CdLS Connections
CdLS Connections
A Mother's Journey- Charlotte Nordin & Vera
Join us in a conversation with Charlotte Nordin, mother of 13 year old Vera who was born with Cornelia de Lange Syndrome (CdLS). Charlotte shares her journey as a mother, finding meaning and how this gift has opened her heart. Charlotte shares the challenges, spiritual perspectives and practical ways to find balance in the day to day.
You can watch this podcast in video format on our YouTube Channel: https://www.youtube.com/@CanadianCdLSFoundation
You can follow Charlotte Nordin in Instagram here: https://www.instagram.com/charlotte.nordin?utm_source=ig_web_button_share_sheet&igsh=MXh6NnRlNHh5OXY1ZQ==
You can listen to Charlotte and Vera's album here: https://hummusrecords.bandcamp.com/album/celle-que-je-suis
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Would you like to a guest on the show? Email us at support@canadiancdlsfoundation.com and we would love to hear your story helping others not feel so alone of bringing valuable expertise and experience to families, clinicians and their community.
Welcome to the CDLS Connections podcast, where we share, learn, and explore everything about corneal adaline syndrome and other rare syndromes. Today, we're here with Charlotte Norden, who's the mother of Vera. Vera was born with corneal adaline syndrome. And it's not because of the disability that you will ever love them less. I remember when Vera, when she was born, they thought that she was deaf. Deaf, sorry, not deaf. And so we went to a school in Lausanne for deaf children. And one of the girls there, she passed away when she was very young. And one of the teachers in the school, she said, well, we have a lot of children who are passing away. And One of the most difficult things that most parents face with regards to the death of their child is that many people out there think that it's easier to lose a child who is disabled because it was dysfunctional to start with. But actually that is so untrue because maybe you even love them more because they so need you. And even at one point, point at one level I find that it is also I mean even as though even though it is so hard to always be of service to one human being and how demanding it is there is also a part of it that is quite rewarding to have someone there who so much loves you and who so much needs you because there is no one out there who loves me as much as Vera does and who counts on me to be her stability, to be her anchor and to be her everything in life. Yeah, I guess it's at the same time heavy. As heavy as it is, it's also such a like a gift. It is such a word of duality. The gift of the positive things are so balanced by maybe it's the negative that is balancing up the positive and the way that when you go through hell you really know what paradise might be looking like or you know when we were um preparing or when we were just exchanging messages and we're talking about this this emotional and being emotional and i can definitely say that i've become much more of an emotional person since i have vera because you know it's just like i feel i sense it is for real and there is no filter anymore it's just this is a This is to be taken into consideration and there is no masking and no persona to be put out there. Yeah, I think
SPEAKER_01:they're the perfect example of just complete pure being. You know, there's not, you know, unconditional love,
SPEAKER_00:you know, and I'm just, they are who they are. Yeah, and we have to ego that.
SPEAKER_02:Yeah.
SPEAKER_00:So I often think of that as like, what would be Emmy's ego? yeah and total despair and total yeah total despair at one moment at some times and total bliss at others and yeah there is no program there is no calculation about you know how to get to A from or to B from A or to you know it's just now in this moment and now it's overwhelming. I think that that's probably like thinking about it because you know certainly I don't think I don't know if I'm ever gonna like to look
SPEAKER_01:to feel like you have to look for how to get from A to B but just to B.
SPEAKER_03:Yeah.
SPEAKER_01:Because there is no map and the more you preoccupy yourself with it the more distracted you are from the moment. Yeah. And then because I still don't have the answers to many things I mean certainly The logistical day-to-day things get solved and you learn about how they respond to things and what their preferences are and what they like and how to manage certain situations and how to avoid the stressors for them. You know, whether it's, you know, get over exhausted or too much noise or too much stimulus or, you know, strange people or whatever it might be.
SPEAKER_00:Those are all, I think, helpful over time to learn those and you almost do that to just protect yourself.
SPEAKER_01:Because I'm scared to, you know, because you're walking on eggshells too in terms of trying to make sure that there's not going to be a meltdown.
