I receive a lot of lovely messages and I love reading them, but today I got one that took my breath away. Not in a good way. To the lady who sent the message, I know your intentions were good and I know you meant no harm. I just feel that this is a point I need to make and I hope you understand after I make it.
I woke up to a message informing me that they had been praying for my son. Not a prayer for his well being, but a prayer to take his Down syndrome away. I find it so upsetting because that is not what I want at all, and River or our family do not need or appreciate those prayers.
Understand that I’m not saying prayer is a bad thing, not at all. Pray for health, pray that people are accepting and caring, pray for a kinder world and a bright future. But do not pray for my sons Down syndrome to disappear; do no pray for him to be ‘cured’ and do not pray for a part of him to not exist. He has an extra chromosome that is part of his genetic makeup, he is not sick.
Anyone who has followed us for a while will know that I believe in the positives of differences and that they should be embraced. Whether it’s disability, religion, race, sexuality or anything else, I believe that diversity is a good thing. I believe that River is exactly who he is meant to be and that he is living the life that was meant for him. His extra chromosome is not a mistake, it is a part of him and I have never once thought that River was a mistake. Never.
I have also never once prayed that River didn’t have Down syndrome, not one single time, so please don’t you do it either. He is not sick, he does not have an illness and he does not have a negative existence. We don’t want anything to change!
One thing that I am certain of is that River having Down syndrome is NOT a punishment from God. There are many things I don’t know, many things I question and many things that I’m unsure how I feel about, but that is not one of them. I am 100 percent certain that my son is not a punishment; my son does not have Down syndrome because of something that I may have done in my past. End of story.
How can somebody or something that makes me so extremely happy be a punishment? I’ve said it many times before, that the hardest part of River’s life is not his diagnosis, its other people. Society seems to have a much bigger issue with Down syndrome than we do.
River’s family does not want him to change, so neither should you.
He is not a mistake.
He is River.
I am River 
This is beautifully written, you sound like an amazing mum. #bloggerclubuk
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Thanks, I’m not sure how amazing I actually am but I try my best! Thanks for commenting x x x
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This post made me so sad for you. River is like every child; beautiful. Just the way he is. He is lucky to have you as his mummy. Take care. #Bloggerclubuk
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Luckily I have a pretty thick skin, and also I like to see the best in things. If I let every ignorant comment worry me I’d spend my whole life sad, but I honestly do think most people have good intentions. Hopefully the lady will see where I’m coming from, but if not I guess not everyone can be educated. It’s definitely the worst comment I’ve had so far! Thankfully on the whole we have really positive reactions. Thanks for such a lovely comment x x x
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Oh you are welcome. You are right that perhaps she just didn’t think about what she was saying. Your son is always so smiley! You have a beautiful family. Xx
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I’m sure she thought she was being kind, but actually it was the opposite. I’m not really a religious person either so we are at complete opposite ends of the scale! I guess we choose how to respond though and I can’t let silly views and comments affect my kids. Unfortunately that’s just part of our lives and I’m sure it won’t be the last comment I get. Especially choosing to share so much of our loves online. Part of the parcel I guess. And you’re right he’s such a happy guy, both of my boys always have been. Except today, today we have teeth breaking our and the real grumps! x x
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Bless him!
You take care. Xx
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River is River. He could be no other way. My Grandaughter has a very rare chromosome deletion. Intitial prognosis after being diagnosed was very bleak. She’s 18 now and yes has health issues but she’s sassy, independant and a total joy to be around. Although we are cautious sometimes as she say’s what she thinks lol. Over the years people have said ” Oh what a shame , wouldn’t it be lovely if she was normal ” Excuse me, please define normal. We wish her health issues would go away . But Lauren will always be unique anything else and it wouldn’t be Lauren. We feel blessed to have her in our lives. So l understand……….
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I know a lot of people who have received the very same comment, and I like you don’t really know what ‘normal’ is. Who decides? Of course health issues are not wanted, but to change the actual make up of our children is not what we want at all. It’s sad that people can’t understand that. Your grandaughter sounds wonderful! x x x
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I’m shocked that someone would say something like that, even if they meant well. River is a human being with so much going for him, he needs prayers for that to continue, not to cure him of something that isn’t even wrong! x
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Yeah it was a shock for sure! It took me a while to process it, and luckily I am pretty good at shrugging things off. I wanted to make it public though as I like to think most people want to learn. Thanks for commenting, very much appreciated x
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Oh wow! While I have not gotten prayers for my son’s Autism to go away, I have received many “well intention” messages from family and strangers alike, asking if there is a cure and if so why don’t I give it to my son. I feel the same way you do. He is who he is meant to be and I don’t believe my son would be the same awesome person he is if he was cured. Your boy is so beautiful! And I love the last part of what you said about the hardest part of his diagnosis isn’t his diagnosis but its other people. That is so, so true! If I could change this world for my son I would do it in a heartbeat. It’s society that has a problem with disabilities because of society’s constant need for perfection and what is considered “normal”. I always say to people, “define normal”. We aren’t meant to all be the same. If we were then we would be. I love your post hun! thanks for sharing:) #bloggerclubuk
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There’s tat quote isn’t there. ‘I wouldn’t change my child for the world, but I would change the world for my child’. And I would love to be able to do that so much. I like to believe that most people have good intentions and are trying to say the right thing, but sometimes comments can cut deep! And you’re so right, societies need for perfection is everything that is wrong with the world x x x
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Hope you are OK and understand how you feel completely. Your son is an individual and has a right to be the person he is. Are you in touch with @DownsSideUp at all? I am going to send her a link to this
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I’m fine thank you, it was a shock for sure but I try my best to make positives out of negatives. Thanks so much for this nice comment, it’s very kind of you. @DownSideUp is actually one of the very first blogs I found following finding out River has Ds and it is wonderful x x x
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Sometimes I think people don’t realise how upsetting the things they say can be or that although they may be said with good intentions they are in fact the complete wrong words to use. You sound like an amazing mummy and this post is so heartfelt x
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I’m sure the lady meant this in a nice way, but I cringed when I read what she was doing. As you say, River is exactly who is he meant to be and to imply he is a punishment is not only totally untrue but so offensive.
