Sandra Wallis is the author of "Not What I Bargained For: My Journey Raising Four Incredible Kids, Including Two With Severe Medical Conditions." She joins Anna in this episode of "Heart to Heart with Anna" to talk about what it was like for her to raise two children with special needs and how she because an author. With one child born with spina bifida and another born with gastrointestinal pseudo-obstruction, Sandra certainly had her hands full! Tune in to hear how Sandra faced seemingly insurmountable medical complications, almost losing her precious son, and how she and her husband managed to raise all 4 children to adulthood.
To listen to the episode of "Heart to Heart with Anna" featuring Sandra's son Darryl, use this link: https://tinyurl.com/ych3a6hv
To purchase Sandra's book, contact her on Facebook or Instagram or purchase at Amazon here; https://tinyurl.com/yadk5kxs or Baby Hearts Press here: www.babyheartspress.com
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Sandra Wallis is the author of "Not What I Bargained For: My Journey Raising Four Incredible Kids, Including Two With Severe Medical Conditions." She joins Anna in this episode of "Heart to Heart with Anna" to talk about what it was like for her to raise two children with special needs and how she because an author. With one child born with spina bifida and another born with gastrointestinal pseudo-obstruction, Sandra certainly had her hands full! Tune in to hear how Sandra faced seemingly insurmountable medical complications, almost losing her precious son, and how she and her husband managed to raise all 4 children to adulthood.
To listen to the episode of "Heart to Heart with Anna" featuring Sandra's son Darryl, use this link: https://tinyurl.com/ych3a6hv
To purchase Sandra's book, contact her on Facebook or Instagram or purchase at Amazon here; https://tinyurl.com/yadk5kxs or Baby Hearts Press here: www.babyheartspress.com
Please visit our Social Media and Podcast pages:
Apple Podcasts (https://itunes.apple.com/us/podcast/heart-to-heart-with-anna/id1132261435?mt=2)
If you enjoy this program and would like to be a Patron, please check out our Patreon page (https://www.patreon.com/HeartToHeart)
We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!
Well, I think right off the bat, you realize that you're not in control, and you know, God's in control at that point.
Anna Jaworski :
Welcome to the 15th season of Heart to Heart with Anna. I am Anna Jaworski, and the host of your program. Today's show is "Becoming an Author While Raising Children with Special Needs," and our guest is Sandra Wallace. Sandra Wallace is a mom to four children Leighanne, Heather Crystal, and Darrell. Heather was born with spina bifida and hydrocephalus, or Darrell was born with a rare disease known as gastric intestinal pseudo-obstruction. Darrell was fed intravenously until the age of 20, when he received a quadruple organ transplant that changed his life. Sandra and her husband Wayne always wanted all their children to be independent, and they devoted their lives to accomplishing that goal. Heather now lives independently with support. Darryl, now aged 34, works as a pharmacist and is married with a three year old son who inherited his father's condition. Sandra and Wayne found navigating the medical world of hospitals, invasive procedures, and therapists to be mind boggling. And Sandra has written a book about her family's experiences, and how faith kept them together. Her book is called "Not What I Bargained For: My journey raising four incredible kids, including two with severe medical conditions." Welcome to Heart to Heart with Anna, Sandra.
Sandra Wallis :
Thanks for having me on the show. I'm just thrilled to be here.
Anna Jaworski :
Well, I'm thrilled to have you on the program. Of course, my loyal listeners will recognize your name because your son Darrell was actually on my program.
Sandra Wallis :
That's right.
Questions and Comments :
Well now I get to meet his mom, so this is exciting for me. Let's start by talking about Heather though because I don't really know much about Heather, but I did learn from the bio that she is a special needs young lady. So can you tell us what a typical day was for you when you were caring for Heather when she was a little girl?
