Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux and I’m Lori Saux. Today we are once again joined by Melissa Kynoch via Skype from Birmingham, England. You may have seen Melissa in the BBC documentary series LIFE AND BIRTH and what moved us most along with millions of the show’s fans were her positive attitudes and exuberance during her pregnancy with her son Bertie. Well she’s back with us and we couldn’t be more pleased. Melissa thank you so much for joining us again on the podcast.
Thank you thank you thank you for having me yeah thanks so much.
The last time we talked to you we discuss the show in your story and you briefly mentioned you’re down syndrome themed baby shower which Lori and I totally loved and I want to make that a thing yes so please tell us more about that it was such good fun it was such good fun not just them I thought you know people are I knew I was going to need help from people I was going to need everybody to be educated and on boards and and this is probably the best way and I don’t think probably one of my biggest fear was when I when I see this is what plans to drive I think my biggest fear was is he going to be ostracized by other people not because send me because speak at our state the silly little things you know %HESITATION we get let the faithful in and I completely relate to that light I’ve never spent time with anybody that’s got any kind of disability that’s all I worry about my understanding people and I will be back communicating with people so you put somebody who sent his spot dance in Jordan I can see why am I gonna be embarrassed when they get in the bar is then it is not because I mean it’s not because I’ve got any prejudices it’s just a situation I’m not used to I’m not used to be on an educated so before I fail a lot a new and my friends and my family going to say I like that and I don’t want them to feel anything different about it the scene %HESITATION for them to be %HESITATION constable like that you know they tell you we signed I don’t want to be with that he said that’s my responsibility to help educate them and send it will you know will learn together and I think that’s that’s what I wanted to achieve with My Baby Sharon I think that’s it looks like right she asked me that I don’t think anybody in sales with IBM constable of ICO tokens made by sea %HESITATION Alaskan questions and just wanted everything to stay very so did you just make information available did you how did you play gay I think this is a great thing and I love that it’s just a celebration I’m just I’m curious because I think it’s such a beautiful I think it’s beautiful because I feel like sometimes with our kids that that right to celebrate is taken away you know what other things are put there for us and I would love for every mom when they received the news to say Hey I know what the theme of my baby shower might be you know how did they execute that what did you do I had a loss of billions for the down syndrome association sorry I have to go right the lady jays and he lands open lanes my sister brought masses Silva twenty one and he invoked the late I hatched and posted so and I had a pretty tight so as a marketer in signing and detention compensation from a fantastic they sent me lots of stuff they sent me and batching using key rings outside what’s it to give access I am the father has sent an attached to those to devote scrolls and build the motor the tax return but each take high and I insisted that dies syndrome association he actually do leaflets and pamphlets for family members are able to include tax so it was really a by being together and get in the arts in the agency nobody could be embarrassed about anything and and passing on information and not since gangs with it the kids supply in the back to cancel it my friend cooked the most amazing conveyance it was just really about us all being being together and starting to introduce people to say something that was going to be a big part of my S. model he said that and you know what’s on the small now something else we didn’t embellish on during our last meeting was the time Bertie spent in the hospital and his overall health right now and is is that something that you would be willing to share with us yes they put them and he he had his surprise he was diagnosed with the complete VS day he had his heart repair on the twenty second of January and that leads to surgery went well the whole cell patch that was fantastic you always knew that they were would be a possibility that the files would still lady and said that was not a surprise that hate that they would just be involved leak on on both sides to it and he has a more moderately on the one side reach Hey play the best case scenario is his body as he grows and and get stronger his body will adapt to the top of hot that he’s got and he went need further surgery all right if it doesn’t or it gets worse and now replace the valve so that will be and second open heart surgery and he was in hospital for a long time with that in one week’s news in step was nigh and that site is nine weeks and he just I think it’s very common for babies with down syndrome just couldn’t scale flat west St Louis as oxygen and which he and he did very well he also has had spinal surgery a couple of weeks after his heart surgery he was tested for hash Browns when he was hit by its five weeks old which she came back negative but he’s specialist arm that was also with the if somebody that Betty Sanders rallies and consultant for you spell and he thinks that is maybe more of a live sets hash Browns save the company devoted chai and so you say it’s it’s not and it’s not the same it’s not major and he needs to have suppose it trees otherwise you know he can’t he can’t pay