the wall and painted as a chalkboard and got an old piece of wood down stairs and used old piece of molding. But I split the wall with knowledge by was the chalkboard paint and he uses that so much. He loved to just go and draw on the chalkboard and do his A B C's. And I think that was one of the best things I did because he has so much fun using that. And it was so simple. But then he could go in and write on the wall whenever he wants it, and I don't

spk_0:   13:36
have to worry

spk_5:   13:36
about it.

spk_3:   13:37
I want that photos on your blawg. So can you tell me what kind of documenting you do regarding the special memories that you make with your boys?

spk_5:   13:47
I take so many pictures, I probably drive on Facebook. It could be not even a special day just over end of day and I'll take, you know, 100 pictures because you take 100 you get 10 good, hon, But I love you know, I'm not professional photographer, but kind of a hobby for me. And so I love taking pictures of the boys. They're to the point where they'll say cheese without even looking up. I used to be with the camera. I really love love, taking pictures and especially since Jake it means so much more to me because you know, as much as we try not to think about it or focus on it, we don't know how much time we have with them. And I think the memories that we do make are so precious and are so important. And I think taking those pictures they mean more to me than anything in the house was fired after the kids were out the pictures or the only thing that would really mean that much to me. And I think because they capture the everyday smiles and growing up, and they also document what he's been through. Not everyone you know wants to take pictures in the hospital, but to me it was important because I want to be able to show him one day everything you know. He fought through to be here and how brave he Waas and I started the Blawg originally to inform family and friends, so I didn't have to say the same thing over and over. But it's become almost therapeutic for me as well, because I can document the pictures and what he's gone through, and I think it's really important to me to have those memories captured, and I'd like to take the pictures and I upload them on different sites, you know, order prints. But I also when I can like to do a photo book here and there to kind of capture the fun times as well. Something

spk_3:   15:20
picture bigger, Especially now when my boys were little. My Children just celebrated birthdays this last week, so Alex turned 20 and Joey turned 23. It was a long time ago.

spk_6:   15:32
They were little like your boys

spk_3:   15:34
and that we didn't have the ability to make photo books like what you can do now so easily. But we could buy those inexpensive Little photo album, and I would also take a ton of photos and make them their own little portable photo albums. And when we went to the hospital or we went anywhere in the car because we lived out in the country, it was always a journey to go anywhere. They had their little photo albums. They could look, and I want you to take care and an Aunt Susan and their cousins, and it was something special for them, and it was kind of like a way for them to keep home with them all. The time, and I think the doctor's appointment a little bit scary.

spk_5:   16:09
I still love looking at pictures. You know, the old photographs my mom kept of us. So I know the kids. One day we'll enjoy looking at him, and I think I love that We live in a day and age where we can take photos like we do and doors so many of them. But I think there's nothing better than a printed photo in a photo album to just look there, too. Yeah,

spk_3:   16:26
there is something special about that. I wonder if our kids will be so accustomed to digital photo album. I know Cappie. What's the best advice you have for parents? Have a child with a heart defect regarding making memories? You've already shared so many. But tell me what your very best advice is, and it may be a philosophy.

spk_6:   16:49
It's just the time

spk_5:   16:50
goes by fast. I mean, I remember when Jake was first born in thinking the Fontane seems so far away and how are we gonna get there? And now he's four. He's past that, and I think taking pictures is important, and even if you're not sure, if you want to take him at the time. You don't want to get later on and be like Oh, I wish I would have. You don't have to share them with people. They could be your own private thing to keep But you may want to have that one day. So I think, as far, not missing the opportunity to take photos when you can, even if it's during the hard times, because I think that they also showed strength. I enjoy going back and looking at old pictures of Jake and husband thinking. Look how far he's come. You know how. Look how seeing the side by side, they're amazing. And I just think taking time for everyday moments to life happened so fast. We're so busy, and I think even if it's something silly, like celebrating Micky's birthday or you know your kids want to play a game and you have a 1,000,000 things on the list to do, the dishes can wait. You know, the laundry can wait. That's always gonna be there. But they grow up so fast in the blink of the eye, whether they're healthy or not. They grew up that so I think it's important to kind of slow down and try Thio. Enjoy those moments because, like you were just saying with your kids, they grow up so fast, And so I think we need to enjoy it while we can. And even if you feel silly doing that, some of the different things with them, it means the world to them. And that's what matters. And I think giving them as many happy amazing moments as you can will mean the world to them.