Sandra Wallis :
Well, Heather was delayed developmentally and mentally, so she didn't really sit up until she was about a year old. At six months old, they made a special brace to keep her body from collapsing like a rag doll. And she didn't really crawl till she was about one, and it was never up on her knees. It was with her arms like commando crawling, and she was really heavy to carry around. She didn't walk till she was about two. So a typical day was; I would get her up out of bed, get her cathetered, of course she always wore diapers because she had no control of her bowel or her bladder. The bed was always wet. So I would change the sheets, and she would need cathetered every four hours and a lot of times her diapers were soiled. So I would get her dressed, take her downstairs, put her in the high-chair. She couldn't feed herself until she was at least two because her fine motor skills were affected. She couldn't pick things up. She couldn't use a knife and fork. She could use a spoon, but it didn't often get to her mouth.
Anna Jaworski :
Right
Sandra Wallis :
So I had lots of wash to do at least six loads a day between her and Darrell the other kids, but she had physio exercises and occupational therapy that I had to do with her at home, as well as take her over to the rotary center two or three times a week for an hour each time, stay with her during the physio, and she had swimming lessons there since she was two months old. So I would have to take her to the swimming class, and then there was all the doctor's visits. The clinic that we went to was in London, Ontario, Canada, so it was an hour and a half from our house.
Anna Jaworski :
Wow.
Sandra Wallis :
So at least once a month, I would have to go and visit the bowel and bladder nurse or the neurologist, the neurologist. They didn't have all the appointments set up on one day, they were just every doctor had its own day, I was continually teaching her things like I had to teach her how to crawl so we would spend time on the kitchen floor, I would put cheese and then I would let her crawl to it and then I would keep moving it so that she would crawl farther. And then, in order to have her stand, they made a special brace. We would strap her legs in and she would be able to stand up she couldn't move, but I would put her at a coffee table, put blocks and rings and things to keep her occupied, like toys. But she couldn't be left alone because she could fall backwards in the brace.
Anna Jaworski :
Sure.
Sandra Wallis :
So for two hours every day I would put her in the brace and she had leg braces that they made her with special orthopedic shoes, so they had to be put on then put her in the brace, and her pants always seem to be wearing out because the braces would rub.
Anna Jaworski :
Sure,
Sandra Wallis :
So I would sew her pants and put extra padding in the knees, and then elastic waistbands to get over all the braces.
Anna Jaworski :
Wow. Did she have some other syndrome or something because I've known of other children with spina bifida, but I didn't know that they would have the issues with the urinary tract and the bowel problems is that unusual?
Sandra Wallis :
Well, no, it's common, but it depends on where the opening is on their back. Spina bifida kids, the back is like a zipper and it closes from the neck down and the bum up. So wherever it's open on their back, below that point, all of the nerves and muscles are affected. So with Heather's, it was S1 and S2, and I think L5. So that affects all of the bowel and bladder.
Anna Jaworski :
Wow.
Sandra Wallis :
But most of the kids I know, they all have problems with their bowel and bladder.
Anna Jaworski :
That's really rough, and it sounds like you're spent a lot of time doing laundry. Now how many years separate your children?
Sandra Wallis :
Leanne was first, and then I wanted the kids space two and a half years, so Heather was next. And then when Heather came I was afraid and just overwhelmed with all the work. I waited, and then I didn't want Leanne to be totally in charge of Heather all her life. So I thought I'd have another child. So that's when Crystal was born, three years later, and then I had Darrell two years after Crystal.
Anna Jaworski :
Wow. Okay, so you still had your four children fairly close together.
Sandra Wallis :
Four under seven years. It was crazy, really.
Anna Jaworski :
Wow, wow. Okay, so tell us about when Darryl was young because he also had major problems.
Sandra Wallis :
Right, so I had amniocentesis for Darryl and Crystal to make sure they didn't have spinal bifida, which they didn't have anything really, but I had a lot of stomach pain when Darryl was in my tummy. Darrell was born three weeks early, but he was still eight and a half pounds, but by four months, his stools didn't form into any mushy balls or anything, and they smelled really bad, and they were liquid
Questions and Comments :
Now, so, oh my goodness. So were you scared noticing that this child also had bowel problems?
