Episode Transcript
Speaker 1 00:00:08 Hello, and welcome to the wonder Baba podcast. My name is Sheena Mitchell. I'm a pharmacist and mom of three. I'm here to chat all about child and family health. I really hope you enjoy the show. This podcast is proudly sponsored by Medicare fem sense. Ireland's newest and most innovative ovulation tracking solution. The Medicare fem sense smart temperature patch is comfortable and discrete and is worn under your arm during your fertile window to measure and confirm ovulation women have reported a 93% success rate in detecting ovulation with over 10,000 pregnancies already recorded. Visit Fleming medical.ie/fm sense for more details
Speaker 1 00:00:54 Today, I'll be speaking with Nate fit. Who's the co-founder of the perfect gift charity, which she started after her gorgeous daughter, grace who's now seven years old was born with Dan syndrome. First of all, I'd just like to talk for a little minute about what Dan syndrome is. Dan syndrome is a congenital chromosomal abnormality. It's not an illness or a disease, and it's not anybody's fault. It's just something that happens on a genetic level. A person normally has 23 pairs of chromosomes. 50% come from mom and 50% come from dad. A person with down syndrome has 47 chromosomes. So they have an extra copy of chromosome 21. As a result of this additional chromosome children with down syndrome may share certain physical features. This has no relevance to their development. 95% of children who have down syndrome have trisomy 21. That means their extra chromosome 21 is in every cell.
Speaker 1 00:01:59 Three to 5% have translocation down syndrome. That's to say that the extra chromosome 21 is attached to another chromosome in every cell, one to 2% will have mosaic down syndrome. This is where some cells contain the extra chromosome 21, and some do not. 47% of children with down syndrome will have a heart condition, but down syndrome is not a guarantee of medical problems. In fact, a child's health and activity can be just the same as a child who does not have down syndrome. There is of course, a higher incidence of certain health conditions, which can be treated like thyroid site and hearing problems. Children with down syndrome will likely be slower to reach developmental milestones, but depending on the level of intellectual disability with the same opportunities and love as other children, they will continue to develop at their own pace and have a high quality of health, happiness. And life ahead,
Speaker 2 00:03:06 I was a mama four, uh, a nurse. And, um, I, yeah, you know, I look back and I think what was my life like before grace? I actually, that was a really strange thing. Um, yeah, no, I think I, I, I think my life was only really complete when grace came along, to be honest, I think all our families feel the same. She completed all of us, but look, I was the same as everybody else. I was busy mom, four kids working, racing around doing, you know, doing the same as everybody else, I suppose.
Speaker 1 00:03:37 So how old are all of your children?
Speaker 2 00:03:38 Okay, well, I had my first, as I said, I've had babies in my twenties, thirties and forties. So my oldest is Sean. He's 23 almost. And I have twin girls are almost 20 and uh, 14 year old and then grace came along and she's seven.
Speaker 1 00:03:55 My goodness. Yeah, big gaps, which is a nice way to spread it out. I did it a different way and had them all together. And I, yeah, I'm still a bit shell shook. So I'm, I'm hoping that the, the older crew help you out. <laugh>
Speaker 2 00:04:06 Yeah. A different dynamic in the house, but it's there. It's, it's wonderful. Yeah.
Speaker 1 00:04:10 You are a nurse. Yeah. So you would've had an awareness of down syndrome before you had grace.
Speaker 2 00:04:17 I, yeah, I did. And I worked in disabilities for years as well, so yeah. I also have the first cousin who was down syndrome. Anyway. I was quite aware of down syndrome, I suppose. And even at my age, in my forties getting pregnant, I was very aware that, you know, this, this was a possibility. It didn't bother me put it that way. It was.