he’s constipated about the supposed to trace but it’s not it’s not hugely drastic so you have a procedure on his ballot which didn’t really work but it didn’t last so we’ll have a look at it back in a few months time but this is the agent didn’t want to do anything drastic so soon after his heart surgery anything based on a small but he really has just gone from strength to strength every clinically he’s very well he looks very while he’s very nice he’s gaining weight I’m I’m leaning him %HESITATION he tends to speak everything I I didn’t think at I think you can slide I don’t think he has problems swallowing he just prefers to speak to that’s a lot more fun so it just practice practice with the silence but he’s staying he’s staying very very very well I’m very happy with them we’ve had he said he’s healthy so nine I’m really not too concerned about it and the hot file I just I just don’t think it’s something worth worrying about our current change anything cabinet when about this if at any time nine in between if there is no surgery in between surgeries so we just we just enjoying some normality and I will be by that if we need to say I eat health wise I think he’s game ready ready while you mentioned a V. as de and for those who maybe don’t know about it can you can you define what a V. S. D. S. Alka said the slight net atria ventricular septal defects if I said that right basically he hacked the the the the hottest before trying to set the top to change this the whole day was so large that it was legally one chain back and then the hole in the bottom two chambers was very large but not to speak is the top one and then Ross and then have to working cells which act as guides and for the blood flying it was just sitting one flax leaky valve say they have to close the holes have to patch those %HESITATION and then I took the one south trying to create two working files and I always knew that that was going to be the most difficult parts of the century and that they would never be able to night to fully functioning valves that they would always have some leakage it was just bad depending on how much how much that was soon unfortunately it’s a little bit more of them the motley type for on the one files and did you find out about this before or after Brady was born I knew everything by fourteen weeks pregnant okay yeah everything and everything’s very very early on and he’s he’s hot was the size of the grains of rice and they detected east heart condition incredible that’s amazing yeah and what how old was he when he had the surgery and so it was John you said October November December January instance just say between themselves like yeah three four months old and you mention normality how are you doing with I know that’s that’s a lot for him to be born and to be in the Nick you for so long and to now have two surgeries under your belt and I know that that is definitely a concern for parents with us who are pregnant with children with down syndrome that’s one of the the main concerns that they definitely put in your mind when you’re pregnant how are you doing good you know many I’m fine I will walk you through the house stuff I think I am that was foreign to me when I was pregnant because they just these long lists of farm very frightening at darkness is that he could have M. white nine and you know it’s it’s fine I think probably what you don’t know it because it didn’t show in the in the active so it is so I mean you know that I am but his dad wasn’t involved at the time M. Richards canteen in the least contact with me throughout my pregnancy clinics M. is back in Pakistan for was not really knowing what he what he wants it and I have to say I have to stress is nothing to do with that that see how having down syndrome fact Richard Lewis and when I told which affects the smartness is which is that what what’s not popular which is always consent by embassies hot condition I think you should find that you wouldn’t survive because he’s he’s heart condition but the reason why which wasn’t involved M. was at David Backes just Richard was nine and didn’t want to be in a relationship with plain text we didn’t choose to present his own plans didn’t choose to have a beta of ID with me said he wasn’t arranged a room to begin with and then he met but I see back in early December and just completely on us today fell in love with the scent completely devoted to him say this last week stint in hospital with buses and heart surgery Richard was involved in in St in fact he hasn’t expected sergeant Richard left down by London and didn’t live here and I just need your knee that he he will be going back to them to the contacts feel life from inside since he was admitted to hospital on the night of January which is really hasn’t left the Seasiders relocated here and so yeah I need him to get realistic and I’m not in a relationship okay parents in and he does that he’s always and he’s always loved died days always love temple big surprise this emotional level Smith side by side mentality I always say it’s a date have huge issues with both his house now because I hope this helps with switches in these different tastic fantastic hands on dad he’s really really capable very very capable father essay in my Lafayette that compared to what it was in it I am not alone Nikkei sadly this is a breeze exact this hal yes and I’m I’m good so I’m it emotionally this is the happiest over the thing this is the most content I think the pain is probably the most grounded dive as a as a as a file you know I think my life she said is my loss is really great I have a large salary really found here I thank you very much it’s beautiful speaking of day have you talked today about his diagnosis and and and if you have what did you