Sandra Wallis :
Right, yes, because spinal bifida can be occulta, which means their back looks fine, but they don't have any control over their bowel and bladder. So I had them test Darryl for that, and he was fine. He didn't have it. You can also do a blood test and the blood test was fine. But my pediatrician said that he had celiac disease, which means they can't digest wheat and just give him rice cereal. So I thought, okay, I can fix that. But he didn't improve, and I was breastfeeding him and he would projectile vomit.
Anna Jaworski :
Oh my goodness. Wow.
Sandra Wallis :
And so I thought, well, this is weird, like they're supposed to be easily digested and his tummy was distended and it wouldn't go down. So I took him back to the doctor and the doctor said, "well, let's send them to London. It's a bigger center." So the doctor there thought he had pancreatic insufficiency, that he was having problems digesting. The enzymes in his pancreas were there to help him. So he gave him special capsules, so I'd put them in applesauce, but they ate away his skin from his mouth and his bum and he still didn't gain any weight. So I took him back to London, and I got a special doctor called a adult gastro-endocrinologist. So he tested Darryl for the 20 most common childhood diseases and came up with nothing. That was 1987. Darrell was one and a half and he was only 18 pounds. That doctor said, "Okay, well, let's send them to Sick Kids in Toronto. Maybe they can figure it out." He said, "Maybe if we keep Darryl alive for 20 years, they might be able to do a bowel transplant." He said, "they're starting them here in London, but all of the adults have died."
Anna Jaworski :
Oh my goodness, that is not what a mother wants to hear.
Sandra Wallis :
So they sent him to Toronto, he was admitted, and then they did every test under the sun: bloodwork, x rays, CAT scans, biopsies, urologists, and then they finally sent us to Toronto Western hospital, and they did a special motility test and found that Darrell didn't have any peristalsis movement from his breastbone down so he had all his nerves and muscles, but nothing was moving through, the food would just get stuck and he was vomiting a lot, green bile and not growing So the doctors said the only way would be to put them on intravenous feeding. And so that's what they did. And eventually Darrell got a central venous line.
Questions and Comments :
So you were able to keep him alive for 18 months despite the fact that his body was not processing food properly.
Sandra Wallis :
Right,...
Anna Jaworski :
That's miraculous
Sandra Wallis :
...after a year, I mean, he didn't grow past 18 pounds. And I mean, it took six months before they could figure something out. And really, they just made up the name gastrointestinal pseudo obstruction. They didn't know how to fix him,. They just knew that he needed intravenous feeding to grow.
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Content Disclaimer :
This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the Hosts and Guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.
Questions and Comments :
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 Jaworski at Anna@HearttoHeartwithAnna.com. That's Anna@HearttoHeartwithAnna.com. Now back to Heart to Heart with Anna.
Sandra, before the break, we were talking about what a typical day was like are you with your children, kind of, I mean, we were talking a little bit about it. Heather and she is such a complicated case. And you said she wasn't developing normally and you had to do so much with her. I'm wondering how in the world you are able to also work with the other children considering, luckily, they're spaced fairly closely together. But wow, how were you able to care for four children when two were so complicated? Did you have nursing help from outside the home?
Sandra Wallis :
We didn't have nursing help in the beginning, at all, because nobody would pay for it. It was $35 an hour. Sometimes when Darryl was in the hospital, they would give me homecare, they would give me two hours, twice a week, but there were only certain things those people would do.
Anna Jaworski :
Wow. So you would have a child in the hospital you would have three children at home, one of those being your child with spina bifida who needed a lot of attention and they would only give you help twice a week.
Sandra Wallis :
Yes, I pleaded countless times with them. They gave us financial help for the braces and the extra clothes, extra wash loads, detergent, so to speak. But yeah, no nursing care. My husband's company had a few hours of nursing care a year, but that wouldn't touch what my kids needed.
Anna Jaworski :
So I'm guessing you were a stay at home full time mom.
Sandra Wallis :
Right. I worked in the beginning and thought I would be a career person. But when Heather came along, I knew that was impossible. And I knew that it was my job to take care of Heather and to get her to the point where she would be independent, the best possible scenario you know, nice kid, manners, clean, you know all the things that you want your kid to have.