spk_3:   18:17
Well, I love all of that. That's all perfect. Thank you so much for coming on the show with me, Cathy, and for sharing with us. There was a time for a commercial break, but don't leave coming up. We have ah, heart Mom with a another child with a complex heart defect will discover how she makes memories everyday with person. When we return a heart to heart with Anna.

spk_2:   18:37
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 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

spk_0:   19:15
way forever Baby blues sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient. Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes. Amazon dot com. Spotify I love the fact that the proceeds from that TV are actually going to help those with Joe enjoy the music. Tonight forever, we'll

spk_3:   19:57
come back to our show Heart to Heart with Anna, a show for the congenital heart defect community. Today we're talking with heart Mom Kathy Baker, Don Silverman and Maria Donald. We just finished talking with cocky about her experience of having a child growing up with a congenital heart defect in how she makes every day special for her son, and now we'll turn our attention to Dawn Silverman Don is a licensed mental health counselor, freelance writer and full time mother of three Children. Cameron, 14 Leah, 11 and Caden, who is five years old. As a congenital heart defect advocate. Don is pursuing her PhD in psychology and is currently writing her dissertation on the presidency experiences of mothers whose babies have been diagnosed with single ventricle heart. Caden was prenatally diagnosed with hypoplastic left heart syndrome, or hohs. He has undergone three palliative open heart surgeries at Miami Children's Hospital and will be starting kindergarten this year. It is important to Dawn and her husband, Evans, not like Cadence, actually, just diagnosis. Define who he is or what he can do. Because of that, they try to find magic and everyday experiences. They make family time a priority by finding fun activities to do on a regular basis. They also create many special memories. By traveling, Caden has been too many exciting places, and they're planning a family trip to Europe. This small Don tries to preserve all of the family experiences through photos and videos. Welcome to heart to Heart with Anna Don. Hi, Thanks for having me. Well, it's a pleasure to have you back on the show. Many of our regular listeners will remember that you were on the show with baby sitting and day care, but they were talking about something totally different. I love how in your bio you talked about making magic every day, just like Cathy and I were talking about. So I think that's something common amongst the heart. Mom, what do you think? Gone. I

spk_4:   21:55
agree. So much of what Cathy said resonated within me and the stuff that we d'oh and even going back to your introduction with the power of positive thinking. I believe still firmly in that, and I see it every day. And I think that's part of the magic that we make in our Children's lives by just being positive around them. And having that vibe transferred to them just changes the whole atmosphere, it within the family and how the Children may perceive their diagnoses. I think it does just a difference across the board. So I love that you brought that up and how Cathy kind of reinforce that notion. We tried Thio not make his a chilly test the focus of each day and instead to split the day unfold on Dhe. See what it has in store for us. I think that's interesting how you kind of mentioned that as parents, that we need to try to normalize their experiences because of everything that they have to go through. And for me, I almost feel like the opposite has happened that cane in through his kind of zest for life. I think on some level he just realizes that he's gonna leave on life in assumes that he brings that out in us. It's through him that I'm motivated. Thio stop and smell. The roses sort of speak because that's what he does, and I have no choice but to follow. So whereas I might be wanting to run up into the store, he's the one that stopped and points out the bugs on the ground and this and that, and it reminds me yes, let's stop. We don't need to go into this store right now. It's left looking. What kind of bug is that? See if we can figure out the name of it and I follow his lead. So he's kind of thought that special lesson to us and to our

