For those that follow me on social media will see that this week, I was faced with some criticism for a post I had written. The post was featured on The Mighty a few months ago, and has been shared via some heart/ CHD sites too. The post which you can read here: (https://themighty.com/2016/12/congenital-heart-defect-people-asking-if-child-is-fixed/) was written about when someone asked a simple question about Elijah. Is he fixed? I politely answered, but in hindsight something was bothering me. It was the terminology. It was the realisation that no, my son will never be fixed. So, I did what I do with most things, I wrote to process how I was feeling at the time. It was not a discussion, it was not instruction to all other heart parents on how they should act when someone asks a question. I didn't demand a revolution that we all protest when someone dares ask us a question. It was a post about a mum who was struggling to come to terms with the reality of her son's condition.
The lovely Joe Valente (whom is an excellent advocate for CHD and inspiration to us as a fellow TOF warrior) also posted it on his Facebook a while ago. There were mixed reactions to the post and some accusing me of putting people off asking questions about Elijah's condition. However, after a few comments to say why I wrote what I did, many then acknowledged that these were my thoughts and my feelings. Nothing else. Then like many things at the moment, I had forgotten about the post until this week it was shared by the Adult Congenital Heart Association, and I was very surprised at the reaction.
Now, I am sure you can imagine many that follow the ACHA are heart warriors themselves, heart parents or know someone who has CHD. These are the people I would have thought may have emphasised, with how I was feeling at the time as I am sure they too have felt this. Or at least resonated with some part of it. I have always encountered such amazing support and unity from other heart families. We have laughed together, cried together, followed the highs and lows of our heart journey's together. Perhaps this is why I was most shocked that these were the people who were not criticising the post per se, but me personally. Now, before I go on I will say this is only a very small minority and most of the community gratefully receive my posts and have some lovely comments about them too. I do not do it for the 'fame' shall we say. Or the likes (although just to put it out there this specific post has had 12K so far... just saying) or the comments. I do it because I like to write. I write to process what I am feeling. I still am surprised people do read my posts, as in my head it is only Greg that does still!
I scrolled down the comments to read that I was being dramatic, over sensitive and I came from the generation of the easily offended. Well, if having a child in NICU for 7 days, watching him have heart surgery at 6 months, and suffering from a mental illness as a result makes me dramatic, sensitive and easily offended, well then yes, perhaps I am? And guess what? If that is the case, I am bloody proud to be. I was being accused of again, not educating others about CHD, and putting people off asking questions. Here's the thing, I never told the person in question how I really felt at the time. I answered his question, the post is about how that encounter made me feel. Not about asking questions. Of course, I want people to ask questions about Elijah. I also think across social media and my blog, that I do a pretty good job of raising awareness and educating others of CHD. If you are a follower of mine, let me ask you a question. Had you heard of CHD, or Tetralogy of Fallot before? Did you know how it affects 1 in 100 babies before seeing Elijah's story? Was my post really so detrimental to the future of educating others on CHD? No. It really was not so why was I being judged as a heart mum by fellow heart families? Are we not as the wise High School Musical once sang, 'All in this together'?
Heart conditions and journey's come in many forms.There is no one size fits all approach and even when suffering from the same condition the treatment, journey and outlook can vary dramatically. I have learnt so much from reading others stories, about different conditions, treatments etc. One thing, I have never judged a fellow heart warrior/ parent/ grandparent or publicly told them that what they are feeling is basically wrong. It was only I, who felt that at the time. Even if someone didn't or has not felt the way I did, I do not believe it is right for them to criticise just because they may not have felt like this before. We are all human and how we feel in reaction to something is an individual thing. Not everyone will feel as though I did, that's what makes us different.
Now a days we are quick to judge. Quick to offer an opinion without really thinking before we speak. I wasn't going to post about this, but something was niggling at me for the last couple of days. It isn't just within the heart community, it is other parents, women, men, children all judging one another before taking a step back to try and see their point of view before offering a quick and hurtful comment. Do those heart parents see me as not being good enough because I reacted differently (and more dramatically apparently) than they did? That they felt they needed to make judgement on me as a heart mum rather than the content of my writing. Did they not think to sit back and think about why I it was I felt the way I did? Or just to acknowledge that I did feel like that at the time. Do they remember going through something like this when they had a small child fearing for this future? Did they not think to offer support? Or to advise me? Am I not allowed to be in their gang as I have different feelings? Is there a secret level of being an elite heart family that makes you feel like you are better than others that I do not know about?
Why are we not all supporting one another no matter what our path? As surely we all have a common cause and goal in common? Is this not the case for everything? As mentioned thankfully this is only a very small minority but I wonder if they know they actually it is those sort of comments that are causing more harm than one post about a mum and her thoughts! There was a time these comments would have floored me. I would have stopped the blog, shut up shop and would vow never to write about CHD again. Now, actually I just see it as I got you all talking. That the post now has a bigger reaction and will spread further as you are talking about it. Positive or negative it doesn't matter to me now. I am proud to be who I am and what we have been through. Dramatic flare and all. I will carry on, and I will support others, advise as best I can and spread awareness. I will not change how I write or what I write about because someone thinks I am over sensitive. Everyone has their own opinions, and we should all be encouraged to voice them. However, when an opinion become more of a judgement or personal attack, I do think we need to step back an evaluate a bit.
I only have admiration for my audience, for taking the time to read my blog or my posts. Trying to stand out in the sea of parent blogs now a days is hard, especially when the majority of your content is NICU/ CHD related and this may not appeal to many (thank you to the nearly 70,000 page views of those it does!) and for those who stand to personally attack me, I still admire you too. I feel sad that you feel you have the right to, as are we not actually doing the same thing? To help? To advise? To support? To raise CHD awareness? Are we not on the same team? Do you attack every writer you do not agree with? If they do not act as you did then surely they are wrong? I am not wrong. I am a heart mother, a honest one. Who tries to do her best raising a little warrior to be strong, to be kind and not to judge others. To face the future of check ups, treatments and possible surgeries. If my writing helps just one person, or if no one but Greg reads it then I am happy. Why? I write to process how I feel. I write to potentially help others to raise awareness and paint an honest picture of what it is like to have a child with a life long heart condition. I do not write to please you, I write to please myself. If I do make a difference then I am beyond happy with this,and you cannot take that away. To all the CHD readers thank you, to the non CHD readers thank you equally as there should be no judgement here. Just one Norfolk gal trying to make sense of the sea of crap floating around in her baby addled brain. It is really that simple, no judgement required.