Red Rocks

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I find myself dissatisfied with just about everything at the moment. The garden’s too wet and dark, the number of good winter jumpers I own is too few, the location of England too far away, Albie has too many colds and the washing on the line is too often tangled.

Laments from a Blessed and Moderately Well-Equipped Life. How very lucky I am to be so glum about so very little.

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But if I am honest, I think the malaise might be due to the year-a-versary of whatever happened last year creeping up on us. I’m a compartmentaliser you see. I’m not sure it’s the best coping method, but it’s the one I’ve got. And boxed up tidily to remember this August 15-19 are those hellish days on ECMO. We should just be able to celebrate one year of his new heart, but with that comes some all too keen memories of the days that followed his repair – of his cardiac arrest, of our terror as we waited four days for his heart, and then his mind, to work again. In those days, I caught the smallest glimpse of the grief that would have washed over us if he had passed on then.

But he didn’t.

And we all too happily walked away from that chasm.  Look at what we love! Look at what we have!  

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It is gratitude that I feel most days. But sometimes – and that’s this time, I don’t. Sometimes I am sad that those days were even part of his story, and it gets even less sweet when I think of Albie having to do it all again. I think of this gorgeous growing boy, who will be a full participant when we do go back next time, who we will somehow have to be ‘prepare’ for what will happen to him (….my baby you will wake up drugged to the eyeballs, with a tube down your throat and your chest stitched red shut, but it’s going to be okay baby, it’s going to be fine….).

However you do that, that is what we will do.

I try my best to not think forward to those inevitable days. But when I do, that’s when my gratitude wanes. Sometimes it gets a bit hard to feel lucky.

I do not want CHD for my son.

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Albie, almost overnight, has developed a stutter – a really rather pronounced stutter. And he is still tiny for his age, so there are renewed whispers as to why that might be. There is a paediatric appointment to be at, an audiology test to be had, a neurological assessment at Starship to attend.

I am loathe to even write all this nit-pick, because it is irrelevant to me really. Albie in himself is ABSOLUTELY and UTTERLY MAGICAL. I have been slow to accept that his CHD will always impact on his life, and on so much more than his heart.

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When I was more outwardly an alt-hippy than I am today, when Nag Champa burned and posters of all sizes plastered my room from roof to floor, I had a dog-eared poster of Desiderata. Many of you will know it well. If you don’t you really should read it – it’s an A3 of wisdom.

There’s a line in it about not comparing yourself to others – that either way you will become vain or bitter. 

Well, today I went and got the bitter. 

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“Normal day, let me be aware of the treasure you are.
Let me learn from you, love you, bless you before you depart.
Let me not pass you by in quest of some rare and perfect tomorrow.
Let me hold you while I may, for it may not always be so.
One day I shall dig my nails into the earth, or bury my face in the pillow,
or stretch myself taut, or raise my hands to the sky
and want, more than all the world, your return.” ― Mary Jean Irion

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Photos taken on a lovely winters day down at Red Rocks.

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