Rare and Relatable

I’ve been wanting to change my blog name for a while.

I started this blog in January 2020. We’d moved back to the UK from Canada where Louisa had been born three years previously. I wrote a few posts just describing certain feelings I’d felt over the years.

My plan was to upload new blogs regularly. But life got in the way. Covid happened. Louisa experienced her toughest time and things got pretty dark for her, for me and for our family, Then we got blessed with another baby and Albert came thundering into our lives, bringing with him so much joy and light – but even less spare time. And so, this blog became something I picked up less and less. Hardly at all.

But here I am three years later in February 2023 – wanting to pick it up again. Embracing my own time line and now wanting to share more of our story. And to do it a bit more regularly. Wanting to say the things I’ve held back on in the past for fear that my honesty isn’t inspiring. I realise now that it doesn’t always need to be.

Today, I am able to write from six years of experience – which includes a whole lot of pain, rage, sadness, joy, excitement, friendship, love and wonder.

But one key thing to re starting the blog and saying goodbye to ‘A Special Kind of Normal’ is – the name. There are many reasons why I feel it is time to change it. Fundamentally, I have realised that the disabled community do not like the term ‘special needs’ when referring to disability. I think it’s important for me to listen to that.

But also;

Being ‘normal’ isn’t the goal anymore.

When I created this blog, ‘normal’ was the goal. I yearned for – what I considered – a regular life. For a regular home with my husband and two children, a 9-5 job and maybe two holidays a year. Nothing fancy. But perfect for us.

What I didn’t want was the world that I’d found myself in – the world of an extremely rare genetic mutation resulting in my beautiful daughter being severely disabled. I didn’t want the ignorance, the appointments, the therapies, the constant battle for services, the lack of sleep, the medications, the overloading of information or sometimes the panic and silence of there being no information at all. Ultimately….. I didn’t want the fear. I didn’t want extraordinary. I didn’t want lots of money or lots of materialistic things. I just wanted normal. I yearned for it because the idea of it was so much more appealing than the world of disability I had found myself in. I didn’t want this life.

But it’s funny how life experiences change you.

As time has progressed, I have evolved. I no longer see normality as the goal, I no longer yearn for the life I so desperately grieved for. Normality wasn’t on my cards and I’ve realised that I don’t want it to be anymore. Disability isn’t bad – and what is normal anyway?

Now by no means am I saying that I’m completely happy or satisfied with where I am now. Or that my grief is cured. It will never be fixed. It hits me at the most random moments and the pain hurts now just as much as it did then. But the moments are much fewer and far between. The pain lasts for a shorter period of time. Or maybe I’m just harder to it nowadays. I don’t really know.

Because as long as Louisa struggles I will never find completeness or pure happiness. I know that. If I could change every difficult thing for her, I would in an instant. If I could give her every opportunity she wanted, I would in an instant. I will never stop wishing things were different for her. But, when I started this blog, I truly believed that if Louisa’s disability was taken away then life would be better. In fact, without her disability I truly believed our lives would be perfect. I now realise that her genetic make up is part of her, I only know and love Louisa the way she is – if that was taken away, she’d be gone. And life would be so imperfect and so so dark. It’s not something I can even allow myself to imagine. I don’t want that.

I just want Louisa. She is my wonder. She is my heart. And as much as I know so many people cringe when people say things like this – I truly believe she is the reason I am on this Earth. She is my world. And she teaches me so much every single day.

Louisa has taught me to throw normal in the bin. That we were always destining for something else. Our life is still not extraordinary, it’s still not luxurious or fancy. There’s nothing special about it. But it’s our little niche. It’s our little story. Just like you have your life and your story. But in my life, right now, Louisa is my protagonist. And rare is our journey.

We don’t know what the future holds for Louisa. Rare means there is no crystal ball. Rare means there is so much uncertainty and living with the unknown eats away at me most of the time. Rare takes a lot of inner strength. Rare is not easy.

But we also have relatable moments in this rare life. I’m still a mother, I’m still a wife, a daughter, a sister, a friend. I’m still like you. Louisa is still a beautiful little six year old girl. I hope you can see that from the words I write.

If my words can help anyone going through something similar, then I need to share them. I hope you are able to support me in getting my words out there. Please share and like my posts (if you actually like them!).

And here’s a little message to my darling Louisa. Thank you for helping me find my voice as I’ve searched for yours. You are my wonder. My absolute wonder. I love you. Always have and always will. Thank you for choosing me.

So here is to new beginnings.