SPEAKER_00:Yeah, yeah. And that is so interesting because one of the biggest stressors, I mean, like they've been working on stress and making analysis and trying to understand, you know, why people in our society are being so stressed all the time. And what they've come up with is that Everything that is made, the more unpredictable, the more stressed you are. Like if you put a bunch of people together and there are the ones that get a shock or a pinch, you know, for something. If, you know, playing a video game and they lose and every time they lose, something pinches them. And if they know it's a systematic thing, option that the pinching is going to happen, then they don't get stressed. And if it never happens, well, obviously, they don't get stressed either. But the group that was getting the most stressed was, you know, if sometimes it happens and sometimes it doesn't. And it's the unpredictable part that is the most difficult to be handled. And I could really much relate to this because with Vera and I guess for many uh parents who have uh children with cdls is that we have to live on this eggshells all of the time and you never know when the dragon is going to be waking up or um i mean dragons are wonderful beings as well but um so um the the You always try to be one step ahead of when boredom is going to turn into crisis. And also what I can be finding in myself is that I'm carrying a lot of trauma because of those crises. And sometimes maybe there isn't a reason to be worried or even stressed about or to have that trauma that is being reawakened. But because there is such a heavy load of it, and even though I've been working with trauma therapy in many different ways, and I'm a therapist myself, I can so much tell that it's like it's building up all the time. You never really get a rest from it because you live in it all the time. That may be one of the most difficult things It's like being in the war front for, in my case, over 13 years now. And for you, I guess, with your dynasty, yeah, almost 18. So the nervous system for me is, I'm working a lot on my nervous system. And I've been trying to find the most forefront research on how to be working on it to help myself out with it. And it seems to me that there is a lot to be shared from carer to carer. And how do you deal with this? How is your nervous system doing? Because, I mean, it just pulls down our whole entire system, our health, our youth, our, I mean... Our joy. Yeah. So how to live, how to live happily. Sometimes for me, I just get into total despair and thinking that, you know, I'm just never going to make it. Even though I know all the hacks, I know all of the bodily movements, all the meditations, all the connections that I need to be doing. Yeah. Like now, I just came home from a vacation, two beautiful weeks in Egypt, and then I got home and I had Vera for 24 hours, and I can feel that all of this relaxation, and it was so beautiful, and I can just fully tune into the beautiful life. And, you know, the stressors come back so fast, so quickly, so easily, even though I thought, you know, like, now I'm never going to be diving into the stressors again. I am good now. It just doesn't work that way. I wonder if it's also my husband went on a backpacking trip in Lapland for like eight days and he came back and he shared those same sort of components. And I often notice you're sharing this. I think about it. Is it almost even worse to go? I have friends who
SPEAKER_01:has a child with special needs who's 18 and she would rather not go because for her returning from that break, it's even, it's almost like it didn't even happen. So I've never really thought about it further. I mean, every time, and in many
SPEAKER_00:ways, this is why I enjoy having a light outside of the home. And I always envision myself to want to be like home with the children.
SPEAKER_02:Yeah.
SPEAKER_00:Oh, that's interesting. And,
SPEAKER_01:you know, whether I had fantasies about it, But in reality, it was never going to be, even if our second
SPEAKER_00:child didn't have CDOS. But for me, I need that break, like to recharge, where I can have, I start seeing my child too. But then sometimes I feel really guilty. Yeah. And actually, that was what I was thinking of, is that it took me, I think, maybe 10 years to allow myself to have those breaks. And it was very conscious work of, you know, like... self-therapy to allow myself some self-time you know and one of my friends she said you know well you're a marathon runner you know like it's not just you having a sprint and then you can rest when you're a marathon runner you need to have breaks and I remember I had this very very big guilt issue when Avira was for three entire weeks with my parents back up in Sweden and And oh my God, I felt so bad. I felt so guilty. And they were so tired, even though they were trying to say that everything was good and that she was so sweet. I mean, I know. You just wanted you to have a break. Yeah. And the more time passes by, the more I also allow myself to... It's like... Some other parent with a child with, I think, autism, it was in CDLS, said that, well, most people just didn't even understand what it is on a daily basis to go through what we're going through. And even we forget because I don't know if you've heard of the story of the frogs and they're swimming in a pool. in a jar that's on the stove and a saucepan on the stove. And so at the beginning, the water is cold and they're just swimming around and then the water is getting warmer and it's nice and they're relaxing. And then all of a sudden the water starts boiling and they're not even realizing it because they're becoming numb to what's going on. I mean, this is a story that people talk about because of our society and that we are so numb to some of the terrible things that are going on. But to me, it also seems as sometimes we don't even realize how unusual what we're doing is. And I think, you know, already so far, I think of those people who are in their first year of dealing with those things. And I mean, that whole other
SPEAKER_01:discussion we can have. When we were talking earlier about becoming experts in filling
SPEAKER_00:out papers. Yeah.
SPEAKER_02:Paperwork.
SPEAKER_00:Copy and paste that 16 paragraphs about what are the things
SPEAKER_01:that your child needs to get ready in the morning. Yeah. How many pages would you like? And I find in those times when I'm writing that
SPEAKER_00:out, like we're asked that what support does your child need with activities of daily living? Yeah. Okay, that is such a hard question. Yeah. Okay, so we're talking about like, where's the toothbrush, put the toothbrush in the hand, put the toothpaste on the thing, brush the teeth, floss the teeth, rinse the teeth, you
SPEAKER_01:know, everything. Open the tap, close the tap. You know, you have to, for many of those funding things, you can't just say it needs full assistance. When you start breaking it down, because there are elements, of course, that our daughter has learned over time. Thank you for, yeah. It's not just like if you, and many of you, many, many fund, especially in Canada, if you fill out some of the support funding forms, like there's certain maxes and you want to get the max and we at the foundation try and support to make sure that Don't just say that they need help getting dressed and fed.
SPEAKER_00:That is what I'm managing all the time. Thank you for telling me. But when you start writing it out to that detail, it's like, not only do I do that for myself, I do everything. And then you put it
SPEAKER_01:for that entire day. Let's say it's on a school day. And thank goodness for the amazing schools that... can if your child is able to find a school or a daily program where they're safe and they're cared for and they're loved for um
SPEAKER_00:that's fascinating but there's still a whole other you know 18 hours to the day yeah and you start writing that list and we normalize the things that we do so even
SPEAKER_01:so our daughter is going to turn 18 and it's we're so used to it and even we've normalized the fact that you know uh her dad has to change her pad for her uh and it's like everything from washing to everything and who would have thought you know who
SPEAKER_00:anticipates that but it's so normal but then when other people are like oh my gosh you're saying you change your daughters who's a teenager their period pad and i go oh my god i could never do that oh yeah yeah and so in those moments it's you realize how different your life is. And that is not only to say that the material anticipation you need to have, because you also have the psychological anticipation, you know, and it mixed up with the material things. I mean, it's just, there is so much to be thinking of all the time. I mean, we need three, four, five braids. I don't know how many, but many. And yeah, I... trying to add that anticipation of, okay, if the meal is not ready now and that she is getting hungry and, you know... And then how long is the meal going to take? And then what's happening at the same time? And then you have your own life that's happening where somebody is needing you because you're also,
SPEAKER_01:you're a sibling, you're a spouse, you're a daughter, you're all these things. And then, okay, well, like...
