Monthly Archives: August 2017

Being Present 

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Source: Being Present 

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Being Present 

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Being Present 

 

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toasting marshmallows with mates

The anniversary of a Duchenne Diagnosis day is often described as the day people felt they started to grieve for a child they lost and with that to say goodbye to dreams they had for their child and the life they thought they would have.

I’ve been there and said things like ‘He’s never going to play international rugby now, he won’t have a girlfriend, a job, get married, he’s not going to do this or will never do that’ Chances are he was never going to play rugby internationally anyway!

But he can still have a job, a relationship, get married and maybe even become a dad.

Last week we celebrated my nephews birthday he’s 2 weeks older than Zak. My earliest memories of my nephew involve cuddling him on my huge, ready to pop, belly and introducing him to his unborn cousin and thinking of all the adventures they would get up to and how close they would be growing up.

This year was one of the hardest birthdays as it was obvious looking at my nephew who all of a sudden has grown, literally, head and shoulders above me and grown into the life of a teenager going out doing his thing, planning for GCSEs and as I silently watched I thought to myself ‘that should be Zak.’

Little did I know 15 years ago how different their lives would be.

Birthdays are often the hardest in the Duchenne community, birthdays, Christmas and diagnosis days. Why is that? Well simply put it is because we don’t know how many more of them we have left.

As our kids get older the deterioration becomes more obvious. Zak will be 15 on Monday he is more than half way through the average life expectancy. There are many things now that the condition has taken from him, things he can no longer do.

However the other day I had a moment, some may call it an epiphany. This led to me making a commitment to myself that this year I am only going to celebrate – celebrate that on 21 August 5:10pm after the most horrendously long and difficult labour my firstborn came into the world and for every day I have him I will celebrate this day.

I know that one day the 21 August is going to be a really, really tough day so why should I make it tough prematurely?

I started then to unpick this theory of throwing away dreams, of comparing lifestyles – of saying things like ‘that should of been Zak’

Zak is Zak, end of. OK so he isn’t planning his GCSEs but he is planning a future , he has not grown head and shoulders above me physically but my goodness he has in his courage, determination and personality.

He asked me the other day if I was still sad because he couldn’t walk anymore , my reply was simply ‘no not really Zak I think I’ve got used to it’ I asked him how he felt and he replied ‘I’m still sad but I will be ok in a few weeks’  he said it so matter of fact.

He makes friends easily and he may not always access that in the same way as others his age but he is popular, he is friendly, and he is kind and isn’t that what we dream of for our kids?

As I started writing this he was down the club house probably talking the hind end off a donkey! He actually didn’t get back in until 2:30am!

I’ve watched him mature over the last year – OK so maybe a little more closely than my sister has with her son but maybe that, for me, is a privilege and not something to bemoan.

I dreamt of having good relationships with all my kids and I have that with Zak we have a great bond and he makes me laugh every day.

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Amazing big brother

He’s an amazing big brother he teaches them naughty words, gives backers on his wheels and will still play minecraft and lego heroes with Sian even though he has moved on to games above her age.

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A rare moment of laughter in the midst of dementia.

He has courage way beyond his years and a sensitivity to situations and people that most kids his age and even some adults probably don’t have. Just the other day I had the privilege of watching him visit his Great Grandma in the home, the smile and cheer he gave not only to her but to the other residents. He really does have the gift of the gab and the ability to make people laugh.

On the flip side he has the most amazing teenage outbursts. His version of stomping up the stairs is slamming his fist on the lift door opener and going up shouting things or muttering to himself! The other week he decided he was so annoyed about something he actually stropped out of the house and went around the block to calm down!

 

Zak’s journey in life has gone down a very different path to the one I imagined when he was safe inside me and the one I imagined before diagnosis day, but this is the journey he was destined for. If I travel that journey with him clothed in grief and sadness I am going to miss out on the beauty that the journey can give me and one day, when the journey ends, I will look back, and regret not being in the moment and not being truly present to make that journey with him.

As I tidy this blog post up and make the final edits I can hear Zak chuckling away to himself, messing around with Itunes and singing away. He is so up for his birthday tomorrow and so excited that it is contagious!

So Happy 15th Birthday Zak and here is to every other happy Birthday that I will be lucky enough to celebrate with you.

I can’t wait to see what the rest of your future holds and the challenges you beat. You’ve got this kid and I am right there with you.

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Mr independent

Disclaimer : it has taken me 13 years to reach this point. It has not been an overnight process and I am not saying it is easy and in no way playing down the difficult journey we make as parents. I may also have a huge wobble tomorrow morning when his birthday actually arrives! However I will hold fast to this commitment to fully celebrate.

We each have to find our own way in our own time. Xxshakespear