I am often criticised for how much time I spend on Social Media, Facebook mainly. It’s like it should be something to be embarrassed or ashamed of, and I really ought to “get out more” or “get back to work” because apparently I have “too much time on [my] hands”. But as I sit here in the second hour of my daughter’s three hour nap, with an empty laundry basket and a clean and tidy house, I can’t help but ask the question, “What else should I be doing?” Today I’m completely stumped. I am slowly developing cabin fever after four days at home with two unwell children (one went back to school today, but the other is on house arrest on account of some currently unconfirmed, but most likely contagious spots), and I have literally lost any motivation to get up off my backside and do something other than play 10:10 on my iPhone whilst watching Loose Women. So I spend a large chunk of the day, whilst my little one is sleeping, with my phone in my hand and my butt firmly planted on the sofa, and that’s when I start to yearn for company and I’ll take whatever kind I can get, even the virtual kind.
You see, I’m a really sociable person. I thrive in the company of other people (yes, the real-life human kind) and I LOVE to talk. I have never been that good in my own company; I could never do a sponsored silence. I’m one of those people who finds it difficult to stay quiet in situations when you really should. I just about managed it in the Sistine Chapel (well, let’s face it, you’ve got to have some respect in there), but put me in a quiet place for too long and you’ll find me starting to fidget. I’ve been known to giggle at a funeral (don’t judge me – it’s nerves, not disrespect).
So what does someone like me do when I’ve got something to say, but there’s no-one here to listen? Simple. I tell the virtual world through Social Media.
Take yesterday for example. My daughter had her phone confiscated at school and I received a call to tell me that it is the school’s policy for an adult to collect it. I’ll not bore you with all the details, but let’s just say that the ridiculous policy really annoyed me – partly because I was home with two poorly children, partly because it meant my daughter would have to come home from school with no means of contacting me if she was unsafe. I was spitting feathers over the stupidity of the policy and needed to let it out. Alas, there was no-one to let it out to, but if I didn’t get the chance to vent I would literally drive myself crazy with anger all day long. When you let stuff like that out, you get the chance to have your feelings validated by others who share your views. You also get the opportunity to hear opposing views which provide some balance to your own take on the situation and help to calm things down. So, in the absence of real-life human friends (not generally, just this week while we are on house arrest, lol!) I took to Facebook. I immediately felt better after spilling out my rather long rant about the situation, and when the comments started to come in support of my rant, I felt better still. So where’s the harm in that? Or would it be preferable that this SAHM just kept her thoughts and feelings to herself in the silence of her own company until eventually drowning in a pit of misery….?
I also share a lot of pictures
Yes, I do. And I’m sorry if you get bored of seeing pictures of my little girl clogging up your Facebook feed. I don’t get the chance to share my little girl with many people (see above, on mostly being holed up indoors as she sleeps the day away) and Social Media is my way of sharing her with the world. And when I say ‘world’ I really mean it, because through our experiences with a rare childhood disease diagnosed last year, my daughter has connected us to people from across the globe. Sharing her pictures has helped us to raise awareness of the disease, educate and support parents going through the same struggle, and inspire huge amounts of money for research, and because of that I will never be ashamed. I have shared everything from shocking photographs of my daughter when she was sick (not for sympathy or self-gratification, but to show people just how awful the disease can be for a child) to beautifully filtered shots of her sniffing a daisy. Those pictures show how far she has come, and I am grateful to have her here with us every day. So whether it be Facebook, Instagram or Twitter, I am going to keep on sharing the photos that make me cry and those that make me smile. I make no apology for not featuring as many pictures of the other two kids – it isn’t because I love them any less, it’s just that they’re at school all day and when they are around there is very little time for taking pictures! Warning: you are likely to see as many pictures of the puppy as you do of my little one.