SPEAKER_00:In terms of I feel like they also sense when you're distracted. And so sometimes on a good day when you're like totally engaged in the meal prep and they know that, you know, they're like you're totally they can sense if you're not.
SPEAKER_01:You're just kind of like thinking about other things as you're cooking and they're like waiting for you and maybe they're occupied or not. But soon as they sense that you're not all like present, they start. You know, there's knowing that something's off.
SPEAKER_00:Yeah, my little bedroom hates my phone. I cannot answer a call. I cannot answer a message. I cannot do anything. I mean, I have to be super focused on her. I mean, of course, I do answer you messages. But when I know I'm going to spend a few hours or the weekend with her, I know that I'm not supposed to be planning on anything else. And that is... That is also something, is that sometimes it would be nice to, you know, well, try to organize some social events, meeting up with people, but you never really know in that anticipation either if it's going to be possible or not. And also thinking of the meal time and how long time it takes. I have this image of me and Vera together. having breakfast lunch and dinner and people in our family because we're a patchwork family and my husband who is Vera's father-in-law and Not father-in-law, but stepfather. And he would walk in and out of the house. And every time he would come back, we were sitting there at the kitchen table. And it's almost like we haven't moved. I mean, of course, we have been maybe for a walk, maybe been playing out somewhere in the garden. But yeah, it just takes a lot of time. Yeah. We have Vera and Emmett that have joined us. Yeah, so... we were talking about just how we normalize the day and how challenging it can be. When you were talking about like even organizing some sort of social event, I feel like it's almost like even organizing this thing, it's like we know something could happen. We totally accept that a
SPEAKER_01:meltdown might happen. You might be two hours late or you might have to cancel or this whole thing might not end up, we end up not recording. So in some ways, there's
SPEAKER_00:some forgiveness in the special needs community where there's a tendency to... want to make plans with the people who are much more understanding and flexible. It's interesting, though, because sometimes I've had the feeling that Vera would play or interact more with children who don't have disabilities. For instance, my best friend's daughter, she would be so sweet and kind to Vera and she would go up to her and talk to her and, you know, be interested in her. And if it lasts for too long and it's It's becoming too insistent for her. She cannot cope with it anymore and it's too much and she needs a break. But it's sometimes been easier to be socializing with people who are not in the special needs field because of the quality of interaction. And at the same time, I find that there is very little people out there who don't who have not experienced having a child with disabilities or a sibling or you know anyone in their family who would sort of know about it who can have the who would be an empath enough to understand and maybe to just feel into what the other one is going through in his or her life or even to have the delicacy or intelligence to say that I have no idea of what you're going through, but I highly respect it and I'm going to try to understand. And then there are people out there who would just go like, what's the deal? Why is it complicated? Why can you just not come? And there is space and room for you. Just make it happen. We will welcome you. And if we say that... well, maybe it's going to be too much. Maybe it's going to be too loud. Maybe to do two or three activities in one day is going to be too overwhelming. Maybe they will not just tune into that so easily. Whereas for others, it will be bigger. I've
SPEAKER_01:also
SPEAKER_00:had experiences where people want to avoid the topic.
SPEAKER_03:Yeah.
SPEAKER_00:Or it's more of a sympathy. where they sympathize, where they feel sorry for you. And then they distance themselves in some way. If you do bring up like, well, I'm not sure it's probably going to be too overwhelming. And then they feel bad. that they suggested it or that they should have modified the event or then it becomes like all this complicated. Yeah, it's true. Actually, I have a friend who I called her up one day because I've been having one big burnout and then I've been on the edge of being or like sort of living in a semi-burnout state all the time. But I remember just before my big, big burnout, before crashing down, I would, uh, I called her and I said like, I'm, I'm, I'm really unwell and this is so hard and it's, it's, uh, it's becoming very complicated. And, uh, and she said that, you know, like now you have to, you have to deal with it, you know, professionally, like you have to call someone else. Like I, I, I'm just your friend. I cannot, I'm, we, we all have our problems in our lives and, um, you may be having your problems with Vera, but, um, you know it's it's too much for me to uh i know she didn't say it's too much for me but you know go and go and find professional help she said and um i guess in one way um she was probably right um and now i um and for me it was kind of complicated too because i i i went to a to a therapist a psychoanalyst you know or like whatever kind of therapy you know uh cbt or how do you call it yeah And I also find it not so easy to find people who are good at doing it and also people who can understand what being a parent to a disabled child is. It's definitely not something that they study at university. And many times I've been confronted to this of being in front of a person who would have no clue or that that It's quite strange to say, but that empathetic understanding of what it could be like. And also that, well, sometimes I'm going to come and I will be having a beautiful day because Vera has been great. And in the morning she ate beautifully, she got dressed beautifully and she went to school beautifully. And other times it's just been awful. horrible. And then when it's been horrible, I'm very happy to have someone to talk about it with. And at the same time, I'm so tired of seeing myself as this whining person. He was just crying all the time about how terrible life is. And I don't want to be that. I want to be a happy, fulfilled person, creative and okay, being a mother of a child with special needs, but also being a woman and my own rights and being out there and trying to make a living. And that for me is one of the most difficult parts that I've been having to face is that, I mean, I'm a very creative person, but sometimes I'm just so wrecked and so tired that, you know, going to meet clients is just going to be not possible. And sometimes being in front of clients and being in that very, very fragile state inwardly can be building up the trauma as well. You can have many different types of trauma, social trauma and working trauma, and I can definitely relate to all of those. Yeah, we've had a lot of young families that have... Obviously, the level of marital stress and couple stress in those early years, we can talk about that. But trying to find somebody, we've really had to work hard to try and find families, people, experienced therapists with experience. I mean, personally, we've had the experience where through an employer, we were connected with family therapy, trying to manage families. you know, our special needs
SPEAKER_01:child, as well as a Sibri, and just our household was just crazy. And when we called, what we called, got an appointment, and we finally called them, the lady therapist said, your problems are too big for us.
