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A New Normal

A New Normal

This family I’d dreamed of, what would it be now?

What would happen to our house, our daughter – my marriage?

Would I be able to work?

We, none of us, had signed up for this.

Were we strong enough to do it…Did we really want to do it?

It takes a long time, this journey to, not acceptance exactly, more a reconciliation with yourself.

You have to allow yourself time – time to adjust, time to grieve, time to re-align yourself into this new rather unexpected life.

It does get easier.

I found, at first, I didn’t want to talk about Alex, didn’t want him to define who I am, but who was I kidding?

He is such a part of me, such an influence on the way I am, the way I regard the world, that he needs putting out there every time.

‘My son is disabled’ – I let other people deal with it now, not me.

We have worked our life, woven it differently to accommodate his very different needs, so much so that we don’t even notice it sometimes.

I can no longer look at my life in that ‘Sliding Doors’ fashion – what if?

We are too far in, Alex is who he is and we are who we are.

And this is no bad place to be.

I have more patience now for people, for situations, because I’m aware that what is on the surface is not necessarily all there is.

I wait. See how things develop.

Alex is undiagnosed, which we are comfortable with and don’t think about often.

It’s harder for the outside world, no tick box to place us in.

I – we – are immensely grateful here to our support group – SWAN UK.

Here are the parents of all the undiagnosed children… we fit in.

We talk, we discuss ideas, we encourage those tiny achievements no one else might notice.

But we see, and we celebrate.

Knowing there are other people there in our situation, it’s invaluable, we aren’t alone.

Feeling that you are part of a group, a tribe – it buoys you up.

And with that confidence comes the will to take on the world again.

Slide back – in some way – to that position you never thought you’d reach.

It’s a new normal. But it’s our normal.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

As Alex Grows Up

Meet Our Blogger

This is, primarily, a blog about our little boy, Alex. He has an undiagnosed genetic condition which has resulted in global developmental delay with a visual impairment. In reality what this means is that although he’ll be 4 in July, he’s non-verbal, he learnt to sit up properly only within the last 6 months and is now a whizz at spinning round on his bottom to reach things and grabs at anything in his reach – safe or not… He needs help with every single every day activity and sometimes his hand/ eye co-ordination is off. It’s bang on, however, should you offer him a chocolate biscuit… He’s a mystery, an enigma and utterly utterly gorgeous. He’s also cheeky. And funny. We've started this page for you to keep up to date with him, watch his progress and track our fundraising efforts.

View Helen’s Profile

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