Anna Jaworski :
We know that you did an amazing job because they're all still with you. How in the world did you negotiate those teenage years? What was that like for you?
Sandra Wallis :
Well, the teenage years were hard in a different way because the kids were in activities like soccer, baseball, they all had to be driven to places and there was only Wayne and I, and Darrell needed hooked up around three o'clock in the afternoon, so someone always had to be home with him. That meant Wayne was going to different fields and Leanne belong to brownies, and she played rugby.
Anna Jaworski :
Oh, wow.
Sandra Wallis :
They had piano lessons, all of them and...
Anna Jaworski :
All of them, aven Heather was able to play piano?
Sandra Wallis :
Yes, her fingers weren't working very well, so the Occupational Therapist said that if she started piano, it would be good for her brain and her fingers and the government would pay for her lesson. So I thought, 'Okay, once a week, I'll take her there and then practice with her at home.' She only lasted a year because it just got too difficult for her. But the financial burden of three kids in university was difficult. And then...
Anna Jaworski :
of course,
Sandra Wallis :
...when Darryl was sick in the hospital, Wayne had to learn how to take care of Heather, so he had to take her to her doctor's appointments, her physio, occupational. If she had to go to the hospital, I would take her and then he would have to learn how to take care of Darryl with all his drugs and when he was sick are mixing the vitamins, watching out for emergencies that would happen in the night. Like the pump would occlude or the lines would separate and then blood would be all over the floor. And,
Anna Jaworski :
wow. So your husband learned to have a whole new appreciation for what you did as a mother, didn't he?
Sandra Wallis :
Yes, and it was hard for him because he worked all day and then he had to come home and then help me.
Anna Jaworski :
Mmm hmm. Yeah. but he got a break. You never got a break. once your husband camee home and helped you
Sandra Wallis :
That's what I thought too, until I went to work after all the kids had gone off to university, and I realized that work wasn't always doughnuts and coffee.
Anna Jaworski :
Well, that's true, that's true. In your book, you took the reader from birth through your children's life stories. Tell us about sending Heather to school and the biggest challenge you had to face.
Sandra Wallis :
Well, in 1985, when she went to school, that was the first year they Integrating disabled kids in Ontario into the normal school that all the other kids were at. With the shunt in her brain, it was kind of worrisome, because if it occluded or got blocked by stool, she would start to bring up and her eyes would get dilated, and people have to know what those signs are because you have to get them to the hospital right away.
Anna Jaworski :
Right, right. Oh, my gosh
Sandra Wallis :
I was worried that kids would make fun of her because she had a walker, and because she was developmentally delayed and one of her eyes turned in, she looked different. She watched her friend, and kids make fun of other kids that are different.
Anna Jaworski :
It's true.
Sandra Wallis :
But, most of them were fine with her.
Anna Jaworski :
Well, it appears that one of the scariest things you had to deal with for Darryl was watching his health deteriorate. What was the biggest life lesson you learned in watching your precious son slowly decline?
Sandra Wallis :
Well, I think right off the bat, you realize that you're not in control, and, you know, God's in control at that point. I had to give Darryl to God quite a few times because I would take it back all the time and think I can do this. I can handle everything. And, you know, day by day, he was just getting more yellow, his skin, his eyes, his liver functions were off the chart. And I knew that he needed the transplant but he was so sick.
Anna Jaworski :
Yeah,
Sandra Wallis :
So I thought many times, he's going to die and that's going to be the end of it. So I just got more people to pray. The church family and everybody I knew. We didn't have Facebook or anything back then. But I did trust God to take care of him whether he was here with us or in heaven. I appreciated all the small milestones that the kids would cross, whereas before, you know, you think oh yeah, get them to this point, get them to dress themselves, brush their teeth, get them to school, but even the smaller things and just living day by day, that's what I learned the most. Appreciating everything. Slowing down.
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Anna Jaworski :
In the second segment, we were talking about some of the things that you learned as your children grew up. I found it interesting that you said the biggest life lesson you learned with Darryl was that you weren't in control. I kind of think you probably started to learn that with Heather as well.