I go through periods of celebrity-hounding
I am not ashamed to admit it! If you follow @freya_story at all you will see that I go through phases of hammering different celebrities with requests to share my tweets aimed at broadening awareness of Kawasaki Disease. I’ve had some success – Anthony Minghella, Miriam Stoppard, David Bull, Fay Ripley, Chloe Sims – but not even a fraction of the success I hope for. I am targeted in my approach, choosing to follow people with medical links or with children of their own and might therefore empathise with our situation enough to share. It’s not about the personal pat on the back, feeling like you have somehow connected with fame, it’s about audience reach. If I could stand on a mountain with a megaphone to ensure that everyone in the world had heard of the disease, I would. I don’t want another child to suffer because of ignorance.
I spend a lot of time in Facebook Group discussions
I follow a lot of Facebook groups connected with Freya’s illness. Through those groups I have learned a lot, gained a lot of support, and been in a position to provide information and support to other parents in our position. I have developed relationships with people with a common interest, who truly understand the pain my family has felt in the last year. I have built a strong network of support for my daughter – support that has helped me through the experience. It is a good feeling knowing that there are so many people that care about her and are interested in her journey.
There was a time when I was active in all the groups pretty much 24/7. It was a blessing and a curse. My FB newsfeed was constantly streaming with stories about a new diagnosis or a new fear. For a little while, when I was receiving counselling, I came away from all the groups. Not because I didn’t care, but because I needed to focus on getting stronger which was difficult when I was constantly surrounded by sadness. Now I am following those groups again (I never left them, just reduced their appearance in my feed) I feel more able to provide support where I think it is helpful. I no longer feel the need to put my twopenneth into every post, choosing rather to scan the comments to make sure the questions or concerns have been answered. If someone else has shared my thoughts, then that’s good enough for me.
I know that my involvement in these groups has helped people, and as long as I can be useful I will continue to be involved. The balance that I have now is much more healthy, although clearly this week I have had a lot more time on my hands for such pursuits!
I get a lot of messages
Because I reached out to share Freya’s Story, we have become connected to the world of Kawasaki Disease. I have received messages from many people across the world, from Hong Kong to Spain, Australia, the US and Pakistan. Mainly mothers who have wanted to share their experiences, send good wishes for Freya, or who just need someone who understands to listen to their fears. I am one of those people who believes that whilst I have the ability to help, I have the will. I could not turn my back on someone who could benefit from talking to me, no matter how little I might help in the scheme of things. And I’ve already told you, I LOVE to talk, so I guess it’s a win-win!
I don’t write so much these days, and I’m still working out what it is that I want to do with that going forward. My blog began as Bluemama – somewhere to share honest, candid experiences about motherhood. With Freya becoming sick shortly after she was born, the blog very soon became focussed on her. If you have followed Freya’s Story you will know that it started with a journal that I kept during the 6 weeks that she spent in hospital in the Summer of 2015, and I have continued to post updates, share information and occasionally blog about our experiences with the disease. Blogs relating to Kawasaki Disease are always tagged as Freya’s Story and are shared on the FS Facebook page (www.facebook.com/freyasstory) and/or Twitter (@freya_story). Mostly everything else is shared on the Bluemama page, which is the least active of the accounts. Random stuff, like when I get the urge to write a poem, just stays on here.
I love writing – it’s another way for me to get all the thoughts and feelings out of my head. It’s great when someone shares a post, or is touched enough by it to make a comment, but mostly it just feels good to get it out.
And that’s about it. Yes, I do spend a lot of time looking at my phone; enough to worry sometimes about how much damage that might be doing to my brain! But it’s rarely in some idle pursuit (with the exception of sleepless nights when I get a bit obsessed with 10:10!) When the baby’s spots have all cleared up, no doubt I will make it back out into the outside world. But while she is sleeping from 11am until 2pm every day, and the washing and ironing is all done, and I’m sitting in a clean and tidy house (and even if none of that were true) I am going to wholeheartedly and unapologetically embrace my virtual friends 🙂