Speaker 1 00:04:36 Yeah. Yeah. Well, especially I think when, you know, someone who has down syndrome, you it's, it's that kind of thing that you see the person that they are and yeah. You just want your family to be complete. Yeah. How did you find out or when, during your pregnancy or afterwards, did you find out
Speaker 2 00:04:59 That grace? I found out in my pregnancy that grace would have found syndrome. Yeah. Okay. Um, and we like my pregnancy. Wasn't great. It was, she had a very poor prognosis. They didn't think that she would survive the pregnancy, what she did. So, um, yeah. So, you know, so when she came, then she was even more of a, of a miracle to us that she, she survived what I thought she wouldn't survive, you know, HeartWise, she had two little tiny holes in her heart, which healed the, so she was very healthy. So we were very lucky. I know some parents do end up with cardiac issues and severe cardiac issues, I suppose, that would need, you know, surgeries and stuff. But our kids seem to be extremely resilient. They bounce through these most of them luckily and do very well. Yeah. But, uh, and actually we were lucky
Speaker 1 00:05:45 And that's an interesting point because before speaking to you, I was just reading up about the different heart conditions and the way that yeah. I suppose prognosis in general has changed so dramatically over the kind of last 20 years in general, just cause of medical advancements. So just because a baby is born with a genital heart problem, that's no longer life limiting or
Speaker 2 00:06:07 Not at all.
Speaker 1 00:06:08 No. And no quality of life. Like they can, you know, absolutely repair a lot of issues, which is, is also
Speaker 2 00:06:15 Absolutely it's amazing. Yeah. And years ago they, they didn't even try really. It was just left, you know, the, yeah, yeah. Kids were just, was just, it was just one of those things, you know, they not in the life expectancy thirties. Yeah. Things have changed for, for the better. And yeah, that's amazing really.
Speaker 1 00:06:36 And that's why I think it's so important that we talk about it because to let people know that it's not the same as it was before and that quality of life and happiness and health are all huge, huge factors. You know, when, when you're finding out news that your child has down syndrome. So yeah. Obviously you probably knew a lot of that, but I imagine a lot of moms feel they've no real knowledge about down syndrome, finding out that your child has down syndrome could probably be yeah. Quite upsetting.
Speaker 2 00:07:07 Yeah. And I, it's very scary. And I think a lot of the way how the news is given to you, and unfortunately, you know, there still is an awful lot of outdated, old fashioned ideas, even with health professionals. Um, when you discover whether it's in pregnancy or after that your child has down syndrome and you know, they, they seem to come in a very, a very negative attitude. I mean, I mean, I've talked to so many moms, obviously since we started the six years ago and there's very few that have a positive experience when the news is delivered or, you know, when their baby born, that's why we started the, I was horrified some of the stories I heard, I grace was born, remember commiserated hand and you know, sorry, your trouble. And, oh my God. So parents, you know, said that, especially having other children, but first you knew the big difference.
Speaker 2 00:08:00 Where's the, where's the celebration people are saying, I'm sorry, professionals, you know? Um, I suppose that's, that's so damaging because you're looking at your beautiful baby and, and your tiny baby and, and, and life is scary enough without somebody coming in and, and saying, oh, I'm very sorry as if this is the worst thing in the world, you know? Yeah. Um, and then they start in automatically telling you all the things they won't do in life or all the problems they may have. And I find it funny because you know, when I had my other kids, they just hand them out and go, there you go, you congratulations off you go. And you know, I'd love to go back and say, why didn't you tell this? Why didn't you tell year around the, oh my God, this out of this happen. I know, you know, and the issues, the kids, nobody knows what's down the road. And I have to say, grace is the easiest child. That's come into this house. All my kids have issues of, of different, you
Speaker 1 00:08:55 Knows
Speaker 2 00:08:56 Different. Yeah. You know, I dunno why they would, they seem to maybe preparing you for whatever is down the road, but look down the road is down the road. And I think, I think they need to be able to just say, look, congratulations, you have a beautiful new baby, you know, go home and enjoy. If we may have hospital appointments, we may have whatever, but start on the positive set of the negative because it's so damaging. So hurtful. Yeah.
