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.

17 comments

  1. Much aroha and what a beautiful heartfelt post. Desiderata was one of our wedding readings. It’s so wise and pertinent…. even when we don’t quite feel that way. But thank goodness for sunny winter days, good friends and wonderful children. Go Albie! See you guys soon. xxx N

  2. Sarah,
    I can identify with your post and when others only see the recovered child we as parents know there will be more hurdles to face . You will be helping so many other parents by these posts keep it up. On the stutter your dad used to stutter when he was young .I have heard that many times from Aunties, etc over the years so don’t worry it will come right.Love from Janice

    • Thank you Janice. Connecting with other parents is one of the real joys of writing this blog. A heart family in New York is visiting some family in New Zealand and we hope to have them over for lunch. It’s these kinds of connections that really are priceless. I’ll ask Dad about his stutter – one of my other cousins reminded me of this too – so maybe it’s from him! xxx

  3. Oh momma, tell me about it. I have been slow too to realize the impacts, especially when our boy seemingly healed up so well and never looked back. Onwards and upwards my husband’s side of the family is fond of saying. When things pop up, it sends me into a tailspin and the quiet ‘why?’ thoughts creep in, which I hate. There’s no answer for that (the general why my child? question), IMO, and it’s a waste of beautiful time. We have Desiderata hanging in our bedroom. I read it from time to time. Maybe I should read it a little more.
    Sometimes I wish for a crystal ball, though I don’t know if I’d have the nerve to look. Good luck with the appointments. Hoping it’s …..minor?……nothing?…..something to be outgrown? Ultmately hoping it’s just a blip on the radar of a very full, long and beautiful life.

    • Thanks Alyssa – I hope Henry is doing okay now too and best of luck for next Tuesday. I can understand you wanting answers, hopefully there is none to be found! I should get Desiderata back onto my wall – can’t think of a time in my life where it’s been more important! xx

      • Whoops – just read that back and realised it sounds a bit bonkers. I should have written, “I can understand you wanting answers, but hoping there are none to be found in his heart”. xx

  4. Hi Sarah I know I can’t possibly imagine what you three have been thru but it seems to me that it’s pretty human to cope and cope and cope and when there is a wee lull in the stress then you are safe to contemplate a melt down. As for the stutter our eldest daughter Kate had a stutter at about Albie’s age. It came suddenly to a wee girl who had talked early and abundantly and was really marked. I don’t remember how or when it disappeared but it was short lived and all I did was wait . . . And stop well meaning people going ‘now stop and think what you want to say.’ Or ‘relax and try again’. It felt like it should be ignored and that was all we did and it disappeared inside a month or two, never to reappear. So stutters are sometimes dramatic and short lived.

    All our love

    Sue and Colin

    • Oh this is so good to read about Sue – thanks for taking the time to tell us about Kate. I suppose anything that is out of the ordinary with Albie immediately gets put down to his heart or any brain damage he has suffered. It’s really good to hear that, actually, it may just be something a normal articulate two year old can do. I received an email from someone else who read the blog who had a very similar story to yours, so I’m quite hopeful that it is something he will just grow out of now. Hope to see you both soon and thanks so much again, Much love xxx

  5. Sarah – you do write beautifully and I totally get your winter glumness. I feel like that sometimes and I have absolutely nothing to be glum about – 1 lovely husband and 3 beautiful healthy kids. I do try to reflect on these wonders in my life but sometimes… Kia kaha e hoa.
    xxx

  6. Just to add to the info pot – stutters are really common at Albies stage of verbal development ( after/as more complex sentences/paragraphs appear), especially affecting the kids with the quicker brains and more complicated thoughts to impart. 🙂 Its more commonly in the 3yr old+ age group, cause that’s more commonly when sentences/paragraphs get longer 🙂 but Albie has been ahead with speech and so had chance to develop a stutter early too. as Sue said when it’s part of normal development it is best to just give them time to get it out but not pay other special attention to it and like stages of clinginess, etc it passes in its own time – can be up to 6mths. Given his history they will want to check him (again) to ensure that it is just normal and that it does just pass. But I know that these extra appts and with this timing particularly it brings up every alert antenna in your beautiful Mummy brain. We are very much looking forward to seeing you soon to pass on some real life hugs, you are all doing so very very Well and you are allowed, in fact you need, these down days to process the journey that has been.

  7. Hi Sarah, I really admire you that you can share so honestly. It has struck me over the years that feelings over a traumatic situation very inconveniently don’t wrap themselves up in one little bundle with a straightforward pattern that you can work through and it be over. They pop up when you least expect it. I think it is quite normal to be reliving the situation as it was, especially near the anniversary and it must be very hard not to worry for the future. How wonderful that you can share and face your fears with so much support and encouragement from others. Much love and prayers. 🙂

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