SPEAKER_00:That's amazing. Oh, but that is so interesting. I mean, thank you for saying that. I mean, to me, it builds up in my own self-esteem, you know, and I think I need to hear that too, you know, then it's... You know, what we are doing is beautiful. And, you know, let's feel good and strong about it. In the moment, though, I felt like, oh, my goodness.
SPEAKER_01:Is there nobody there to help us? Maybe. I mean, we pulled through, obviously. We're here now. You have an uncurable disease. And I think this is, you know, in the area of sort of work, like you were talking about sort of the
SPEAKER_00:impacts of this kind of– the challenges of day-to-day life, what that causes over time and all those things. I think there's a major gap in that whole therapy realm, whether you want to call it psychological support or even just in terms of it should be, I think it should be automatic when somebody is given a diagnosis. First of all, there needs to be support in how you handle that diagnosis and help parents through that part, not just give them the diagnosis, but to help them But then over time, to have access to that, where it's not waiting till the crisis point, where you're perceiving it's depression or you're hitting burnout. But that's part of like a holistic health system. And that there isn't just that, oh, well, you know, your blood pressure is up and all those things that you can measure. But then all those other elements where people around you see that you're not engaged in the community, the same. Yeah. Whether workplace or whatever it might be, that there actually should be ongoing support for families that's not waiting until, you know,
SPEAKER_01:you're falling off the cliff and you're in a hole and you can't get out.
SPEAKER_00:What happened to me was that when I was about to, well, be falling off the cliff and I felt that I was just about to fall, I called the hospital. And so I live in Switzerland and Geneva, which is obviously one of the richest countries in the world. And And I said, I'm about to fall, and I'm a mother, a single mom, and a disabled child. What do I do? I mean, what is happening to her when I'm going to the psychiatric hospital because I'm in a severe state? And they said that, well, there is nothing. There is nothing for you out there. And so my parents live... They live. I mean, they're getting old as well. I mean, some people out there are, I mean, they helped me a tremendous lot during that period after I fell. But it was just quite, quite scary to see that there was no official support system available. To help the people. I mean, imagine I would have no parents. Imagine there would have been no one out there. I mean, what would have happened to her? And so now what I've heard is that if that would happen again, the only option I have is to bring her to the emergency room. And then they would take care of her. But I'm not happy with having Vera at the emergencies. I mean, she hates hospital. I mean, she gets diarrhea. She arrives at the hospital because she's been so traumatized there. And they don't have the right care providers there to be able to... They don't. And especially not in Geneva. I mean, they don't know what CDLS is and they barely take into consideration disabilities. I mean, they just two years ago set up a program to... Yeah, to take care of a disability. So it's definitely not done yet.
SPEAKER_01:Going back to that, do you want to share your story with how Vera was diagnosed?
SPEAKER_00:Yeah. So that was in comparison to what you've been sharing with me to how long it may take in other countries. So Vera was born... Seven months and a half after, during pregnancy, yeah. And so she was born with a cesarean, because her heartbeat was not too good, and that the placenta, is that how you call it, was getting too thick, and so the oxygen wasn't circulating well. Okay. And that is the reason why her heart rate, her heartbeat was it. Yeah, the way it should have been. And so it was urgent to get her out. And so she was born and she was tiny. She was weighing 1.3 kilograms. I don't know how much that is in pounds. Yeah, it's like two times
SPEAKER_01:2.2.
SPEAKER_00:So two, just under three. Just under feet. Yeah. Yeah. And those were very tiny. Yeah, she was absolutely tiny. And then she was being put in one of those small little... Or in the glass boxes. Yeah, the isolat. Yeah, isolat. Yeah. And the only way I could have contact with her was by pulling in my hands into the isolat. Because they wouldn't get her out of there because it was dangerous for her to get out. Yeah. So, I mean, that... That way of being welcomed into life is quite terrible. I mean, she was well in mommy's belly and all of a sudden, you know, and I think also that that is bringing, I mean, that is adding up to the difficulty that it might be for her to separate from me and, yeah, in life as well. And so I've been trying to help her with that as well. So I would walk around there at the hospital and look at the other children who were also being born premature. And I would see that, well, my Vera is different from the others. She didn't look the same. And I mean, she... It was not just that she was premature. There were other things. Her hands were smaller. She was all hairy. She had a lot of hair. And she's got this beautiful Frida Kahlo monobrown. I mean, I didn't know what a CDLS child would look like. And I was asking all those questions to the nurses and they were being very evasive because they could see, obviously, that there was something that wasn't similar to the other children. But they didn't have the right to say anything. And three or four days after that, I was being very anxious at that time, and I asked the nurse who was taking care of me at the maternity hospital to give me something to sleep because I wasn't sleeping. And she wouldn't give it to me to start with. She was... no, but she said, do you believe in God? I said, yes, I do believe in God, but just for now, I think it's not enough for me to sleep. I'm going to need this rest for what I was sensing was going to happen. So three or four days after, they booked an appointment with me and Vera's dad, and we divorced or separated. We never married two years after Vera was born. And And so we got this appointment with the doctors, and there was a genealogist. A geneticist. A geneticist, yeah. And also the doctor who followed me up, an obstetrician, and a few other people, all in white robes, white medicine dresses. And And they said, well, Vera has Cornelia de Lange. And I said, Cornelia, what? What is going on here? And I understood something. Maybe not too nice was going to be said because there was this box with Kleenex so that we could cry freely.
