Share? Don’t share? Over share?

I’ve wondered for a long time how much I should share about our life with Louisa. It’s something that my conscience battles with. In general (as many of you know!) I’m a classic over sharer in real life (especially when there is wine involved!) but the internet is a different thing. I’ve always liked posting ‘pretty’ photos but recently I’ve been a bit more honest with some of the things affecting our lives. And I’m not sure if I should be.

So let’s explore my social media posting history…..

When I had Fred I was a serial ‘baby spammer’ (which basically meant I uploaded lots of photos of him, all the time, to my – most likely! – uninterested 26 year old friends!). There were lots of Instagram and Facebook updates of milestones he’d reached, him at the park, trying his first Ella’s Kitchen carrot puff, a few photos of grumpy faces that I thought were funny etc. – very light stuff with very little substance – but a classic case of a proud new mum wanting to show off her cute baby.

When I had Louisa, I started out that way again.

However, I became increasingly uncomfortable with sharing ‘pretty’ photos of her when behind the camera everything was a bit scary. The truth was, I was extremely worried about my baby. I started writing a few longer, probably a bit criptic in hindsight, posts every now and then saying that she was having a bit of a tough time but she was so lovely. I remember posting a photo of her at five months next to a ‘I rolled over for the first time’ baby milestone card. It stung as I posted it as I was already aware that it was a massive fluke and deep down I knew that something was going on. But I shared it nonetheless because I had trained myself to think I needed to. I’d posted milestones with Fred so I felt I should with his new sister.

By nine months I had a photo of Louisa next to an ‘I sat for the first time’ card. I wrote a caption saying that I knew ‘she’ll hit every milestone in her own time’ – when the truth was she could only sit by me wedging her into place and two months earlier her paediatrician had told me he thought she most likely had a severe disability. I didn’t know if what I was writing was the truth, would she ever do things even in her own time? Why was I lying and making out that everything was ok? I think I gave up on the milestone cards after that. For the record, we haven’t yet been able to use the ‘I said mama/ dada for the first time’ card or the ‘I slept through the night for the first time’ (sigh!) card either. Those cards mean nothing to me now, but they were so important when I had Fred and he was hitting them all at the ‘right’ time. I wanted to do the same for Louisa but ultimately I was living a different experience. It took me a while to realise that.

In the past I haven’t liked to post when Louisa has been in hospital. I pick and choose what I want to share about appointments and visits – which weirdly bothers me sometimes because I want people to know how much she goes through, yet also don’t. I’ve always found it a bit uncomfortable when someone posts a photo of their child in A&E or really poorly in hospital. There have been many times we’ve been in hospital in the past where I’ve been too worried and stressed to get my camera out and snap away – I’m not saying that is wrong when people do that, we all deal with things differently, but personally for me it doesn’t feel natural and I often find myself embarrassed in front of the nurses! Because of this we don’t have much photographic ‘evidence’ of Louisa’s hospital visits and the photos we do have I rarely post online. But yet, I did share a photo of Louisa in intensive care four months after she had been discharged as a ‘then to now’ photo on my Instagram account once. I wasn’t sure at the time, and I’m still not sure now, how I feel about those photos. But for some reason I felt compelled to have a picture to symbolise one of the scariest times in our lives. And in a weird way I needed others to see what she’d been through too. But maybe that should have remained private.

Then I decided to write a blog. This blog is proving to be really cathartic for me. It feels good to express some of the thoughts and feelings I’ve had throughout my experience so far. It feels good to have people tell me they like reading what I have to say. But in turn, I have got mixed feelings about how much or how little I want to share. I wonder about the longevity of it as Louisa grows and how truthful I am being because obviously it is not ‘pretty’ or ‘inspirational’ all the time.

But people who read these blogs are often my friends, or people I have met in the past. There’s a connection to most people who read these posts – let’s be truthful I’m not becoming an international blogging sensation here! So it doesn’t feel so wrong to share my feelings with you. But still, my words are out there on the big bad internet and could be stumbled across by anyone.

Then I started an Instagram account to go with this blog and it has confused me even more with what I think is ok and not ok to share. There are more people I don’t know personally following me on there. Yet, on the other hand, they are mostly people in very similar situations to us – so it feels like we are slowly building our own community of online friends through common experiences. And I can only really build on those connections if I’m open about our life.

One of my main concerns though is that I wonder if I’m sharing more of Louisa because she is disabled. If she was a typically developing child would I be engaging in so much online content? Is the balance between what I share about Fred the same as what I share about Louisa? Obviously it is not, I share much more of Louisa, but do I share less of Fred because he is ‘typical’? What about their privacy as human beings – am I respecting his privacy more than hers? I worry about the safety aspect of the fact that I am sharing Louisa’s name and disabilities on the internet. These are all things I consider. My children’s safety is paramount.