spk_3:   23:36
family, it's amazing what our Children can teach us, and it's also amazing what are Children bring out of us. I love what you said about reinforcing that positive image and that positive atmosphere. My Children are now adults, and it's been very interesting to talk to Joseph. My heart healthy sent me how he remembers his childhood. I was really afraid that having a critically ill brother might make him feel anxious, nervous, worried about his brother and none of that. It's true, I think, because it's such a positive environment and we take time to look at the bugs and to figure out what their names were and what they were eating and what have you. Just like what you were saying with Kay there, we and Alex and I did that as well, but it was a little bit easier for us because Alex and Joey, only three years apart with your Children being so far spread out in a JJ is the process of making memories with them a little bit more challenging. How do you do it with your Children? And plus

spk_4:   24:37
not only different ages, different genders as well, complicated. Further, I

spk_3:   24:41
think someone the whole

spk_4:   24:42
been easy because there's a five year gap. Think Aidan and his sister. So in that sense, when he came into this world, she was already in school. So it was kind of like

spk_3:   24:52
having a first child again.

spk_4:   24:54
So it was easier to make daytime things special of him because I was home with him and hey didn't have to compete with his brother and sister since they were in school, going back to the stuff. The hospital. His brother and sister were so in Trickle, especially during his last surgery, when he was older, who's thinking 3 to 33 years old. When he had the Monte on, There were the ones that made the hospital they memorable for him, knowing my older son get out the iPad and start Googling pictures of trains are monorails and things of that nature. So the doctors would be doing rounds or Kate and removing a transfusion. And he wouldn't even be paying attention because my son knew how that his interest, by looking at Google Pictures that I would have never in a 1,000,000 years, thought that we would face time so he would get to talk to his brother is there from the hospital. At the time, my son had a huge Lego collection, so my son would just show the phone at the Lego trains going around his room for, like, 1/2 an hour, just showing Kate in the trains that were going on in the house and making Kate and feel like he was not missing out. He was part of what was going on men, as far as when we're all together, as you had mentioned before with my husband and I were trying to make it definitely a priority to find stuff to do with them and being we don't we're in South Florida. That can mean just getting out and driving along the coast of the beach, Thio finding different places here that you can go for free, that you like marine rescue and Sea Turtle rescue. So we try to find places like that. Lighthouse is even going to the airport. That one seems to my daughter is not thrilled with that one, but at least my other two boys just sit out and watch the planes just little things that don't necessarily cost a ton of money that we try to take a family day out where we try to take everyone's interest into consideration and somewhat may not totally enjoy what we're doing this week. But we'll know. Then the following week we'll try to find something more geared towards that child. But trying to find you just interesting activities that usually have to do with nature or ah, or transportation that remember, and those are the sorts of memories I remember growing up and the things that stick out, and I want them to have the same type of memories. And the other thing that you mentioned that we do, we do a lot of traveling on that. You know, I understand that not all all families have the resources to do. I'm very thankful that we d'oh because we do make it a point at least once a year to travel somewhere just stayed in for whatever reason. I think because he's got older brother and sister is so end all the differently in Mark. So lately we've been trying to find vacations that center around those. So we've been the Washington D. C. And he was so excited to see the White House that the cabdriver purposely went like out of his way to take us to the White House, to show him on the way to the hotel because he kept asking once we got there. The White House is the only house and a big one. This last year was Your key is for some reason, the biggest New York fan, and he's been talking about the Statue of Liberty. He said he had two wishes would be the Statue of Liberty and Spider Man. Spider Man lives in New York.

spk_5:   27:54
People don't realize that way were able to gradually have both those wishes green. It will

spk_4:   27:59
move back to New York. We happen to find Spider Man and time glare and oh

spk_3:   28:04
my God, she's not an actual liberty.

spk_4:   28:07
And he was so excited and he loves that sort of stuff and he talks about all of our chips. Isn't it something that appeals to all the Children because they all get something special out of that? And it's amazing when we go on these vacations that the pilots just I think there's something about these heart kids that people just have reactions to them because every time we get on the plane, a pilot will stop him and have him come into the cockpit and let him do pre flight checks and let him do all these cool, fun things that he does love. He talked about it, and the other kids talk about it, too, as long as he's capable. That's kind of our feeling again. Sort of what Cathy was saying, that you don't know how much time we have. We figured we're not saving for that rainy day right now that we have him here and we're just gonna go with it as long as he can. Travel is going to be healthy to do this stuff, for just trying to expose them all to everything that we can. So that's a big funding for our family.