He’s a gorgeous, unique little boy who is exactly who he is meant to be.
Thanks for linking up to #BloggerClubUK 🙂
Debbie
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I find most people have good intentions and I very rarely get offended. This one did hit a nerve though but it’s all good, getting it down on paper helps me work through things 🙂 x x
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I love and share your outlook on life and I think diversity is so important, too. You sound like a wonderful mum and River is lucky to have you and you him. xxx
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Thanks very much! I hope I’m a wonderful ish Mum, not sure I am worthy of the full title haha. I’m certainly lucky to have him though, even if he is super grump today x x
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River is so lucky to have you as his mom! Your attitude is really lovely & so positive. Of course, it’s not a punishment. I think that diversity brings understanding to others. You & River are doing an amazing job of that! Thanks so much for sharing with us at #BloggerClubUK
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Honestly, if I can just make a handful of people change there mindset then I’ll feel I’ve contributed something. Thanks so much for a lovely comment x x
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I totally understand your feelings about this. Had River had an associated problem, like a heart or digestive problem for example, then one would understand the prayers to help with this. But he is who he is, and that’s your wonderful little boy. Why would you change that? It’s lovely that you are so understanding of the person’s intentions too. #BloggerClubUK
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I really do always try my best to remember that I was uneducated once to, and most of the time I succeed in staying calm. This was my biggest test yet to be honest! Thanks for commenting x x
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He’s a gorgeous boy and I think you’ve hit the nail on the head – surely any prayers should be for society to become more accepting and tolerant towards people who are different in any way – not for God to remove differences. #spectrumsunday
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Exactly, because differences are not a bad thing! It’s so sad that society thinks they are x
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love this, beautifully said, and great job of educating 🙂 #SpectrumSunday
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Thanks very much and thanks for commenting! x x
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It’s so sad that somebody would message you something like that right intentions or not. I think I would of been annoyed super read as usual Thank you for linking to #ThatFridayLinky Please come back next week for
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Honestly sometimes I have to work realy hard at not getting annoyed, but I remind myself that building barriers around us and not taking the time to educate harms my son even more. It’s tough though as I’m a bit feisty by nature!
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Wow, this is such a great letter. I love your expression of love for River. I agree, he is who he is and that’s totally awesome. Of course, you may wish for the health issues that sometimes come with Down Syndrome to keep away from River, but that’s not the same as wanting him to be “normal”, whatever that may be. #spectrumsunday
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Who decides what normal is anyway right? |I just want both of my boys to grow up knowing that being whoever that are meant to be and want to be is just fine, whatever others may think. It;s sad to think that people who don’t know us assume that I wish I could change him. Thanks very much for commenting x x
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Oh he is absolutely gorgeous – that smile! It really seems like some people don’t think before they speak (or type in this case) – that’s a really strange and pointless thing to say to you. Well done for speaking out against it as by sharing how it made you feel, you may well have stopped someone else from being so careless. He is so lucky to have you as his mother #DreamTeam
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You’d be surprised by how many people make silly comments without thinking, most don’t mean any harm though and actually think they’re saying the right thing. This was definitely an extreme case though and luckily the majority of messages I get are positive! It’d be a lot harder if they weren’t. Thanks for commenting! x x
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The last part really says it all. It sounds like you’re doing a fantastic job. River is such a little cutie. Just looking at his sweet little face has brought me joy! 🙂 #ThatFridayLinky
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Honestly that little face helps him get away with all sorts haha! Full of mischief he is x
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Your quote: ” the hardest part of River’s life is not his diagnosis, its other people.” is so powerful Hayley, and I can see exactly what you mean. I’d like to think, as you say, that this lady meant no harm with her comment but I can absolutely see how upsetting it must have been to read. River is River and River is perfect, and his mum is incredible in my opinion. Thanks for linking to #DreamTeam. x
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Thanks so much, that’s so nice to read! And I always say that the hardest part about River’s diagnosis is other people, it’s the only part that I find really tough to be honest. But, along the way I have also met some incredible people so I never let it get me down. Thanks so much for a really kind comment, I’ve been in a car for 10 hrs today wiht 2 kids and this made my night haha! x
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It sounds like you both are amazing people, mum and babe alike! This world we live in, it requires a path of learning for us all, but a longer path for most…at least these days. River is River! A beautiful boy who has already made a large difference in the world, for the better. xoxo #DreamTeam
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That’s such a lovely comment, thanks very much x x x
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Some people don’t understand difference – maybe they could pray for that. your son is a wonderful, beautiful little boy from what I’ve seen – maybe they could send a prayer of thanks for him. Great post. Thanks for joining #spectrumsunday
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Exactly. If somebody wants to pray then pray for acceptance. Thanks for commenting 🙂 x x
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When my daughter was pregnant with baby number two, she had an amniocentesis. The baby was diagnosed with DS. I prayed for a healthy baby. That’s exactly what we got! With an extra chromosome for good measure. In my family we have weight struggles. But not my healthy (now 19 years old) grandson. Not one health issue has he ever had. I am thankful for God’s answering my prayers. Erik is perfect and perfectly healthy. The most contagious thing about him is his smile!
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Thanks for sharing your uplifting story with us, I love reading comments like these. None of us know what tomorrow will bring, enjoy your family x x
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