UNKNOWN:Mm-hmm.
SPEAKER_00:And I said, well, what is it like? Is it like Down syndrome? And the information we got was so vague, so vague. And they said, well, it depends. It depends on what type of cornelia de lange she has, because it's a very wide spectrum diagnosis. So Maybe she will walk. Maybe she will talk. Maybe not. Maybe she will live. Maybe she will die. We don't know. And I mean, that was about what they told us. And so we walked away with this information, and the geneticist said that, oh, we will keep in touch because I am very fond of the children who have CDLS. I think that they are smart, they are good communicators, and it's one of my favorite disabilities. I mean, that was not a very... I mean, it's a bit particular to say that, but... And he said, well, I'm very interested in hearing... what you will have to teach me because there is so much that we don't know so I mean it was a nice it was a nice way of being humble I guess as a doctor so what happened is that I went up to the I went up to the to the glass box where Vera was and to the Aisala. And I put my hands on it and I said to Vera, what world have you been forced to be born into? I mean, maybe on a soul level, she wasn't ready to be there. Maybe she didn't want to come and we forced her out, you know. So every option was possible to me. And then she opened up her eyes for the first time. And I cannot imagine the effort it took. Yes, but I am here now. You know, and what it meant is that I am here to stay. And I chose to go through all of the tests because we had been testing, you know, because they thought that maybe there was something we had tested if there was any Down syndrome. And she, you know, she just, she managed all the way around because I think that Vera is a very beautiful, old, very wise soul who incarnated into a very, very beautiful, particular life and she has got so much love and so much wisdom to bring it to this world and she has got no words to speak out this wisdom and she knows that we her mother is going to speak out her wisdom for her and I will do everything I can and everything I know I've been using my artistic skills to create art with her to write books with her to try to to to spread out to spread out the message and so what happened after that the diagnosis was told is that we we drove home and i collapsed in the car i just you know there was no one there and uh i don't know what happened it never happened to me before i was i just got numb and and then for I think two days, um, I stayed in bed and I was on my phone and her on my computer and just reading about CDLS and trying to understand what that, what that diagnosis was. I called my friends, my closest friends, I called my family and, and people were being very sweet and supportive. Um, some of the funniest comments I got was, uh, Thank you so much. They are so into their ego or whatever you'd call it. And, you know, with people with disabilities, it's just wide open and it's fresh and it's honest. And when you organize a disco with them, you know, people dance and it's fun. So that was what one of my friends told me, which was kind of sweet. And I still remember that today. Do you think of what she said then? meant something different to you then versus now? Yeah, I think I didn't really, I think I didn't, to me, the world collapsed. I think I've never experienced such a state of anxiety. As you know, it's like the hole, there is just a big black hole opening up underneath your feet at that moment. It's a vertigo. Yeah. I think it's hard. And when I hear stories like that, it's been a long time. It's been 18 years. But I remember sharing the diagnosis with my friends. And in that time, I was still going through the
SPEAKER_01:loss of a healthy child. So you have anger. And anything anybody said was the wrong thing.
SPEAKER_00:But now, of course... If somebody were, and I've tried to be super cognizant, especially when new families contact us about how we respond, because how I respond now is not necessarily how I would have wanted somebody to respond back then. It's like, what sort of, what situation are people in in that time where they haven't slept and they're extremely stressed? And it's probably the most difficult news they've ever had to hear and their whole life has not changed. Yeah. Everything you believed in is... not true anymore, and everything that you predicted is never going to be. I mean, it's, well, life-changing, yeah? Well, I think that, but this is something I can observe in many parts of life, is that every time you come with a personal problem about something, or that you're going through something difficult, it's that There is always someone to give you an advice, whereas most of the time you want to be heard or you want to be seen in what you're going through. And so I guess that I think that for me, what was the most helpful was the people who said that they were always going to be there by my side and who just heard me. And even without saying a word, you know, that they were there. Yeah. Saying just, I hear you, I see you. So that was very precious.
UNKNOWN:Yeah.
SPEAKER_01:Yeah, and I think I know that in Down syndrome community, for example,
SPEAKER_00:people who, because it's much more known, immediately there's an immediate contact or diagnosis to the Down syndrome association, and then you right away meet with another mom. And so in many ways, you know, it depends on what people have different views on. different how they view disability and how they view diagnosis and family circumstances. Hearing it from somebody who's been on the journey as oftentimes what we hear when we connect families together is that what somebody for their way on the journey, despite their worldview on
SPEAKER_01:anything, is much more impactful than perhaps
SPEAKER_00:somebody who's a parent of a typically typical child. Oh, don't worry. My son also has ADHD. It could be fire.
