5 Things | You Shouldn't Say To A Heart Mama

Over time, being open about Ivy's heart problems has become easier. It was never a secret and definitely never something I have been ashamed of but each time those words come out of my mouth, it's like a little piece of reality kicking you right where it hurts. By the time I'd given birth to Ivy, I felt confident and comfortable about giving a brief and easily digestible summary of her extensive health history to anyone that asked but sometimes the most difficult part is dealing with the response - the unknown, unpredictability of the human tongue. I know each person's heart has has been in right place but somehow, some of the kindest of words can sometimes make you feel the worst. Here are 5 (actually 6!) times we wish you'd just stuck the kettle on:

1. 'But She Looks So Normal'
'Thank you!', I will always beam proudly, as it's mama's milk that has kept her on that all important 50th centile line, but normal is not a word you can brandish around with these super humans and I always sense a small element of disbelief as to how poorly she actually is. I do feel extremely lucky that Ivy, on the whole, does look like a 'normal' child and much better than either I or any doctor could have ever anticipated but it's a simple case of not judging a book by it's cover as what's happening on the inside, isn't always clearly reflected on the outside. I have spent hours watching and learning the patterns of her blue-ish tinges, where to find them and when. Listen closely to her laboured breathing as she totters across the playground. That aint normal, but you know what? That's ok

2. 'A Friend Of A Friend (etc.) Who Was Born With A Hole In Their Heart and They Are Fine Now'
This one, is my particular bug bear. Approxiamately one in a hundred babies is born with Congenital Heart Disease, ranging from no treatment needed to, very sadly, death. It is true that medicine has come on wonders in the last 20 years and happy ever afters are becoming more common, but if I had been born with Ivy's heart condition, I wouldn't be writing this now. It took me many months of quizzing consultants and extensive internet research to understand Ivy's very complicated heart defects (and I still don't quite understand some of the anatomical bits now!) so I wouldn't expect any one else to. Sometimes I feel like these heart baba's do all get tarnished with the same brush when infact, every single one of them is a completely unique case and have their very own special way of coping. Please don't assume it's 'just a hole'.

3. 'Everything Happens For A Reason' / 'What Will Be Will Be'
I am a firm believer of always looking on the bright side of life but, sometimes, life sucks. and I mean really sucks. Being told your baby has a life threatening condition is one of those times. I can assure you that every parent  that has experienced this has at some point uttered (or in my case, wailed) the words 'Why Me?'. If we'd had the choice, we certainly wouldn't have chosen this but reminding us that the decision was out of our control is unfortunately, not much of a comfort. I didn't want to be 'tested' or given something I am 'tough enough to handle' and I definitely don't want to become a stronger person because of it. Fact is, even if I was some undiscovered serial killer in a past life and I am finally getting my comeuppance now, there was no reason why my child was picked for this.

4. 'I'm Here If You Want To Talk About It'
As Ivy's full-time carer, my life is constant hospital appointments, well planned out playdates and seeking a little adult conversation (usually with our chemist) so when I do get the rare chance to talk to a big grown up person that isn't baby/heart related, I'd just like to be offered wine and shown the latest Youtube phenomenons that have passed me by. The people I do want to talk about it with, would never need to let me know they are there.

5. 'I Don't Know How You Do It'
Just with all parenting skills, there is no manual to get you through this. All I can say is that you truly do not understand the meaning of what Lily Potter did for Harry until you become a mother yourself and the inner strength that enables you to go to ends lengths to care for and protect your little one is just magnified in the times it is needed the most. Ivy is my first, and only, child. I don't know what it is like to care for a healthy baby so when I learnt to parent, I did it in the only way I guessed how, followed my instinct and did everything in my power to do what was best for her. Don't be fooled though, there are many occasions that I am definitely not doing it well but the moment I look at those big brown eyes I am reminded of why it is all so, so worth it.

6. 'I'm So Sorry'
I cannot speak for every mother that has a child with any disability, but if there is one thing I personally don't want it is sympathy. Empathy yes, but others don't need to apologize for what we are going through. I can honestly say I have become a much better person because of it and I  have the best daughter in the world - the strongest, bravest and cleverest little lady who I only have more love for after everything we've been through together. Who needs to be sorry for that?