spk_3:   29:03
You learn so much from traveling. It's just get amazing to me what you can learn from traveling. So I think that's a great idea. What is your advice for other parents who have Children with heart defects so they can make every day special is coming

spk_4:   29:19
down thio, knowing what your child capable of doing and working within that. So obviously it's different for each parent. We're fortunate enough that Kate and can get out and do things and experience things out there in the world. I do also try to do things again, like stopping to see the bugs and making the whole thing out of it. So if he notices a caterpillar like this happened just the other day on the tray outside, there's a whole bunch of caterpillars and he was wondering if they're poisonous. So we've made a whole science experiment out of it. We observe them and we observe what they look like in their color. And then we got to the computer and we typed in caterpillars that were green and fuzzy. And then we looked through all the pictures and we found the ones that match the ones that were on our tree. And then we looked at and we found out their names and we found out how they're poisonous. And then we looked see what type of butterflies they would turn into, and it turned into a whole activity that he called his grand parents to tell them.

spk_6:   30:16
Guess what

spk_3:   30:17
about? And then something

spk_4:   30:18
is simple a thing you know, A caterpillar in a tree turned out to be an entire learning experience for him, and I think it's those sorts of things to Dio, because that's the sort of things I think kids get older and they looked back other things that they're going to remember, that you spent the time to sit and find out what kind of bug this Woz or what kind of tree that is and that you took the time to do that. We could have just come back inside, and I could have put the television on for him, you know, And but instead, it was the whole learning process and not only fosters that love of knowledge with for the Children, which I also think it's important. But it does help to create those memories of sitting around and researching with Mom, and even his brother and sister got in on that helping who that kind of piqued their interest to

spk_0:   31:04
hide

spk_4:   31:05
a caterpillar. Before you know, we're you know, we're all little junior like experts here in the house

spk_3:   31:12
that that's just so also it's so much fun to learn together. And I was a homeschool mom. Both of my boys were home schooled with me, and that's how every day was with us It was always an adventure. We were always looking things up together in reading together, learning together. And I hope those are the memories that my boys hold dear, because I certainly d'oh! I loved learning with my Children. I think I had the best time out of everyone because I got to learn everything through their eyes, and it was very refreshing and so much fun. Plus, learning things through boys are totally different than learning things through a girl thought

spk_4:   31:47
yes, definitely not. The Caterpillar example. The perfect because of my daughter's reaction was just

spk_5:   31:52
you hear about this bug?

spk_3:   31:56
The gender definitely does play a role where she would probably be happy to go to the butterfly portion of the new literary different butterflies. But your sons would definitely too funny. Well, thank you so much for coming on dawn. I can't believe our time is up already. We do have to take a quick commercial break, but don't leave yet. We still have another heart mom who is going to come up and tell us not only how she found ways to make special memories for her daughter, but also how she's helping to make special memories for other Children to find out what organization she works with him, how you could get involved here when we return to heart to heart with

spk_2:   32:31
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 CHP community. Visit heart to heart with anna dot com today.

spk_0:   33:06
Texas Hot Into Street We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone who's worthy, my father promised me. A golden dressed twirling held my hand and asked me where I wanted to go. Whatever strive for conflict that we experienced in our long career together was always healed by humor. Heart to

spk_2:   33:27
heart with Michael, please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced the most difficult moments.