Sandra Wallis :
Well, Heather really wasn't as bad. I knew lots of different kids with Spina Bifida, and they were either in a wheelchair or had arm crutches. I mean, I never feared that Heather would die. Possibly if her shunt blocked and you know, that would be the case. But once they closed up her back, she was pretty well, perfect. You know, I mean, I cathetered her and taught her how to get herself cathetered as she got older. But mostly it was just work like getting her cleaned up, whereas Darrell, you know, he had blood infections and line infections, where they would have to replace a central line and his liver wasn't working. He was bringing up daily blood. And then, I mean, it was touch-and-go a lot.
Anna Jaworski :
Gosh, it almost sounds like you could be a nurse for all that you had to learn taking care of your children.
Sandra Wallis :
Most people think I am a nurse
Anna Jaworski :
I bet they do! Oh my gosh. What do you think was the greatest accomplishment that Heather and Darryl gained as adults?
Sandra Wallis :
Well with Heather, she's independent, so she lives in her own apartment. She can take the bus, a special needs bus, to all her doctor's appointments, grocery shopping. The therapists that she goes to they all tell me "Don't worry about Heather, she can tell us what's wrong what she needs." So that was a relief.
Anna Jaworski :
That's huge considering where she came from and how much you struggled with her at the very beginning for her to be independent like that. That's, that really is huge.
Sandra Wallis :
And she keeps herself busy. I taught her how to sew when she was at the house. And she made a quilt and she can do rug-hooking and knitting.
Anna Jaworski :
Wow.
Sandra Wallis :
And she got her grade 12 not that she'll ever get a job. I mean, she's on disability, but she went on to college, and I think that gives her a lot of self esteem.
Anna Jaworski :
Sure, absolutely.
Sandra Wallis :
That's all I wanted, for her to be independent. So that when I die, I won't worry about her.
Anna Jaworski :
Absolutely, absolutely. Now Darryl is a whole different story. Tell us about what you feel his greatest accomplishment was as an adult.
Sandra Wallis :
For Darryl, definitely was finishing school. So he had his transplant after he completed his first year of pharmacy. He became a pharmacist. He did his four month placement after in a pharmacy and a hospital, and then he worked here in Sarnia, where we live, for about eight years at a well known pharmacy. He only takes one very small dose of an anti rejectionary drug and one pill to inhibit the acid in his stomach. So for him to go through a four organ transplant and finish school, eight months after his operation, to me, that's the biggest
Anna Jaworski :
Yes!
Sandra Wallis :
The other, the other part of that would be, he got married and had a little boy and I didn't think he would ever get married because he has his incision right down past his belly button. He has so many holes all over his body from all of the tubes
Anna Jaworski :
Yeah, yeah.
Sandra Wallis :
And yet he's proud of those holes because that means he survived.
Anna Jaworski :
Sure! Absolutely. I think the fact that he was able to undergo operations for four separate organs, recover from that, and finish school is amazing, and then for him to find somebody to share his life with and to have a child. What a heartwarming story.
Sandra Wallis :
Yes, it's explained more in my book, "Not What I Bargained For," in more detail and I'm sure everyone would be really interested to read all of the idiosyncrasies that happened during raising the four kids.
Anna Jaworski :
Oh, absolutely. What I love is that I saw a family photo from the Christmas of 2019 on The Observer online and you have such a beautiful family. Tell us about your other two daughters and your grandchildren because that picture was just exploding with happy people.
Sandra Wallis :
It sure was. Well, the grandchildren. Amber was the first one. So she was born in 2009. She'll be 11 this year. And then Darrell had little Owen who's three and a half. So Amber was a great baby, Crystal was a good mom and I saw lots of them because she was off for a year and she'd come home and I would start teaching Amber how to sew when she was about four and we would do some cooking and baking and she made a little quilt of her own.
Anna Jaworski :
Oh, how neat! Wow. Go ahead, tell me about your daughter's. The daughters aside from Heather.
Sandra Wallis :
Mm hmm. So Leanne graduated in criminology from the University of Toronto. And then she did a environmental study, got her diploma from Fleming College, in Lindsay, she is a field biologist.