Speaker 1 00:09:18 You know? No, that's, that's huge. And it's something that you would maybe assume is happening in hospitals. You'd, you'd assume that the positive is given. So it's, it's quite sad to hear that you get that reaction in a healthcare setting, whatever about in the community. Because I think in the community, when you're sharing your news with people who maybe don't have any medical knowledge or training, you can almost expect, you know, just out of yeah. The genuine form of ignorance, you can.
Speaker 2 00:09:48 Absolutely. I mean, none of us, I didn't know, you know, I didn't know the terms I was supposed use around. I didn't know. And I worked in the area so I can understand that health professionals, some of the say's baffling, it's baffling still think in this day and age when our kids are so amazing and they can achieve anything, you know, they're just amazing kids. And they bring so much joy into a home, still a lot to change. And that's, that's it. And it's unfortunate, you know, because so many of the moms will look back and they'll say, you know, I wish I hadn't spent my time crying the waste of time dwelling on the, on the negative. Cause nobody gives them any positive.
Speaker 1 00:10:32 Maybe people should be told that your baby, whether they have down syndrome or not, especially for the early months, you, there are no, there's nothing different. You need to do. You need to go home and love your baby that's
Speaker 2 00:10:47 Baby. Can I not just enjoy her as a baby? Can I not just go home without all this?
Speaker 1 00:10:52 Yeah. Do you have to actively go out and get involved with down syndrome Ireland? Or is that something that is highlighted or are you passed over into their system?
Speaker 2 00:11:03 I suppose it's a charity, you know, you're given the information on down syndrome island, but then central Ireland has, I suppose, branches all over the country and you're kinda told join one of your local branches, which I did. And I suppose it just depends how active the local branches are. And, and I suppose when I did join our local, there was no babies. There was no young children and that's what I needed. I needed to see babies. Yeah. Or, you know, I needed to see other moms that had babies and that just didn't didn't happen. I couldn't find Annie. And it was eight months, I think, before I found Rachel had started and this group, an online group and it was just for babies and it was like a saving. It was like, oh my God, it last, I was talking to new moms as well that had spies and were sharing pictures and it was all positive. It was lovely. And so that's where the basket came outta myself and Rachel felt things need to change and we need to celebrating our babies.
Speaker 1 00:11:58 The name of that group is downright. Perfect. Is that right?
Speaker 2 00:12:01 Downright perfect. Yeah.
Speaker 1 00:12:03 And that's on Facebook.
Speaker 2 00:12:04 Its yeah. And that's what Rachel had started. And I mean, it's grown now. It was an older group. And I think as a, a new parent, I mean obviously a new parent of baby, you wanna join a parent toddler group. You don't wanna go into a group with adults and
Speaker 2 00:12:19 Older kids, you know? So, so that's where you're being's no, no, no. So at the time we seen an idea in Canada, they were sending gift baskets out to, to new babies that were born with 10 syndrome. That was a lovely idea. So I suppose it was incorporating that we met up and said, look, is there a way of getting these baskets out as a gift basket to celebrate and say, congratulations mom, but inviting them to the online group and letting them know that there's a lot of new moms out here that are a bit lost too and would love the support. And so that's how it started and it just grew.
Speaker 1 00:12:52 And that's amazing. So what you're saying is if you are a new mom and you find out that your child has down syndrome, there isn't really a support network that you're sign posted to on leaving the hospital. You really have to go and find yourself I to
Speaker 2 00:13:08 Go yourself. Yeah.
Speaker 1 00:13:10 Yeah. And then grace was a year old and you already had four children yet. <laugh> you had time to fix the world. I dunno. <laugh> I can barely share myself half the days having three young kids. So did.
Speaker 2 00:13:23 Yeah, no, I, I dunno. I think it was a therapy. We started out and got a few baskets together and you know, how we gonna do this? And we got it together now today, Rachel, after the online and look after the basket, I remember delivering the first basket to the baby in that we found out through our little group had been born and it was lovely. And the feedback we got from, even from the hospital, they said, look, this is a really positive thing. It's great. And then the feedback we were getting from the parents on the new group saying, look, oh, this is amazing. This is just what I needed. I need to see other gorgeous babies. I need to share maybe how you're feeling that maybe your own family or friends just don't really get sometimes. Yeah. And, and it was that and it just grew from there. Yeah. I think, I don't think we realized, we kinda said look sure if we start, maybe I'm in CA if I maybe get a few into CA and then you get few Dublin, that wouldn't be great.