So my question is; How much is too much sharing?

In my first ever blog post I wrote about wanting to protect Louisa’s privacy. And I will always endeavour to maintain a line. I don’t want to share things that are not mine to share. I have to somehow find a perspective that works – maybe less about her and more about me?

However, I feel like there is a much bigger picture here…..

If I hide things away surely that is making it harder for children like Louisa? If disabled people continue to live their lives as secrets behind closed doors then understanding and change will never fully happen? Ultimately, you cannot learn about something if you don’t know it needs to be learnt about. I feel that by demonstrating the level of support needed to help my daughter thrive like other children is fundamental in getting people to understand and want to support the thousands of adults and children who need this help.

But I am not disabled. I can’t and don’t speak for disabled people. I can only speak for myself and only partly for my daughter. It’s important to always note that I am blogging about Louisa’s disability through my eyes, not hers.

And what I’ve found since I started writing my blog is a lot more understanding and interaction from friends and family. People have started to try to understand the difficult parts of our life whilst also celebrating with us the happy and amazing parts. In turn, I hope that Louisa isn’t so confusing to them anymore. I do think people who read my posts are starting to build an idea of what she goes through daily just to achieve regular things. And I think, perhaps in the past, they were a bit too uncomfortable to ask. Now I feel like I have opened the conversation and people want to learn. And I hope that certain behaviours don’t seem as scary to people anymore when they not only see it in my Louisa, but also when they see it in other children in their communities who may be similar to my daughter.

I also feel incredibly responsible to show the world that having a disabled child is NOT the worst thing that could ever happen to you. I think so many people have beautiful notions of having healthy and ‘typical’ children and there is the idea that anything other than that would be awful. But I do not see that as the whole truth anymore. For me it is a tricky one because I don’t want people to think I’m saying everyone is missing out if they don’t have a child like Louisa, of course I’m not saying that. But the facts are around 6% of children in the UK have a disability, so this is likely to affect someone you know in your lifetime. And, if you are one of those people who has a child with a disability, I don’t want you to ever feel alone or afraid. Or like your life is going to be horrible. I don’t want you to feel like I did at the beginning. And with a bit more openness and normalising of this life could it prevent people feeling as isolated as I felt? I’d like to think so.

So what do I think? I think there needs to be more information and experiences out there in the world that normalise disability. To show the world that it’s ok. I think that the unease around disability is based on a culture of ableism in the world in which we live. Ableism means that people misunderstand and fear disability because it is portrayed as something bad and difficult. There are not many positive representations of disabled people in the media. Think about how many disabled people you see on TV. Not many. Why is this? If more people speak out and show the truth about a life that includes disability then I do believe that may pave a way forward for better inclusion.

So although I’m unsure how well I am portraying this life of ours on the internet, I am confident that none of the happy photos I post on social media are fake – any more. We are a genuinely happy and ‘normal’ family – disability and all. It took me time to realise that that was possible. I guess this is because before I had a child with a disability I never knew that we could live such a happy life even with all the heavy stuff. I’m sad that I didn’t have a representation of my family anywhere else that could have given me that hope. And sure, our life isn’t as simple and as pretty as I had envisioned, but I’m sure that’s the same for most people! And none of that is due to Louisa. In fact, she is the heart and soul of our family and the piece that makes it as lovely as it is. And even when some days are a real struggle, when I’m pulling my hair out with worry and grief, we still always find the love. And I love celebrating that with everyone more than ever.

So my point is – the world needs to know about Louisa and people like her. And for me – this will always be a bit of trial and error for how much I share to enable that to happen. I don’t know what I’m ok with yet and I think this blogging and sharing journey will evolve as I – over time – find what I am comfortable with and what I think is best for Louisa. I need to be open and honest to educate, but I also need to protect my daughter.

I want to help shape the world for my daughter, I want the world to start to accommodate her needs, but I also don’t want to be in the situation where nothing is private or sacred. She has her own rights as a human being and I need to respect them. I need to find a happy place somewhere in between her privacy but also where I can successfully advocate for her. So bare with me as I work out where I’m going with this!

So, let’s get the discussion going – How do you feel about sharing your family life on the internet? Are there things that you would never share? Do you find my blog posts helpful if you have, or do not have, a disabled child? Have you changed what you share on social media as your children have grown? Do you find it helpful when other people openly talk about things that you are going through?

Let me know your thoughts, I’m really interested to hear different perspectives as I navigate my way through this new territory.

And in the meantime, here’s my latest favourite ‘pretty’ photo of Louisa and her daddy!