Anna Jaworski :
Now Crystal is the one who's married and has a daughter, right?
Sandra Wallis :
Right.
Anna Jaworski :
That's Amber's mommy. Okay,
Sandra Wallis :
Yes. She graduated from the University of Guelf with a Bachelor of Science in animal biology. So we always had lots of animals at the house when she grew up. She's working in a large grain facility. So she's the director of procurement for their Flower Division and she lives with Kevin For the last seven years, he has two children, but they're all about the same age so 15, 13 and then Amber's 11. So they really get along well.
Anna Jaworski :
Well, what did writing this book teach you about yourself and your life? Because it seems to me you've had a very rich and complicated life, but you've had so many great accomplishments and seen so many miracles in your life.
Sandra Wallis :
It's so true. It wasn't my idea to write the book. It was all my friends, and they kept saying, "you know, you need to write this. You need to tell people about all the miracles in your life." And so it took a few years to write but I learned that I was a strong person and could handle a lot,
Anna Jaworski :
I think. Yeah, I just think that's just so obvious. That you're a strong person. Wow.
Sandra Wallis :
That I could handle difficult challenges and I could persevere even when the situation seemed bleak. That was a biggest thing.
Anna Jaworski :
Yes, yes.
Sandra Wallis :
Because when you're going through it, you don't really realize how much work it is. Like you're tired, you're just trying to get through the day. You're trying to keep the kids alive so that Darryl could get the transplant, or Heather could be on your own. We always wanted the four kids, but I never imagined that my life would have been like this, for sure.
Anna Jaworski :
I don't know anybody who could imagine the kind of life that just portrayed for us. Tell us the title of your book again, and where people can get a copy of it.
Sandra Wallis :
I did enter the Word Alive Press contest, and I won. And that was a sign for me from God that he wanted me to publish it. So that was how that came about. So Word Alive Press is a bookstore in Winnipeg, Manitoba. They sell it. I know that it's on your online bookstore. Babyheartspress.com. It's also available from me. I have copies that I can mail out. It's $24. That's including the postage to continental North America. It's also available on Amazon as a hardcopy or an Ebook if you would prefer that.
Questions and Comments :
Amazing all the different ways we can get books nowadays, isn't it?
Sandra Wallis :
Yes. And I'm on Instagram, Twitter.
Anna Jaworski :
So how would people find you on Facebook or on Instagram.
Sandra Wallis :
Facebook is Sandra Wallis and it's W-A-L-L-I-S, like Sam, dash author. And there, you can find a lot of different stories about my journey that are in the book with lots of pictures. My Instagram account would be Sandra.Wallis, and again, it's W-A-L-L-I-S, like Sam, and the number one.
Questions and Comments :
You certainly are number one in my book for being an amazing mom. We just celebrated Mother's Day a couple of weeks ago and I hope your kids spoiled You rotten because you are really such an amazing mother. I'm just so honored to even have you on this program and get to know you.
Sandra Wallis :
Well, thank you very much Anna, I love you too. Like you do a wonderful job of interviewing authors, having really neat speakers every week. Really amazing, and now that you're having your book store, I think that's a fabulous idea.
Anna Jaworski :
Well, thank you. Thanks for coming on the program today, Sandra. I do feel so honored to be able to interview authors and parents and heart warriors. I love my podcast because I get to meet people from all over the spectrum in the congenital heart defect community.
Sandra Wallis :
Mm hmm. Well, I really enjoyed talking with you today, Anna, it's been really special for me.
Anna Jaworski :
Oh, thank you. It was special for me too. But that does conclude this episode of Heart to Heart with Anna. Thanks for listening today, my friends. If you've enjoyed listening to this episode, please consider becoming a Patron Just go to www.patreon.com/hearttoheart and pledge a monthly amount to support our program. It only takes a few minutes to make a big difference. For the cost of a pizza, you can help us to continue to provide great programming for the CHD community for an entire year. Have a great day and remember my friends, you are not alone.
Closing :
Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart with Anna, with your Host, Anna Jaworski, can be heard every Tuesday at 12 noon Eastern Time.