Special needs parenting: "The number"

Let's rewind back 7 years just for a moment..

I’m 32 weeks pregnant, my husband and I have spent the last few weeks processing everything we have seen, and heard regarding our unborn baby.

Throughout all the medical terminology I couldn’t even pronounce, let alone understand, it was one Consultant who left a scar in my memory.

This particular consultant told me that IF my son would survive birth, and IF he lived past a few years, he would probably live until he was 7 years old.

I mean how can someone predict this?

Of course, back then I hoovered up every last word they said, I knew I would continue with the pregnancy, and fight for my boy, but these words also crumbled me into the biggest pile of fear I have ever experienced.

Giving a parent a number, in my opinion is the worst thing you can do when talking about their diagnosis.

It creates fear and it can really impact a parent's mental health.

Giving a number can affect really happy times too, it’s like a great big cloud hovers over you, very quickly changing the mood.

I can be smiling and laughing, enjoying a precious moment with my son, then have an overwhelming need to cry, these tears then blur that moment.

It’s like a ‘too good to be true’ moment, you’re scared to be happy.

Special moments such as birthdays. I struggle with them every year, and now dread this upcoming one more than any other.

It's all down to being given the number 7.

I understand some of you reading this may want to tell me it's just a number, and I hear you on this and I completely agree.

Reality is however, when your mental health has been bashed repeatedly for the past 7 years, and your emotions are too complex to understand, you lose all rational thinking, at times, leaving you trapped inside your memory, reliving the conversation that has haunted you for many years.

The impact from a conversation is huge, and I know there are so many other families who were given a number too.

Is it time to change how these conversations are done?

It’s only after many years of battling through as an advocate for my son that I can now see that numbers are just numbers, and there are so many specialists and pieces of equipment that can help a child.

However, back there in that room, scared for my unborn baby, I was fragile, overwhelmed and had no clue at all around disability.

Because of this, I held onto something I could never let go of. It’s tattooed. So, all my rational thinking, experience and knowledge becomes irrelevant when I’m struggling emotionally and mentally.

This is the thing with our mental well health, it doesn’t matter how much we’ve researched, how much hope we have, or even how happy we are, it can be impacted at any time, by anything, from anyone.

It can strike, and bring you so low that nothing anyone can say can bring you back up.

I often describe these times like being on a boat, I have to sail through the motion, and pick myself up when back at shore.

I would love to know how different my emotional and mental wellbeing would be if I wasn't given a number.

It’s impossible now, but is it time to change how diagnosis conversations are led? For me, it’s too late.

However, if I can share just one piece of advice around this, it is to be kind, and true to yourself.

Talk openly about it, as denial or pushing things backwards can be so detrimental to our health.

Be proud of who you are and your family.

Much love,

Rochelle