Speaker 1 00:14:14 How many baskets have you sent out? Approximately? We're
Speaker 2 00:14:18 Nearly, we're nearly 800. Oh my we're heading towards. Yeah. So
Speaker 1 00:14:24 That's like,
Speaker 2 00:14:24 It's when you think about it kinda go really
Speaker 1 00:14:27 And all, while parenting grace now from your Facebook pages or Instagram, I can see that grace helps you. So I feel like you, oh, you're putting good work.
Speaker 2 00:14:38 Yeah. She's great. Yeah. Yeah. Labor. Yeah. No, she she's generally more of a hindrance than anything, which she enjoys it now. She kinda likes to look through and if I like that it's gone. I'm gonna go where's that Teddy you'll us shov in their beds. And, but um, no, it's nice. And my, my oldest girls love it as well. They love getting involved. They love delivering to the hospital. My oldest son will even do it sometimes if I need, you know, basket to Dublin hospital and it's lovely, I've people through it. And I suppose the are lovely. We got some lovely companies in behind us and you know, initially to help us out and, and you know, the families, even the supported us, you know, by doing little fundraisers and so to keep us going. And I, it was just seeing people connecting online, the younger group and meeting up and families. Oh, you know, I didn't even know you lived down the road, you know, that kinda thing. Yeah. And sometimes it's easier to approach people online than, than it is to say, oh, I know somebody who has a baby with syndrome, but I don't really wanna knock on their door.
Speaker 1 00:15:39 Yeah. And everyone is there because they want to engage. And they want that support. Just like you said, new baby groups are so, so important, but I'd imagine if you have a child with down syndrome, you want people who have the same maybe developmental challenges or so that you can relate or see what source of speech and language therapy or physio or medical checks. So it's nice
Speaker 2 00:16:03 To, what do you think of this? And it's amazing how, as a community, we have so much information to give and, and knowledge behind it, of our own experience, invaluable to a new parent.
Speaker 1 00:16:15 Absolutely.
Speaker 2 00:16:16 But also I think an online group allows as well as much engagement as want. So I know myself, I would like the pictures. I love to see it, but I don't really, I'm not a great one for, for engaging thinking in my head, but I'll never get round to putting it down, you know? Yeah. But it's lovely that you can have whatever engagement you want online and, and the support is there when you need it. And if you need it, it's just, I, you know, I love doing it. I we're actually one of the girls that maybe they keep doing this forever. And I was like, God, I hope so. <laugh>, you know, I, I love, I love new babies and if there's dead syndrome all the better.
Speaker 1 00:16:52 And
Speaker 2 00:16:52 I think
Speaker 1 00:16:53 The biggest thing for you that you have achieved is to create positivity in a situation where parents might feel it's not possible. And actually it should be, it should be a given, as you said, it should be congratulations. You have a perfect child. Yes. Your child has down syndrome. But we said earlier down syndrome is very much secondary to the person that is there and the baby that's in front of you. Like every child. And even there, you're talking about your older kids and you know, it's not like someone hands you over a baby and says, there you go, uh, he's gonna be in the house till he's 40. He'll never move out. Yeah. And that's all ahead, you know? Yeah.
Speaker 2 00:17:36 So
Speaker 1 00:17:36 It's just, absolutely, it's just nice not to have such a big burden.