say to him you know I talked to him about IT in as in on time not too old to him about I see I just told him about it like he understands what I’m talking about you know and he M. he %HESITATION he asks the question and I didn’t think eight the questions are any different a fact he didn’t have time to drive I did have a chat with him the other died came with me to the hospital and celebrities hot stand yesterday and we drove past the parent accommodation way we staged a silent game and data with many digital and I said to him that’s not normal society because they have such a long stay in hospital what we did was very special we were very strong as a family to do that and it was very difficult for us but it was very difficult for you not to be a high decision on time because I want him to realize like that he’s really strong or what what people worked with dissident voice it’s incredible you know he was fantastic he he he’s not where he wanted to be wants to be a high but he did really really well seven and I want him to night that it was extraordinary and not everybody experiences what what he went straight but other than that I mean we just don’t really like you to think of it and sent these very bright he your last questions but like I say I don’t think he asks any questions that’s a you didn’t have down syndrome M. twenty six NG cheap address the demand to ease cheap fast but I. my cousin’s son also has a heart condition he has a red and black condition is fine he was fed through chief said Davis it’s already saying that that was nothing that was nothing new for him to save IT within a cheat you know the answer these nice say he’s just taking it %HESITATION taking it orally strollers well that’s one thing about inclusion is that you get to see people in our community all different kind of people and you had said that you hadn’t had an experience with similar down syndrome prior to the diagnosis really had spent time or heard much information about it you know in detail and that’s kind of where I see that we’re moving and progressing as a society inclusion of of children of all disabilities in schools and in our community and not just brushing them to the side and then and then the next generation or or even this generation gets to to experience them and understand them and then there’s not this awkwardness and and this this strange vernacular I’m I can hear the way you talk about down syndrome it’s just beautifully said and the way you’re gonna talk in your household is going to teach day the same thing and it’s it’s really beautiful is it really is and I said I might my second cousin and has that same drive and I had a briefly when I was a kid I mean I don’t really remember it was the very young and and that was the end time that wasn’t on that medicine that was the I. any contact I ever had to be anybody really is who had since soldiers disability or landing date well that’s not what it’s going to be like the guy he will go to school with kids with down syndrome %HESITATION kids with physical disabilities you know him it’s just fantastic what do you think that I’ve since realized as well as many of my friends are in the same position as I am that we didn’t have that contact we didn’t have that at school said has been the separation not because the best day all these barriers are broken down for them as well and for their children and that’s just the inclusion it’s fantastic I mean he’s he’s he’s changing the world he really is I think we’re I just think we really dressed for where we live and serve him and they have to change this S. S. schooling here thirty okay it’s mainstream school I am sure is which is first on the seventy six seven think what’s interesting Melissa can I ask why was it the only time you met your second cousin was once early in the sense that it’s not not it was my my dad’s cousin’s Georgia and I mean she’s a lot older than me I think she’s in her sixties nine and and dad didn’t see a loss as to the family say and it was just that it just wasn’t really able to talk to my family that we thought we’d mix is that any really mixed race and my mum so that’s kind of the questions that I grew up with was and my mom’s family and not so much my dad’s family unfortunately what a different time that she grew up in compared to what the time is gonna grow up and when it comes to attitude toward down syndrome yes hello yes can mean just incompatible completely different thank god and just as a mom you had a you deal with the stresses at an everyday you speak so beautifully about your piece and you’re grounded ness can I just can I ask you where that comes from yes sure and so something tells you what it was it showed in the in the active site is I’m also recovering drug addict so you guys and if he if you guys I’m in the program you probably know what I mean yes yes well I mean he is a good point to listen in the county said they think they don’t know if I cross that finish it said yeah I’m and and and and was tossed it finishes which are in plain sight this is rated twelve yes that and say and I will K. entries for the stiff program I have a sponsor I have spent sees and I do need to change that is that is that what my steps in their arm and felt very connected with the fellowship and that’s why I’ve lost that spiritual way of life is granted may I stand I would most definitely given me the outlook on life the art house I am a different person and because of that and and and that is that’s how I can be positive bart birthday because it’s taught me to be in the main event and a big bloody grateful yeah well it’s it’s really beautiful and and I think that that is is something that I hear when you talk is such %HESITATION such a focus really on just the beauty and life