When my premature twins were born, we were told that twin 2, Harry, had been born with a rare craniofacial condition called Goldenhar syndrome. Before his third birthday he had also been diagnosed with autism. I didn’t want to hear these diagnoses, I didn’t want ‘that’ life. I wanted the normal life I had dreamed of when I was pregnant.
But fourteen years later, here’s what I know as a fact.
There is no such thing as ‘normal’.
Even the families who I watched leave the same hospital as me, the ones I envied and turned away from as they left the maternity ward with full arms and hearts, they are somewhere now living nothing like the lives I imagined they would. Laughing, crying and probably drinking their way through days of fun, adventure and trauma. I spent the first few years of my boys life being angry at the world and torturing myself by thinking of the ‘normal’ things that every other parent in the world was enjoying except for me.
Now don’t get me wrong, we had it harder than most ( and much easier than many). I’m not saying for a minute that I think I was wrong to feel the way I did. It was a natural part of my healing process. I imagine I’d be a text book case in studies of shock and grief. Because that’s what I did. I grieved for the life we would never know. For the things that others took for granted that I would have to wait so much longer for even a glimpse of. Even now there are some things I still wait for and will never know but this life, the one I grew into and the one I love so very much, this is our ‘normal’.
If we were to gather a hundred families together in a room and compare their experiences there would, without doubt, be many similarities but there would also be subtle differences that make us who we are. There is beauty in those differences, our identify lives in the things that no-one else experiences. Even little things like quirky sayings, family jokes, the mannerisms we have, the tolerance levels we strive to reach (and often fail). They all differ and though there will be some shared ground, the fun lies outside of those moments. And while there will be ‘typical’ experiences, they are far from normal.
Ask a group of families about their lives and yes there will be moments of shared experiences. There are thousands of support groups where people gather together to share their journeys and find comfort in knowing they are not alone. These hubs of support are invaluable but the bigger picture outside of those moments will look very different for each person.
Yet we all compare ourselves to snapshots of others lives and try to generalise that way beyond the moment. We think that the things we see in others are reflective of the things we don’t see in their lives. We fantasise that others have it easier, happier, calmer. But in reality, life is as bat shit crazy for them as it is for you and we are all winging it in our own way.
Normal is defined as ‘conforming to a standard; usual, typical or expected‘ and I for one am thrilled not to fit that description. Yes life is hard at times. It’s frustrating and exhausting. It’s complicated and testing but its also surprising and hilarious, heart warming and rewarding in so many incredible ways. No, my life isn’t normal. Its anything BUT normal and I am fine with that.
I wish I could go back in time and tell the woman I was then that normal is a myth. I wish I could reassure her that the life she would make would be as challenging and rewarding as anyone elses. I wish I could give her a big hug and tell her that she was enough as she was and that comparing her life with everyone else’s would rob her of so much peace and joy.
There is no such thing as ‘normal’ – just you and the life you have right now and that, my friend is bloody brilliant.
Chat soon,
Charlie xxx
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