Speaker 2 00:17:40 Yeah. And I'm not saying we don't need to be realistic. Look, we all have to be real. We know that if a child has health issues yes, of course we have to deal with them. It's not saying, oh, let's pretend it's not gonna be challenges, but for now let's focus on your new baby and they're a baby, they're, they're your child. And they're amazing, you know, and, and celebrate all the positives. I do think things are changing. And I mean, even you have to look at advertising, we see kids with 10 syndrome everywhere now and advertising, which is fantastic. Yeah. You would never have seen that years ago. So there is a huge amount of work being done and a lot of positive. But I still, when I hear of a diagnosis being given in a hospital, so horrific, I think, oh my, you know,
Speaker 1 00:18:24 I know. And especially when you know, many children with down syndrome will grow up to be involved in a work environment and have full social lives and relationships. You know, the medical side is separate because the same as any
Speaker 2 00:18:41 Child, any child can be born with medical issues. Any child can be born with issues.
Speaker 1 00:18:45 Yeah. 1% of children without down syndrome will have the same kind of congenital heart issues. So yeah, you're absolutely right. That needs to be something that you deal with as it comes up and enjoying those early days are so, so important. What are the challenges for a child with down syndrome in your opinion?
Speaker 2 00:19:04 Well, I suppose I can speak about grace. Communication is a massive challenge. Her speech. Isn't great. That, I mean, I suppose she had hearing issues early on, so we dunno if it's gonna stem from that. She doesn't really, so she has words. She just chooses not to use them. Yeah. You know, because if we, we delve far, she'll, she'll tell you the words, but she just, she chooses not to use them. So she uses love, which is amazing tool, which is sign language. Um, she gets that way. So that a major issue for me. Yeah. Um, and a lot of our kids the same.
Speaker 1 00:19:38 Where did you learn the sign language? The love of
Speaker 2 00:19:41 We learned actually through, I think Ireland very early on and they were offering a course and we did as a, and we've, we've done numerous, we involved center Northeast. We weren't getting, I suppose, the services from the HSE that we needed. So this was set up. So they courses as well for families, teachers went and did the course. So in mainstream school here beside us, where siblings went to school and all the kids taught language love, which is fine language. Yeah. Yeah. So, um, all the kids in school now can communicate with grace. So
Speaker 1 00:20:20 It's, that is amazing while
Speaker 2 00:20:22 It's. Yeah. Its amazing. And while it's, you know, negative, it's also a major positive thing of the kids are kids having grace in class. We, he said, you know, we know sign language. We, they know, you know, they love her. I mean, it's amazing how they, they really do. I must said you, our kids are better kids. And it was a lovely didn't even notice that I knew to see, yeah, course I started crying and I was like, oh my God, this. So to hear home teaching their parents language, this is what this means to communicate with Gracely grace is a fit as a fiddle. She's never sick. So in that sense, you know, I was told, oh, she'd be in hospital all the time and you'd be whatever that wasn't true for us. Anyway, our kids would tend to be chesty, you know, chest infections and stuff like that. But grace luckily is very, very healthy. So her, her biggest issue would be speech. And I, a lot of our kids would have issues with mobility. Our kids have low muscle tone and that's part of stem syndrome. OK. So it takes them longer to walk with growth, motor skills and that,
Speaker 1 00:21:34 Because obviously a lot of the, the motor skills and even the fine motor skills can be sometimes connected to a delay development. Yeah. So, so there's a fine line. Is there a physio available in Ireland because really it's the same. And it's funny hearing you there speak about the importance of inclusivity in a classroom because mm-hmm, <affirmative>, I've been speaking a lot about autism recently and actually just the same experience. My own daughter did a podcast there with me recently on her views of autism. And it was fascinating. And in, in a similar story to the dad that reached out to you, I know my own children. I feel like they have a lot more empathy and yeah, in Ireland, I suppose back in the day, there was a tradition of sending children who had any sort of differences away or out of the community. Like every, everyone has a right to belong within their community. And it's, it's so important. So they're, you know, with say autism, a lot of the supports aren't there and that's kind of highly covered in the media.