spk_3:   33:36
Welcome back to our show. Heart to Heart with Anna, a show for the congenital heart defect community. Today we're talking with heart Mom Kathy Baker, Gone Silverman and Maria Donald. We just finished talking with Cathy and Dawn about how they make memories for their sons, and now we'll turn our attention to Maria Donald Marto, Heart warrior Anna, Age 13. Anna's complex cardiac diagnosis came at 18 weeks. Just station just four and 1/2 months after Marie married her husband, Brian. Their honeymoon baby taught Marie more about life and love then she could have ever imagined since becoming a mother. Marie make certain she enjoyed every moment she has with her family. She confined Ah, positive, spent even the darkest days and find her family sense of humor always is the best medicine. In addition to being a busy mom, Marie finds joy and her kindergarten classroom and volunteering as a wish grant her for Make a Wish. New Hampshire. Her heart is full. Whether she's at home with her family at school with her, students are bringing joy to her wish. Kids so welcome to heart to heart with Ana Marie.

spk_6:   34:39
Hi there. I love

spk_3:   34:41
how all three of us have been talking about being positive and setting up probably retirement and hear that. What will you do

spk_6:   34:50
it any other

spk_3:   34:50
way? Well, you could, but it wouldn't be very happy. And I think that one of the things we hurt Mom's realizes we don't know how much time we have with our Children. So let's make the most of every moment. We can't take a moment for granted. Absolutely. It seems to me that one of Anna's best memories with her make a wish trip. So can you tell us about her Make a wish trip and where she went?

spk_6:   35:14
Oh was absolutely wonderful and magical. Anna was four when a family friend referred her for a wish. And so, like lots of four year olds, Um, and it was convinced she was a princess, and she

spk_3:   35:26
needed to know Disney

spk_6:   35:27
to meet the princess is so that's what her wish was, and it was just perfect for her. Make a wish was wonderful. They handled all of the details planning wise, which is actually sometimes tricky as a wish. Mom moms usually the ones planning trips and things like that for their kids. Giving up that responsibility was tricky for me, but I knew, you know, it was gonna be perfect for Anna, and we were lucky. We spent six days in Orlando and we visited six parks in six days. Of course, came home exhausted. Lomer. Our extended family met us down there. And so we just followed Anna's every whim. She would hold the map of the parks and she would point to where she wanted to go and we would all just follow. We had a dinner with Cinderella and Prince Charming in the fairy godmother that make a wish had arranged, and she was able to sit in the carriage dressed in her costume. And she was kind of like, See, I told you people think staff was just amazing. Everywhere we turned somebody was giving her a present and just kind of reinforcing that belief that she always had. But she was running the show. She was able to start the big parade at night time, but we were waiting one night for the parade to start. I pulled the cast member. That was kind of getting the crowd together over and said, You know, my daughter's a wish child She's been talking about being in this parade. Is there anything that she can do to participate? And the woman said, Well, I can let her start the parade So she gave Ana the making dust in her hand and counted and at the kind of three and through the dust and the parade started and I could have taken her to Disney as a regular kid, but I never could have pulled that off. You know, just the wonder in her eyes. And she was just so excited. I took 1500 pictures and raided a bloodhound has, like what the other moms were saying. You know, those those pictures means so much. And holding all of those memories really did get Anna through some pretty dark times. So if she had a surgery, she had her Fontane surgery right after we got back from Disney. In that book, like the other little guys, train was in his bed. That book was in him in bed with all of her pictures, and she just she doesn't remember. She's 13 now, so she doesn't actually remember. But she remembers the stories, and she has those pictures to help her. It was a wonderful

spk_3:   37:46
it's kind of it's part of her history. It's part of who she is, even if she doesn't totally remember it. It's hard to believe when they're so engaged that there's going to be a day that they don't remember

spk_6:   37:57
to. Actually, I know there are plenty of the dark times, but, you know, there were times when I could have rattled off like a cardiac encyclopedia. And now I kind of, thankfully that it's been so long that I kind of have to go back and refresh. Yeah, it's funny to think that way. You do forget some of the things that you never thought you would.