and really when it comes to the core what really matters whether it be you know getting through the neck you or medical challenges and just staying focused on on your son and not letting a diagnosis be in the forefront which I have to tell you I wish they were you know there were times during my when Liam was first born at for the first couple years that I wasn’t so graceful and I think it’s really I think that’s really beautiful and I I hope that going forward every mother has that is is is given that support and and that the focus and I think it was just because the focus on down syndrome at least when Liam was born though I know it’s changing was not a positive thing and I think the more we get the message out there that it is it’s it’s beautiful and this is our our child and every child has challenges that %HESITATION that that starts to change the message and I I had to ask you because you really have such a great you have such a great focus it’s such a gift it’s a it’s a beautiful beautiful gift and and your boys are so fortunate to have that as part of their of their foundation thank you I think I think it’s criminal to rob a woman as enjoys her pregnant say yes it’s wrong and it was or wasn’t going to let anybody do that today because I I knew that I wasn’t going to get to see this again I was so excited stars so excited said blessed to have both the boys something I wanted so badly that I wasn’t going to let anybody walk me moment of joy and excitement you know and and I think it’s wrong for anybody to do that to a mom and because of so much he died places because the diagnosis doesn’t might the person doesn’t know it doesn’t and I have to tell you we’re just smiling over here just smiling this is it’s wonderful is there something that you’d like to maybe tell parents the parents that find out of their their child has down syndrome anything you’d like to personally say to them it’s gonna be a cash it’s it’s gonna be a cat I think I am I I always want to be very careful on I mean I don’t like the way I did slice anyway and but it’s very castle we trying to shut down people’s feelings because I the fed be during my pregnancy and it’s I am best intentions people are want to take away any painful feelings but the right thing to do is just to realize somebody to feel the feelings and just experience and that’s their fear and not stand I’m selling today and not to minimize it always shuts it down I went to just listen and night a lot of the time I didn’t feel harassed some people with the best intentions but they just wanted to kind of take white take away the ceilings and it’s just a journey that I needed to go on strike my suggestion to anybody who is having any difficulty with that the day pregnancies find somebody you can talk to find somebody who’s going to really really listen to yes I am I am really blessed to have these fantastic support network it’s as these my my sponsorship family in my in my fellowship that has really helped me in my my sponsor in particular is that she doesn’t try and shut down my feelings she advised me to experience and she allows me to experience so that the the the Sierra and and get it all right and when she put some perspective on it for me just brings me back into reality and I’ve got that and and not everybody has that same my suggestion would be to find a and it might be that you have to pay for it you may have to pay for a really good therapist medical kinds that that you just six and seven and I’ll say it because just not being pregnant is scary anyone the pregnant forty one forty four my biggest fear is I would lose my baby because of my age you know the adviser than people just saying no no no you’ll be fine %HESITATION so I’m not being hurt you know it’s just so important to have that back all right let what is it that I always thought I was very lucky and you know the big huge massive thing that I have that help me and I didn’t get it until I think he was maybe %HESITATION five days old six days old but thankfully right while I was at the beginning this them as having Baxi always we’ve been with me to the hospital Hey sue ray he came home the day after I was born and then the day after that we would meet me today a guarantee I notice on the wardroom one if the nasties handed me a book and it was and by this is great that I spoke about an idea wouldn’t change a thing and this book is facing massive families who are living life with dancing drumming and the focus of the book is to challenge negative perceptions of people with down syndrome and all my work I know I’ll think it’s beautiful are you still that’s the key words and the all of these health issues and that may be may be on the ice I chance he he might be able to do some of the things that might be dying will battle today and this book showed me that Bessie hateful eight will be able to do many many different things you will have a fulfilled life you know and I was so sorry emotional but reading this book is is one of the most beautiful things and it came to me you know it’s not going to K. Y. early on with with that say it would be really nice and happy when I was pregnant because I would watch her for that and a lot of the stuff that I you know it’s all done on the internet it was just really really beautiful Balkans that’s what I would recommend parents to get is something like that life and the things that you read on the on the internet I think I am we have to be careful with saying and you know don’t worry your child will do that you know they they will go to school okay will welcome it well you know he he might not you might be seeing seventy commentary and and and that’s all right you know it does if they see and is it never able to control his bowels in a castle right