SPEAKER_01:And when you're in the moment when you're just bringing your baby home and there's complex things going on sometimes,
SPEAKER_00:and especially when you haven't slept, and we can all respond in an understanding way. I understand they're on a different journey and, you know, from different points in life. But
SPEAKER_01:when you're in the moment, it's very hard to respond in that manner where you can say, thank you for your help. you know, comments or whatever. I understand.
SPEAKER_00:It's very double-sided because I, well, what we did is that my ex-partner, he was a journalist and he had just recently interviewed a woman who had a daughter with severe autism who had turned 18 and so he organized that we could meet her and have a cup of tea with her. And he was just worse than anything else because she was so depressed and And she was so negative about everything. And, you know, she was just going through this period of time where the child had been under 18 and that she was turning 18 and that the caring system was not the same anymore. And she felt... completely lost and left alone and no one to support her anymore and I think that that wasn't the easiest thing to be hearing at that moment I think that also maybe it's easier to connect with people who when you have a newborn child to connect with someone who has a child who maybe is four or five or six or a bit younger and And I mean, I'm just, now that Vera is 13, I'm starting to be more and more interested in hearing what parents with an 18-year-old or 20-year-old CDLS child would be going through. Because it's also, it's, we're talking about this day-to-day or second-to-second living with this particular child. And And sometimes to think of what is going to happen 10 years ahead is a bit hard. Because there is so much to be dealing with just in the moment. And the rest may feel a bit too overwhelming to be coping with. Yeah, and I think there's probably some self-preservation there. Or your defense system is to like, you're just letting things happen.
SPEAKER_01:You're not even paying
SPEAKER_00:attention. That is also probably one of the reasons why I was not too interested in meeting other CDLS families to start with. I remember I very much needed to keep grounded in the life I was living or to be speaking to people who were in what I would have considered normal life and to meet with my friends who had normal children, quote-unquote, for the people who are listening to this ISM podcast. In Vera's school, they actually say children who are ordinary and children who are extraordinary, which I quite like. Yeah.
UNKNOWN:Yeah.
SPEAKER_00:Yeah, it's interesting, the language too. I mean, in Canada, we talk about typically developing. And in Northern Europe, or at least in Finland, they would say disabled. Oh, yeah. So they're not so... And I mean, Canada, people say that the disabled community as well. But, you know, words are what they are. And I think
SPEAKER_01:some people get offended by certain words in certain countries. But, you know, again, when you're in it, there's no...
SPEAKER_00:You know, there's language nuance. But I think, you know, again, the attention isn't to be... Affirmative, yeah. No, it's just about vocabulary issue. Or what is politically... So then how did those early years with Vera? So, yeah, so after the diagnosis, after 48 hours of indulging in understanding what the... and the telephone and the internet of what the CDLS was, which, I mean, was also a bit hard because sometimes it's, I mean, you stumble upon so much information and, yeah, maybe it's too much. Was Vera medically healthy when she was born? Well, no, she wasn't. So what happened is that I went back to the hospital and I spent... I mean, all the time there. Many, many, many hours a day. I couldn't sleep at the hospital, but we spent six months living at the hospital before she could go home. And I remember the very big emotion of having her coming home and driving her home. And it was kind of scary. And she wasn't feeding herself well enough. So she had a reflux and we had to wait for until she was, I think, two years old before she had an operation. Because what they said is that, well, obviously reflux is a very common issue. But because they also thought that maybe it would resolve on its own, they wouldn't make the operation. That... In the end, we got the operation after they waited two years. Okay. So is that the fundoplication? Probably. In English, it's called fundoplication surgery. So they do a surgery in the top of the... Yeah. Yes. Yeah, that's what they did. And then she also started having... very, very bad urinary infections when she got the fever. So it meant that he went up to the kidneys. And so she needed to have an operation also on her kidneys because the urine was going back up. So those two operations were made quite early in life. And then she hasn't had any major heart problems That's great. Yeah. And also, I think that at the beginning, when she was smaller, she had a very, very bad immune system. So the slightest virus or bacteria would make her fall so ill. And we would spend weeks at the hospital to help her up with that. And she would lose so much weight and never gain any weight. And then we needed to work with a dietician to, you know, weigh all the calories so that she could maximize them. It was just such a hassle. Yeah. So is she now eating well? Yes. She loves eating, actually. But she has, yeah, she has a few, she has IBS. She's a very sensitive person. So she can get very stressed easily. So sometimes the digestion is then easy, so I have to be careful with what I feed her. But no, she loves food, and she loves the nice things about life. She likes bathing in hot water. She likes her hot tub every day. Yeah. That's great. What else does she like to do? Well, it was beautiful as well. We went for a walk in the mountains, and she... She wanted to go down off her trolley and she just walked on the ground and she wouldn't move like we're supposed to stay where we were. And she said, well, she doesn't speak, but I can hear her mentally. And she said, can you believe it, mom, how amazing it is to be living on this world, on this planet and to have a body and to be a human being? And can you see how amazing it is and what a gift it is? And it's just so fantastic to hear a little human being who has, I mean, such a complicated life in comparison to many, who still values life at such a high degree. Yeah, that's beautiful. So what are the things that Vera has taught you? Oh, I think that one of the main things that happened to me was that she really opened up my heart. I think I, you know, I've been very interested in spirituality for all my life, and I was always thinking of how to open up that heart chakra. And after Vera came, it's just like, oh, wide open. I was like, I just need to have Vera. And then I understood what it meant to have an open heart chakra. So that was... That was one of the big things that she told me, and she teaches me patience. I think she taught me the nuance between forgetting oneself and being into service to someone, and Doing right is right for the self as well. I cannot give up everything that is mine and that is important for me to be in a balanced and harmonious life and a harmonious being so that I can meet her better where she is, where we can meet at a sweet spot. And that is something that I am aiming for all the time, to... be able to not give it all out because then I'm just draining myself and I mean she is draining she is definitely draining and I have to be very careful about it and therefore I have needed to work on my guilt and I mean the guilt the guilt feeling is has not only been about her I mean I've been having to deal with guilt before she came but she really put the finger on it you know like yeah how do you navigate what's your process in Sort of navigating where you don't just go all in and or deal with the gills. Yeah, I think I need to... The first thing I try to do is to name it and to see that it's there. And... for me it's been very helpful I mean it's quite interesting though because I mean people tell me all the time that I'm a you're a fantastic mother and you do so much for your daughter and she's so lucky to have you you know people say that but it's like it's going into one ear and out of the other because there was this deep down inside guilt that it was telling that I was never doing enough and Maybe it's that ideal, so Vera is never going to be a typically, how do you say, typically developing child. And so she's always going to be sort of, the way that she expresses that she's not well, the way that she... The way that life can be so hard on her, and I take it upon my own shoulders, and I forget, I've been tending to forget that we are co-responsible, and she has her life pack, and I have my life path, and I cannot take upon me everything that is hers, and I have to trust her. And when I understood that I was not trusting her, that changed a lot for me. Because I think that she's such a strong being and she's such an amazing being on this earth. And I want to say...
