CHD from a parent’s perspective – is it wrong to share?

I read a lot of blogs from heart parents and parents of children with additional needs. Occasionally, I come across blogs and articles written from the perspective of children or adults who are living with CHD or another medical condition, or who have additional needs. Every so often, there is an article which shocks me and makes me stop and think; one in which there is harsh criticism of parents sharing their child’s story when it is not their story to share. Accusing parents of using their children for click-bait or making money from their child’s story. An article which makes me question what I share as a heart parent and ask myself whether I have the right to share my thoughts on life as a heart family, when my child’s story is not my story?

Me looking down at baby Jessica : CHD from a parent's perspective - is it wrong to share?

My daughter’s story may not be my story, but my experiences as a heart mummy are part of my own story. Our stories are bound together and I travel the journey with her. It’s not just about the catharsis that comes through sharing my thoughts; there are benefits with building community, with engaging with other parents of other heart children and giving support and encouragement to others. Being part of this community and knowing other heart children will surely help my daughter too – there must be some benefit from her perspective to have friends who will understand what she lives with.

 

I don’t share my child’s story to make money from it, or because I want people to look at me at say “you’re so strong”, “you’re such an inspiration” and things like that. I’m not especially strong – I live this life and deal with the challenges that life as a heart family throws at me because I have to. Like everyone, I have good and bad days. There are moments of frustration, of anger, of exhaustion, of longing for bedtime – because this is parenthood. There are also many moments of joy and delight – moments when everything falls into place and feels utterly perfect. Moments that I want to record and capture and look back on in years to come – a record of our journey as a family.

 

That said, I am mindful of what I share. I do write with the knowledge that one day my daughter may read my words, read about my fears and the way I cope with the challenges. I try to be honest, but I try to be positive too. I would never want my words to cause her pain or make her worry that I would wish for a different life. I don’t. This is the life I have; this is the journey I have been given and I would walk it over and over again for the joy of seeing her smile, hearing her laugh, feeling her arms around my neck. My little girls are the two most precious things in my life. They both bring challenges of their own – it is part and parcel of this wonderful thing called parenthood.  The challenges that Jessica brings are just different to Sophie that’s all.

 

There has never been a day that I have not been thankful to have Jessica. Her half a heart is one of many things that make her special. Of course, I would love to be able to wave a magic wand and fix it if I could – not because I want to change her, but because I want to spare her pain, and because I would wish her a long, full, healthy and happy life. I would not change the little person she is for the world, any more than I would change Sophie. I love them both dearly, just as they are, and they will both always be perfect in my eyes.

 

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14 thoughts on “CHD from a parent’s perspective – is it wrong to share?

  1. Keira

    I remember when you first started blogging, being up with a newborn in the night reading your updates with baited breath. I think you do a great job of sharing your lives in a way both girls would be proud of whilst also being realistic about the challenges. You’ve certainly educated me (second pregnancy I went into my 20 week scan ready to ask more questions! )

    Reply
    1. Louise Post author

      Thank you Keira – I do try to keep a balance between positive and realistic and am relieved that this does come across. So glad that my blog helped you to be well informed for your second scan too x

      Reply
  2. Kim Carberry

    I think it is important that we share about CHD’s to raise awareness….
    I would have loved to have read blogs when my girls were diagnosed but I couldn’t find any…..What I did find were horror stories.
    Thank you for sharing your and Jessica’s story! x

    Reply
    1. Louise Post author

      Thank you Kim, raising awareness is so important and sharing stories does help other families. I think it is important to be mindful of what we share but I think that’s true of anything we write about our children and not just sharing stories about CHD x

      Reply
  3. mummy here and there

    I think you are entitled to share, it helps give understanding and comfort to parents in similar situations. If a parent shares they have achieved swimming success is that wrong to as it is not ‘their’ story. I think you do brilliantly X

    Reply
    1. Louise Post author

      Thank you – I think there is a line to tread between sharing and over-sharing but I try to stay on the right side of it as much as I can x

      Reply
  4. Plutonium Sox

    I think every parent blogger faces the same dilemma about how much they share. But as long as you don’t share anything they wouldn’t want people to know, or refer to them unkindly (which I know you never would) then I think it’s all done in the best possible taste. I love reading your blog and part of the reason for that is because I really feel that you express your love for the girls so eloquently. I’m sure your children will be proud to read it when they’re older.
    Nat.x

    Reply
    1. Louise Post author

      Thank you so much Nat – I think you’re right in that there is a balance between what can be shared and what shouldn’t be shared and I try to keep on the right side of that. So glad that you enjoy reading my blog and that love is the main thing that comes through in what I write – I would hope that if my girls ever read my blog, that’s what they would take from it too x

      Reply
  5. Debbie

    Hi Louise, what a lovely post. I don’t believe that you are sharing only Jessica’s story, she may be the one born with half a heart, but her condition affects the whole family, making it a family story. I can only imagine how many parents your blog posts have reassured. You never come across as woe is me, you always seem to say it as it is and I’m sure that when Jessica is old enough she will be proud of things you say.

    xx

    Reply
    1. Louise Post author

      Thank you Debbie – I try not to come across as woe is me – I might have those moments now and then but I’ve always tried to be as positive and strong as I can when it comes to dealing with the challenges that being a heart family brings. If our story helps to give hope to others and know that they are not alone then that’s a good reason to keep sharing it x

      Reply
  6. jeremy@thirstdyaddy

    I’m going to echo what everybody else is saying. Keep on doing what you are doing. If you have helped even one person know that they aren’t alone with these struggles or raised the profile of this issue even a little bit than you should be proud #thetruthabout

    Reply
  7. Sam

    Hi Louise – as others have said being a parent blogger at all is fraught with fears of over-sharing and criticism and what the kids might think later on down the line but I think that if, like you, you write informatively and with love about your children and your situation then why should those issues ever come up? People online can be very judgemental and self righteous and take things out of context but only we know if what we are saying feels right for us and our families. I think others have definitely benefitted from your experiences and probably vice versa. Thanks so much for joining me today on #thetruthabout Xx

    Reply
    1. Louise Post author

      Thank you Sam – it’s definitely a balance isn’t it over what we share – but so true that our stories help others. Lovely to link up to #thetruthabout again – thank you for hosting x

      Reply

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