spk_3:   38:15
But in a way that's good. Out of the dark days are better left behind so that we can focus on the positive things like this. Make a wish experience, which was so amazing. And now you're a wish Grant Er, can you tell us how you go about becoming a wish Grant er and exactly what you do

spk_6:   38:33
for me, it was kind of a no brainer. I'm a kindergarten teacher. Kids are my life. And right from the beginning, when Anna's wish granted came to our house, I started asking and they suggested I wait until after Anna's wish was completed, which I did. So in 2006 I contacted the Make a Wish chapter in my state, and they have training that happened for me. It was a 3 to 4 hour conference with lots of other new Wish Grant er's, and we learned more about the background of the organization and, you know, things to do things not to do, you know, that kind of thing that ends it out. But for me, really, I couldn't wait to get in with the kids. In fact, Connie of people, when I tell them what I do for make a wish they talk me about, wasn't it so hard? These kids, they're sick and they're not well, and it must be so sad, and I find it really the opposite. No matter what's happening for me in my life with Anna or school or whatever, when I meet these families who I find more times than not have that positive attitude that we use in our families, you know it's just so inspiring. So what I do is compared with ah child and of another wish. Grant her and we go to visit the family at their house and visit with the child and bring them presents. So that will talk to us and we play and kind of trying to get to know the child a little bit and help the child to determine their heart felt wish. And sometimes it's easier than others. Some Children have been nonverbal, and we've had to work with the family. Some Children that I've met with have been 17 and have researched online exactly what they want, so it just really kind of depends. It's so important that the wish come from the child without a lot of influence from their family. But once we figure out what the child wants to do or to have or to go to meet a person, then I deliver that information to the Make a wish office and then they work on all the details. All I let the professionals working all the details. I'm just a volunteer that gets to jump in at the fun stuff. And then, after all the details of the wisher determined you know about the process. Sometimes wishes take five months to come into fruition. Hopefully, we don't have a rush put on because of the child's illness status, but their doctors have to sign off. The wish is appropriate and safe for the child to participate in, and so that sometimes takes some time. And in the meantime, I send postcards from Mickey, or I'll send the countdown calendar or little thing by a balloon to their mailbox with a special No, just to kind of keep them along the way, knowing that we're in it, we're on it and it's gonna happen. But the best part is one. We're ready to deliver the wish. I'm the one that gets to go. And if it's a trip, I deliver the itinerary and you know I'm just a hero and bring pizza and cupcakes and make a party of it. And it's just, you know, the whole purpose is just to bring joy to kids who have struggled medically, and there's just nothing bad about that. Really

spk_3:   41:24
so really great. Amazing. Well, tell me what advice you would give to parents, then who have Children with critical congenital heart defects who are wondering, should I look att A make a wish opportunity for my child. Yeah, I'm sure some people wonder how do you even go about getting started with them?

spk_6:   41:45
Right. Well, I would encourage people to go on, make a wish, not or website. There's a tab for referrals. And I hear sometimes people will say that they want to wait until their child can remember the wish. And I guess going along the theme of Make everyday important make Every day it happened, I think Don't wait because, you know, there are no promises we have delivered today. You know, like in my case with Anna, her wish at age four, it would be very different at age 13 but it doesn't take away from the amazing experience we had at the time when she was four. And the people that are working for make a Wish in the state chapters are just waiting to hear from parents and family friends about more kids that need wishes. And so they really you know, they're eager to bread it for everyone. Interesting thing that barred wish grant er when Hannah had her wish told us is that we were feeling a little uncomfortable. We could afford to bring our child to Disney, so I kind of felt like it might take away from somebody else's wish for somebody that was less fortunate enough. And I wish friends said, Well, you know, that's all fine and good. You can afford to bring your child Disney. But can you have the parade stop and have Cinderella come down and present her glass slippers to your daughter? And that was like, Oh, I guess I can't really pull that off. There are things that make a wish make happen that parents can't. So I would encourage people to start the process again. The doctor has to sign off that your child has a life threatening condition, and that was really humbling to me, actually, in some ways and the good news and the bad news. But you don't know if your child is eligible unless you ask, so I would encourage people to add.