Speaker 2 00:22:38 Yeah. It's the same, it's the same. They're not covered. I mean, grace has not had a HSE appointment through nav Ireland from when she was six, but she has another appointment in three years for speech therapy, OT, physio, nothing. And this is why, again, we went as a group of parents and started up the syndrome center Northeast in Monohan because of this reason. So I mean, we shouldn't have to do it, but the need was there for early intervention for all of those, um, things. So we accessed that through the center and we're lucky in a position to do that. So she would get regular OT, speech therapy, physio, grace walks. She was very early. She was same as her twins, my twins. They were about 18 months when they walk. She was about the same. So she, she never really had a need for physio, but she does need OT speech therapy. But we access that through the center, which is heavily subsidized. And we're very lucky to be in that position because without us, grace literally have had nothing, no access to services in three years, she hasn't been offered. One thing in three years
Speaker 1 00:23:43 Just seems to be a marriage across every group of children. Oh,
Speaker 2 00:23:47 It's, it's horrific. Um, you know, I actually, I met a mom this morning down at the school who is within the doll this week and she's doing amazing work for her child who has autism and kinda said, look, it's not that I'm not fighting for and I'm not. And I know I, I kind of should be out there I suppose, but I suppose we are in a position that we, we have the center and we're very lucky, but not everybody is able to access that obviously,
Speaker 1 00:24:12 You know? Yeah. I just don't understand though, like it's not on your shoulders, like this, isn't your, this, isn't your fault that we're not supporting children enough. Like it's really, I find that really difficult because I've heard a lot of moms talk about their children who have autism. And obviously now you talking about grace and other children with down syndrome and it's not a problem that the parents should have to solve. You shouldn't have to fight so hard for something that is actually a right to your child. Yeah.
Speaker 2 00:24:45 And
Speaker 1 00:24:45 That's that's, and I, every, everyone I've talked to has some level of guilt or, you know, we're not doing enough
Speaker 2 00:24:52 Should be out there, but I think, and not fight, I don't want fight anymore. We set anymore. I think, look, we set up the center and it's, it's running. And I think it's 80 families now accessing the services, which is amazing for the region. But none of us shoulda had to do that to start with because, and the only reason it's there is because the services weren't being provided. But, um, yeah, it's funny. Isn't you do walk away. I there, oh, thank God. I should have been up there at the do
Speaker 1 00:25:19 It's. It's really important to know though, because if you think about it in a way for children with any sort of additional need, your time with them is maximum benefit to them and you shouldn't be pulled away from your child to try and fix a government. If
Speaker 2 00:25:37 Somebody has to do it, that's what it takes. Is people going up to meet ministry and fight. Yeah. And have to do it. It's it's an absolute disgrace. What's going on at the moment for kids with disabilities.
Speaker 1 00:25:47 Yeah. It's not at all. Right. And I hope look with this podcast, I'll, I'll keep shouting on all your people. And I know I'm just trying to explain, because it's, it's the same as with autism. I think in general, a mom who has a child who has no additional needs or any sort of disability, they are maybe afraid to talk on subjects because they feel uninformed and unable to speak up for fear of saying something wrong. So I think it's nice just to explain to people the reality in day to day, life of everyday conditions so that people don't have that same fear and have informed conversations and maybe raise the lack of services for the children within their community. Because as you, you very rightly said earlier, it's the de to the detriment of all of our children, if we encourage exclusion within our communities. Yeah. So it's so important. And I, I just, I think what you're doing is amazing because it's so positive. It's so lovely. So before we get too wound up and angry, I'm gonna ask
Speaker 2 00:26:51 You, I know,
Speaker 1 00:26:53 Imagine I am a new mom and I come home with my little baby and I found out that they have down syndrome and I go on to downright perfect Facebook page and I meet loads of new Mamies and have a lovely parenting group. Then all of a sudden I receive a hamper. What would be in the perfect gift
Speaker 2 00:27:13 First, there's a letter saying, congratulations, we're, we're delighted. Your baby is here. Um, it's an amazing support group, but when you're ready and you know, we understand the mountain of that's, but lobby we're to support there for the who donate cardigan gift for the just, I suppose, luxury gifts for the mom, if we can suppose to get Irish products, just, it depends actually. And, and I suppose I've delivered baskets to direct provision hospitals where, where babies are very, very, and then to, to home as well. So each basket is very individual. You know, you're not going send to one mom things that are, are, are not gonna be suitable for, for living in a hospital for the next few months. So they they're all individual. And that's why you just make, have them already and go, no, I can't, you babies are twin. So each is different, but basically its the, and for the,
Speaker 1 00:28:14 What is the most useful donation that the perfect gift charity can receive? Is it items for the basket or is it funding?