SPEAKER_01:You're being barricade. What does this mean? Is she like mom?
SPEAKER_00:Nope. She's very happy to be saying that, yes, I'm here. I'm strong. I'm being out there. You can have faith in me. I... I came to live and I came to express everything I am. And also seeing that I think that being on the edge and falling down and the burnout going to that polarity was a proof enough to know that it was not the right direction. So And that I really had to take care of myself as well. Otherwise, she would fall with me. Yeah, yeah. Yeah. So it's a bit of rationality. Yeah. At the same time as it is. Wow. You know, I think I would just really meet the emotion of the guilt, meeting the emotion of being not sufficient, not enough.
UNKNOWN:Yeah.
SPEAKER_00:Because I'm not going to change her. And if I was to, you know, it's like you're making a painting and you want to make it perfect. Yeah. I mean, Vera is who she is. Can I accept her and the way that she is? And it's not about how much I do it or I try to make it better. I have to accept where life is. I
SPEAKER_01:think that's beautiful. Have you figured out how the... You know, when you were talking about that part of yourself that you're still you
SPEAKER_00:and meeting Vera at the point where you can still keep those parts of yourself, how have you figured out, do you conceptualize it with time or in terms of where you need breaks or you just base it on where you're at and you notice you're giving too much and then you've pull back and you find either respite or you take more time in your own creative
SPEAKER_01:work or meditation or whatever it is. How do you, is it on a daily basis you're constantly sort of reflecting on whether you're Falling. Because I feel like once you've been in that hole, you never want to be in that hole again. And you will almost do anything not to drop in there
SPEAKER_00:again. Yeah. And also you get very good at sensing when the hole is getting closer. Yeah. And so, yeah, what I mostly have understood is that when too much is too much, It's too late to react. So I'm always trying to. This is something that I sometimes find difficult because sometimes I hire people to or I organize that Vera can go to a day camp or a weekend camp. And then I really miss her. Because I think, I'm thinking, oh, she was so sweet and I had to let go of her at this moment when she was just having this perfect five days, you know. Or you think we have these often in terms of, oh, we should go get away and especially with another sibling. It's like, did he ever get the time to just ask well with the other sibling? But then when we're gone, all of us are like, well, But she would have had so much fun. She would have totally liked this and it feels like you're empty, honest. Yeah. Is it a process? Is it timing? Or is it just work to do within ourselves? Yeah. I don't know. So... And so one of the things is that now I know that I prefer to feel that I'm missing her, to feel that longing too. And I know that when we're going to find back to each other, we're both going to be so happy and so thrilled and we're going to have the most amazing time. And I can definitely sense that we have much more quality time together now. Because when we had quantity time, honestly, the quantity time was quiet. disastrous and as we were saying that they mirror back to us when we are not well and they show it you know 10 times more if we're stressed or if we're not well or sad or whatever
SPEAKER_02:yeah
SPEAKER_00:so i i'd much rather have quality time with her and know that when i'm with her i'm 100 with her and so happy to be there with her yeah um and so i arrange i schedule up time um the best i can um to now that I know how much time on my own I need and how much I can give. And then it seems to be working quite well. And then also from experience, once again, that those moments on, well, vacation, for instance, when I'm spending beautiful moments on my own without her, Well, then I'm trying to think of all the beautiful moments I will be able to spend with her thanks to the moments I've been spending on my own and without being of service. So I guess that the best way to navigate that is to, well, as always, to experience that jollity of knowing that, you know, it can be so awful when you don't respect those boundaries and you never want to go back there. Yeah. So, and I mean, longing is beautiful. It's like having a nice sweet of candy and, you know, thinking of all the love you have for the other. We can think, relate to that with romantic relationships just as much. Yeah. I think that desire, having desire is one of the most beautiful things that we have in our life. That is what is keeping us moving onward in life. Yeah. I think that one of the problems is that we want to satisfy that desire now. And so when I'm thinking that, oh, I want to be with Vera, and if I'm not, I'm going to be unhappy. Whereas I can think, oh, it's so nice to think of her in this loving way. And I can really, you know, sit with this candy for a long time.