spk_3:   43:23
That just sounds wonderful. That sounds like a wonderful advice. I do think that it does make you face something that's very difficult, though I know that we consider doing a make a wish for Alexander and My husband was very much against that. You know, he's going to be fine. We don't need to do that for Children who dies. But that's not true. It's not jail. Children who die. It is for Children who are critically ill. But it's like you said it's to give them that once in a lifetime experience, and that's something especially Dave, a mom who takes as many pictures as you. They look back on that, and when they're going through the hard times, that's kind of like a touch down for them. That's an opportunity for them to go back in time, to a much happier place and to a time where they felt really special and grab that sense of purpose and that sense of well being that they had at that moment, right? I think you're right. I think it's an awesome experience, and I encourage the parents who are listening to the show to reach out. And if their child can't go, maybe they can become a wish grant er and help Children.

spk_6:   44:27
It's not always a trip. There was that boy that was in the news just recently in San Francisco. The little five year old who wanted to be Batman and the whole city came out for him, and that was amazing. It was incredible how the community came together and we were that family, that strangers would stop us and give us presents for Anna. And it's just so empowering. It keeps you going. You know, when other people recognize that this is hard and keep going. So it will

spk_3:   44:54
you. Well, it's certainly help you with that positive attitude and setting up a positive environment, because look at all this that people are doing because people love you and people we don't even know you, which I think is very heartwarming. Thank you so much, Marie, for coming and sharing so many wonderful experiences with us. We do have to take one more quick commercial break. But don't leave because when you come back, I'll be in the studio together. Let's find out what parting advice our moms have for making every day special when we come back to heart to heart with Anna

spk_0:   45:31
Heart with Emma 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 and power and enrich the lives of our community members. If you would like access to free resource is pretending to CHD community please visit our website at www Congenital Heart Defect. Stop Tom for information about CHD, the hospitals that treat Children with CHP summer camps for CHD survivors and much, much more.

spk_3:   46:09
Welcome back to our show heart to heart with an A, a show for the congenital heart defect community. Today we're talking with Heart Mom Kathy Baker, Dawn Silverman and Mario Donald. I have so enjoyed talking with these heart moms about how they make special memories for their Children and how Marie is even making other special memories for other people's Children. It has been so much fun to talk to these ladies. It's so easy to be overwhelmed with raising a child with a heart defect, dealing with the medications and the doctor's appointments and hospitalizations that can suck a lot of the fun out of life that these women have informed us of ways that we can make even those times special. I love Kathy's advice with bringing a treasure chest and dawn, mentioning how we can take just the smallest moments and make them special with our Children. And I love everything that Marie shared about the Make a wish program. There will be information on a heart to heart with Anna website. If you look at bio, there will be linked to all of these different websites that we have mentioned in the show today. The first of all, let me thank each of you, Kathy and gone. And Marie, thank you so much for coming on the show today. Thank you for having us. Well, now we're all in the studio together. I want to give each one of you one more opportunity to share something special or to ask a question of one of the other guests of something popped into your head while they were speaking. And I'll start with you, Kathy. Since she went first,

spk_6:   47:34
we had just

spk_5:   47:34
talked about little inexpensive things you could do with your kid. If you're not very creative minded, I really, really encourage people to go on Pinterest. I briefly talked about that. I use that site a lot just because you can type in any type of craft your kids are what grade they're in or how old they are or different holidays. And there are hundreds of ideas on inexpensive things that you could do with your kids at home. So encourage parents they're looking for ideas on different ways of making memories are fun things to do on a rainy day. Utilize that site because there's a lot of fun things that they could do on There

spk_3:   48:08
are, and there's all kinds of craft on the knitter and a crow share. They have patterns on their. They have ideas for things that you can do and knitting and crocheting a cross stitch everything. You're right. It's easy to lose a lot of time on Pinterest.

