Golden.

I want to tell you about Nyah Rose. She’s my brother’s little miracle girl – and nine glorious months old now.

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I want to tell you about Richard and Jules too and what incredible parents they are.

And I want to tell you all of this, without taking their story from them – which I think is what has stopped me up to this point. I haven’t want to commandeer what Richard and Jules’ life is, into some tidy, readable blog post of mine. I haven’t felt like this was my tale to tell.

Then, because Nyah is very inspiring and Richard got very inspired, he came up with this crackpot idea of running a half marathon, a full marathon and then an ultra marathon all within four months. He’s doing it to raise as much money as he can to support Nyah.  And he’s writing about it on his new blog, Fat Dad’s Running Club so you can read all about them there.

There is this saying about how the cure for everything is salt water – sweat, tears or the sea – and I see this with Richard’s running. He is not one for great shows of emotion, and the winter has made the sea icy-cold. So he runs.

He’s done the half, and is training for the marathon as we speak. You should pop over and have a look, or even better go donate over here, on this givealittle page.

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Nyah is a beautiful miracle.

Richard and Jules had this really long journey with IVF  – years and years long. We’d speak to them on Skype and witness their moods rise and fall with the hope and despair of each cycle. Such an unforgiving roller coaster. And then – the very last viable egg they had was implanted and this time, wonderfully, the pregnancy continued. About halfway through the pregnancy, doing routine scans, Jules and Richard discovered their little girl would have a heart defect – and in the subsequent weeks,  as they had further anatomy tests, they also found out she would have Down Syndrome too.

We felt their shock and sadness as we talked to them, we felt confused and abjectly hopeless on the other side of the planet, and decided then that it really was time to say goodbye to the UK and come back home.

Nyah has brought so many unexpected gifts with her. So, so many.  She’s an absolute, bonafide delight.  We live about five minutes walk away from each others houses which is crazy cool. I’m pretty tickled about the boys getting to be her big cousins.

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It’s been a process unraveling all the feelings that have gone along with returning home to this wonderful  little one. All the emotions of love and pride in finally seeing Richard and Jules as parents, and meeting their gorgeous girl, got unexpectedly tangled on some rocks – rocks of grief that were very clearly mine.

Rocks that rumble around inside me -mumbling to me about unfairness, and how things like this shouldn’t happen to our family again. Rocks that ache to take away the pain as they prepared for her heart surgery. Rocks, that try as I might to separate their story from mine, found too many things the same. Rocks that wish Mum was still here. Rocks that made it impossible to go to Starship, the childrens’ hospital where Albie had lain four years ago, so we dog-sat instead. Rocks that would cruelly keep taking my mind back to those wards anyway. Those rocks. They just rattled around inside of me – bruising all that love.

And I could carry on with this analogy about rocks and sailing and calm and stormy seas and what not, but essentially, what I want to say is Nyah’s arrival has made me admit to myself how much ballast I still have to let go.

This pile of rocks inside me has got to go. Nyah’s birth has taught me that silenced feelings are not erased ones and that unvoiced pains don’t just tumble away. They sit. And they wait. And as I feel myself ageing, I wonder to myself if my Mum’s cancer was caused by what she had left unsaid – by what sat and waited inside her. I imagine the creep of cancer on all those things left unhealed within and know it’s time. Time to let all that pain go.

So, yeah Nyah’s a bit clever alright. She’s given me some of my biggest life lessons  – and she’s only just begun.

By the by – incredibly, Nyah’s heart defect is not genetically related to Albie’s. Two heart kids in one family with no correlation – go figure those odds eh! About 50% of kids with Down Syndrome will have an associated heart defect, and Nyah is one of those kids. 

 

 

 

 

 

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