SPEAKER_01:I think this is, when we were talking about how we're sort of, it's the... how we started the conversation in terms of
SPEAKER_00:the day-to-day is so traumatic in some ways. It's very difficult to be so present, to be able to slow down and even just decipher those emotions and those feelings. And I think of how busy life is, especially for those who are raising their child on their own in those early years, especially when it's very difficult to It's a challenge. And I don't know if, I know for me, it started a spiritual journey. I mean, I was, you know, I think the first book right after Emmy was born was Eckhart Tolle's A New Earth.
SPEAKER_01:Yeah. And then that just started beyond. And that for me brought that, you know, whether it was just, you know, self-therapy, because I never went to therapy at that time. But yeah. But it's
SPEAKER_00:very difficult in practicalities because I get caught up in the minutia, the day-to-day logistics.
SPEAKER_02:Yeah.
SPEAKER_00:And it's almost like we need to get away in order to actually feel, like to be able to really sense what emotion I'm feeling. Because in that day-to-day, it's like constant. It's actually, I won't
SPEAKER_01:talk too much about our situation, but when Amy goes to school and she's up in the taxi, Gary and I are like, phew, whoop. Now we can have like an uninterrupted coffee and like really like,
SPEAKER_00:okay, you know. You need those moments to recalibrate. And my main challenge right now is to stay vigilant when I'm on the forefront, you know, when I'm on the war front to calibrate. To keep that peace within. That is my motto. Whatever storm is going on outside, I'm in the middle. I'm in the center of the storm. And nothing can move me. Nothing can touch me. And I'm centered, stable, calm, peaceful. My heart is not moved by this. And the more I try to work on this, and I mean, this is one of the most difficult spiritual paths one has to make. Yeah. But I think that the more we work on it and the more vigilant we are, because I don't believe that this comes without any effort being put into it. And some of the most beautiful spiritual teachings I've come across were all saying that if you lose your guard and if you are not well vigilant, You get caught up in it. You get pulled out. You just dive right into that oblivion and you get into the stressors. And they are so overwhelming that if you're not... Yeah, they take over. And I don't want them to take over. I want to be my own master. Yeah. So some people talk about being in war, the war against our own stressors and trying to keep that straight pillar inside whatever is going on. And it's not happening over an eighth night or over a day. Sometimes it works and sometimes it doesn't.
SPEAKER_01:Yeah, I guess it's to be, you know, also
SPEAKER_00:be forgiving of yourself. Of course, yeah. But it's when you can have those moments where you don't react and you're just like calm in that moment. It should be sell your toe. Yes. But and also sometimes I think I'm not working alone when things are getting too hard. You know, I pray. I pray. I pray. I pray to my angels. I pray to my guides. I pray to my ancestors. And I talk to various souls. Because she is not that stressed being inside either. She is the innocent heart as well.
SPEAKER_01:So how has Vera coming to your light shifted your path in
SPEAKER_00:your work and your creative side? So she, for me, it was like, I don't know if anyone can hear what I'm saying because she has such a loud voice. Ray, you are here. You are here to stay, aren't you? And I was working as an artist. And when Vera came... It's... I guess that my work became more generous. I wanted... It took me more... It was just so uninteresting to have things going on about me. You know, it wasn't about Gilmore. It wasn't about my career. It was about what I could bring to the world. So that definitely could change something. And also... I started making arts with Vera. So we've been having beautiful art branches together. And recording an album that it can be read among the best music labels in Switzerland. It would be heavy. Yeah. Music shows, art shows. It's amazing. And we've been releasing a book. And wow. And with various paintings. She tells me what to paint and I paint. So I've been her arms and I put my artistic skills in service to her. And she has written the most beautiful and amazing things to be told to the world. And then after some time, I guess it was around COVID, I realized that my artistic career wasn't as fulfilling to me as it used to be. And I needed to stop working with people. So I started working as a healer and as a therapist. So that is what I do now. And I've been writing two books that are being released now. One about Vera and one about, well, spirituality. It's amazing. So that are, for me, Vera has been a catalyzer. Things have been going very fast since she came. And it was almost like, okay, you've been playing around in life till now, but now it's time to get serious.
SPEAKER_03:That's
SPEAKER_00:so awkward. Some burring, yeah. And being serious about things doesn't mean that it's easy, but it means taking it seriously. Yeah. She is getting very tired. Yes. Is there anything else you want to share? I'm so happy to be having this conversation with you. And thank you so much for, you know, having people sharing their stories. And it just means so much for the community. It's so precious. Thank you for everything. A pleasure. Thank you for taking the time. And thank you, Vera and
SPEAKER_01:Rafael, for your patience. So what does it mean to you to be with your family?
SPEAKER_00:Oh... Well, it's very sweet. It's like family, you know. It's a CDLS family, but it's a family, you know. It's something that is there that is, you kind of trust one another. You talk to one another as if you were, you know, brothers and sisters almost. It's very rare to find people that you share such common ground with.
UNKNOWN:Mm-hmm.
SPEAKER_00:So what made, because you know, you were talking before about how you never really reached out to the CDLS community and you were kind of just dimming the thing. So what made you
SPEAKER_01:respond to my...
SPEAKER_00:Hello!...in
SPEAKER_01:terms of willingness to meet?
SPEAKER_00:Yeah, because I think that now I've been going through all of those things that I needed to deal with on my own and to make sense of them. Yeah. And I think I've I've come into the moment where I feel the necessity to share my story and to listen to the story of others. And it seems more precious than ever to be doing that.