spk_6:   48:24
I'm going to help me stalking your pages very soon. I

spk_5:   48:29
haven't our background, so I really enjoy doing different things with the kids. And I volunteered their schools to help teach art to their classes. But even with that, I still go on there to look at different ideas, and I'm constantly in all of some of the things they see on there and how easy it is and that you just wouldn't think of normally. And it's just such a great resource. If you're looking for fun things to dio your kids, it

spk_3:   48:49
really is. And they give really simple directions with a lot of photographs. But just remember, dear listeners, if yours doesn't come out exactly like the pictures of

spk_5:   48:58
everything I've made, it

spk_3:   48:59
comes out exactly the website. Okay, Many fails, if I know really, but fun. Yeah. Effort to try. All right now, let me go to Dawn. Dawn, Did you have a nice piece of advice or question you wanted to ask? I actually

spk_4:   49:14
do is advice that was given to me when I was first pregnant with my very first child. So it's not specific to our heart Children that I think it's something that most moms, when they hear about love, the idea and it goes with saving memories for Mom's as well as for the kids. I have over the years collected all of my Children's clothing that I've kept special clothing like first birthday for Children may be with, like, decayed and things he wore at the hospital, and I have kept everything that had a special meeting to it, and what I'm planning on doing once they get older isn't actually going to cut up each of their clothes into little squares and they quilt for them an individual ones for them, maybe as wedding presents, graduation present? I'm not sure yet. And then, with whatever's left over, I'm gonna quote together for me so that I have a quilt that contains pieces of clothing from all of their special events that they wore throughout their lives. And I think it's such a wonderful keepsake for moms and what amazing gift to give to your Children that they can look through it and they're gonna want to

spk_3:   50:15
know, What was this one from? And what? When did I wear this one? And I remember that shirt because

spk_4:   50:20
it was in that picture. I wore that to Disney World, and I think it's a great weight of, in addition toe photograph, preserving memories and reliving them and then having it as an heirloom piece that can then pass through the years. So that's wonderful, like that was given to me so long ago, and people think I'm crazy that I have kept all my Children's clothing,

spk_3:   50:40
but I haven't, and one day we put to give you anything at all of my Children's clothing. But I kept all of my boys special T shirts from my older son was a swimmer, so I have all of his swim shirt and I have all of Alex's robotic T shirts that have the name of their team, and some of them have the names of all the members. And that's my dream. On days to make a quote for him, I think it's

spk_4:   51:07
also a nothing. We haven't talked too much. But for all the ch the angels, better out there and the parents of importantly lost your Children, it's away. That perhaps keep memories of their Children if they kept kept their baby clothes a lot of times. They don't know what to do with their child stuff after their child unfortunately passes. And I think that's a special gift that you can make or offer to make for a friend if they've lost their child like they can do with the clothes so that they can still haven't near them in a way that's preserved in special. Also,

spk_3:   51:38
I love that. That's awesome. Gone. Okay, Marie, you get the last word, My dear.

spk_6:   51:42
L terrific. Really. I just wanna reiterate to encourage people to go to the Make a Wish Shot or GE website. End Explorer. What other kids have wished fuller and to think out of the box when helping their child think about a heartfelt wish. It's really It can be something as fun and expensive as a trip to Dubai. Or it could be like that little boy who became Batman and San Francisco. But we just don't know what magic can come. You can't really plan it all the way through, so you just have to take that first step

spk_3:   52:13
that that's awesome. Thank you, ladies. You all were amazing. And one other real quick note on her too hard with anna dot com website under the BIOS. When you look for this show, I'm going to pose the gentle heart defects dot com website that I run as well, because I have a whole section on a lot of different foundations that provide dreams or wishes for Children. It's not only make a wish, but there's also give kids the world and the dream factory and Children's hopes and dreams. There's actually quite a few different organizations that do this, and I just think it's amazing and that concludes this episode of Heart to Heart With Anna, Please find unlike a Facebook, check out our website heart to heart with anna dot com and our cafe Press batik. Follow us on block talk radio And remember, my friends, there is hope.

spk_1:   53:07
Thank you again for joining us this week way. Hope you have been inspired on Empowered to become an advocate for the congenital heart defect community. Heart to heart With Anna With your hose down, Dworsky can be heard every Tuesday at 12 noon Eastern time.