Speaker 2 00:28:22 If we have, you know, items for the basket is fantastic, then we can fill the basket and they're done. Whereas I find a lot of time we run outta, especially over when we haven't approached many companies because don't like it, cause things are so difficult for everybody over COVID. So we kinda ran outta stuff at the moment. So it was nice to have some funds in the, to be able to go out and buy it's both. It doesn't take a lot to run. I mean, we're all well, I'm, you know, we're all volunteers, so it doesn't take a lot. So it's really, we love to have product and it's nice for companies to get involved. Companies are so good when we, but that's teaching finished college first out, always A's that's what surprised the first in the beginning, when we, we initially put out that call thinking, would anyone support us? And people were like, oh I love this. This is lovely. <laugh> you know, this is a great, oh, you
Speaker 1 00:29:20 Kinda go. What you're doing is amazing. It's so feel good. So positive it's it's just absolutely enriching for the heart for everyone and everyone can be involved. And I know I'll certainly be reaching out to some of my suppliers and um, yeah. Hopefully they can help
Speaker 2 00:29:37 <laugh> yeah, I know. Hopefully <laugh> I have been blown away by the support and that's what keeps you going when you think about this is just that's it. I said when grace was born, I just would've loved to meet up with a mom that, that we could talk about how amazing gorgeous our babies were together. <laugh> and enjoy that's
Speaker 1 00:29:54 It just enjoy,
Speaker 2 00:29:55 Enjoy them. Yeah. And enjoy. And that's what I used say just let enjoy her, you know? And it's a funny one. I mean, there's still days that I get sad. I look at her and you know, when she comes home from school and I love to be able her to tell me how her day went and she can't. Yeah. You know, and kinda, but, but she makes up for then in other ways, I mean, she's amazing in her school tells, blow to blow what she's been to and they adore her. And we're so lucky in that, you know, odd time
Speaker 1 00:30:26 Highs and lows. I parenting
Speaker 2 00:30:30 Journey child at things happen at school. Things happen in life healthwise. And that's just the reality. And I suppose that's what, when people look at grace and you still get, oh God love her. Something like that. You know? You go, no, she's great. She's amazing. Do you wanna meet my other kids? Wanna I your, you know, that's
Speaker 1 00:30:51 B
Speaker 2 00:30:53 It's so I won't, I won't go into talking about my other kid's problems. They'll hear you to listen. They'll hear you. Yes. And they come to the point and they stick in, they go, they got your mom. We know. OK.
Speaker 1 00:31:04 So shout out, shout out to the twins. Go tied to your room. That's what I'm hearing that's yeah,
Speaker 2 00:31:08 Yeah, exactly. <laugh>
Speaker 1 00:31:10 And uh, yeah. That older ad. Yeah. He can do a few more deliveries for you. We can, we can make a hit list here. Yeah. Let's target them. Yeah,
Speaker 2 00:31:15 Exactly.
Speaker 1 00:31:16 Oh, come here.
Speaker 2 00:31:17 Exactly.
Speaker 1 00:31:17 Chan, it's been such an absolute pleasure chatting to you. Yeah. And further educating myself and hopefully some others and anyone who knows anyone who has some good, useful products can donate to the perfect gift. And for any moms out there who haven't come across the downright perfect Facebook page and who have a child with down syndrome, it sounds like a fabulous mommy group and support is so important because no matter
Speaker 2 00:31:44 Yeah, that's it,
Speaker 1 00:31:45 What your, your child is like parenting can be very isolating and it's important of good people around you.
Speaker 2 00:31:51 Absolutely. Absolutely.
Speaker 1 00:31:53 Thank you so much, Jan,
Speaker 2 00:31:54 After all. Thanks for having me.