east Bessie is always going to be cheap fact that so right if brassy will any of the receipt yeah go to communicate non verbally that so you can E. thirty never books that say you can’t if you can’t do gymnastics that said cash it doesn’t matter what you can and Kant date because we left him in the system would have the Fantastic Four film license I think I just didn’t want to give anybody advice but there is this thanks to the suggestions that that is what some may and jam and keep things keep me and granted yeah I don’t know if any of that made any sense totally makes sense I’m glad you mentioned the book from wouldn’t change a thing because first of all W. C. eighty wouldn’t change a thing has been a great supporter of this podcast and of our films in the past through the disability film challenge they’ve always promoted us on their Facebook and Twitter pages %HESITATION but there’s such a positive and supportive group this parent led organization sells this incredible book on their website and I’m going to put the link in the show notes but wouldn’t change a thing is so amazing that they will send this book at no charge to any expectant parent of a child down syndrome as well as relevant health professionals just contact them and I’ll I’ll put their email address as well in the show notes but it’s W. C. H. E. book at G. mail dot com at and Melissa I want to say I hope that we didn’t shut you down when we said about Brady being able to communicate so and you know what what you guys and and give and what what is different when I next the families children with down syndrome what they showed me was your life will feel normal and that was really important to me it was still normal because states that show no it’s your name known listening having a child with down syndrome is your new normal so normally it’s the same as you know with your other children and it was I never saw a cent didn’t feel shut down by you guys not not so and it never got shut down by that it was more kind of maybe you know good intentions of some friends and family that wants to make me feel back to Iran but didn’t he may but do you guys have got nothing to worry about apologize you don’t change anything that you do either no but I think I learned from you is that you know the truth says is that even though I want to put someone at ease I think it’s very important for them to accept be able to express to express that fear it’s a great point it’s a really great point and I am mine for anyone when they’re talking tavern if they’re a parent with a child Johnson just as they go to inform someone to let them go through their emotions is that’s like you said it’s very important because nobody can do that for you I thank you for the insight it’s a pleasure and with that in mind you know our podcast is called if we knew then and we kinda and most episodes with and and if I knew then statement is there something that you particularly that you could point out that you wish you knew then that you know now that would have put yourself in a better position to not have some fears as one thank any such a big thing for me is that or I just wanted to know that life is going to be normal and it is it is it doesn’t fail on in minutes in many died by diet you know I wish I was licking this law I fell it noted Alex whiting for health issues so and what they seek to see what Betty Campbell content will Harry he will develop each that’s not my lan my life is not like that my life these normal eight separate feeding and not decent and screaming get tight please take and you know it’s normal and that’s I’d like to have nine that then yes it would just be normal well we are so blessed to have been able to talk to you again %HESITATION it’s really been so wonderful thank you so much thank you for asking may I was still quite blown away thank you I look forward to this new friendship I am yes I love your insight and I and I love your attitude and I want to thank you for you for sharing that with us because well it’s really uplifting and I think it’s inspiring %HESITATION just to hear it just to hear that I’m interested in your story in the future with and Bernie and and what what he’s gonna do and and and all the things that he will do I he said he’s going to shake things up he’s he’s he’s got a twinkle in is always that one he’s definitely has I think what you guys do ease the incredible you know you start practice thank you you’re very impressive as a human being Melissa and it’s such a it’s a such a gift to meet you and get to talk with you know and I think for me I go back to when lamb was born and how we felt when we got the news and even though still at I’d like to say I had I think I had your attitude but I I would like to in reality think I had just a portion of it in me as far as this is my journey and it’s not gonna rock me and still being rocked I think that if I would have heard your voice and your story and your attitude that that would have banned the little piece that I needed to say thank you one and this is going to be normal this is our life and we’re good there’s there’s some hope in there and there’s light and I’m so glad that we can put your voice out there for people to hear because you’re just such a nice light it’s just a beautiful light thank you guys thank you yes very very clients thank you very much my my friends and family which completely disagree and say am I on the pain in the bum of course that’s what they’re there for right and I thank you for giving up your mommy time at the at the end of the day because I know that is precious I thank you for for your time thank you thank you guys thank you very much they said it’s been great and please keep in touch.
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