THE BLOG
24/10/2013 07:35 BST | Updated 23/01/2014 18:58 GMT

Ticking Hands of Time and 'Up Down Boy' by Sue Shields

I have been conscious of time and how quickly it passes for a long time now, a very long time, in fact. As a small girl of about 8 years old, a friend of my Grandfather told me how precious being young is and to savour every second. As a result of this comment, I can remember vividly standing in my parent's garden, strewn with autumn leaves, on a Sunday afternoon and really soaking up what I was doing and thinking to myself "one day I will be old and I will remember this". Which is exactly what I am and do do on a regular basis!

The passing of time has been further magnified with the arrival of my baby Polly. It seems to be whizzing by at a rate of knots. It seems only yesterday I was waddling to the school gates heavily pregnant, huffing and puffing, wondering if we would cope, and now she is suddenly almost 4 months old, gurgling and wriggling, and I cant imagine our family unit without her now.

Just about everyone says the first year of a baby's life goes in an instant, but I didn't find this with Seb, my first baby. Every day felt like a month, with all the pressures of being a new parent, the foggy blur of sleepless nights and the repetitive daily routine. That first year felt more like five. Added to this the diagnosis of Down's and every spare second that Seb was asleep I would be have my nose buried in a book or on the internet and the hours he was awake I was relentlessly encouraging him to roll over, to move, to be stimulated (I still recall my mum telling me to give him a break at about a week old when he fell asleep on his all singing all dancing activity playmat!).

But each milestone seemed to take forever, and I had the luxury, with him being my first, that I could sit and wait for things to happen, whatever the timescale. When Dominic arrived, he seemed to do things so much quicker and with both boys at home it was inevitable that time would pass quicker too. With Polly (bless her heart) she has had to fit in to a daily schedule of school and pre-school drop offs and she spends most of her life in and out of slings, pushchairs, bouncy chairs and car seats and I barely have a moment to even notice what she is up to. Only yesterday, I left her on her change mat and returned to find her confused and half way across the bathroom floor. I missed her first 'roll'.

Of course, we are all guilty too of wishing time away - looking forward to key dates, nights out, birthdays, Christmas and then in the blink of an eye another year (or 20) has gone. Turning 40 has made me aware of my own mortality, something that scares me, I cannot imagine the tragedy of not seeing your children grow up, and I also find it really hard to comprehend that I have been on this earth for that long. Such a milestone birthday amongst my peers has inevitably brought with it photos from a bygone era too. A stark reminder of how far we have come without really realising. How can the 1990's now be over 20 years ago?

On top of this, I attended a meeting at the Special School that Seb used to attend and quite possibly will do in the future. It was to discuss ways of raising money for their ground breaking café enterprise which will provide invaluable employment and life skills opportunities for current and ex pupils, with learning difficulties. I am so excited about the project as the City of Bath is seriously lacking in anything close to this and the building itself is architecturally stunning and so a café would be a great venture. Going back to the place where Seb first started his 'formal' education at the nursery at 9 months old really shook me and brought a lump to my throat. That little boy now in his second year at school and his mum no longer the frightened rabbit she once was.

All of these thoughts running through my head, I have been taking time to try and enjoy my brood as they are. I have had several moments recently when I have wished I could freeze time, right now, keep us all as we are. I look at the boys sleeping soundly and my whole being could burst with pride and protection and wanting the moment to last forever.

So, unbeknown to me until last night, it was very timely that I should go and see the play Up Down Boy, written by Sue Shields at The Tobacco Factory in Bristol. Sue wrote the play about her son Nathan and Nathan acted his own part in the play (although his character was renamed Matty)

A rare trip out, especially on a school night, with treasured friends, all of which to some degree have been on a similar journey. All of us have 3 kids and our paths have crossed purely because each of us has one child with Down's syndrome, making our bond quite unique and special.

We journeyed into Bristol, I always feel a small sense of excitement venturing out of cuddly, cosy Bath to the more urban streets of our neighbouring city. We briefly caught up with each other and then took our seats.

The minute the play started and I set eyes on the main character Matty, I felt a lump in my throat. I have no idea why, but I did. Pride I guess and maybe just an ounce of motherly protectiveness and connection coupled with the vulnerability I see within big, trusting almond shaped eyes. The play was instantly engaging, the theatre was very small and intimate. Within minutes we were laughing at the wit of the writing. The play is focused around Matty's mum as she packs her son's things for Residential College. I had a thought to myself that I was going to be ok, but then it happened. My bottom lip wobbled and my eyes started to leak as Matty's mum recounted the day he was born and her experience in the hospital. She recalled how she had counted his fingers and toes. This is something I did too, with Seb. Something was nagging me about him but I couldn't work out what, and so I counted his toes. Seems ridiculous now.

The beautifully tender and loving relationship between the mother and son unfolds as she shares her frustrations at his constant need to "clown around" and her stress becomes apparent at the thought of "letting him go".

And then it happened. I lost it. Couldn't control it one bit. Floods of tears, happy and sad, as Matty and Odette stood on stage signing softly to each other in silence (it is even setting me off again now thinking about it). It was a relief to hear sniffles in 3D stereo from behind and to the right of me. I was conscious too that in such a small venue, Nathan, who was playing the role of Matty, could most probably see and hear these cries.

The show finished and after a thoughtful and reflective moment of silence, the applause started...............and continued and continued and continued. Nobody wanted to stop clapping.

This play was quite simply incredible. The acting, the story and the connection to our lives made it both exhilarating and exhausting. There is no getting away from it, whilst our children are undoubtedly individuals with their own personalities shaped from their own experiences, certain basic characteristics that form the foundation blocks of their beings, means we all united by the same fears, worries and joys that our children with Down's syndrome bring us. That much was evident by how much each of us enjoyed and related to the script.

After the show, we were lucky enough to meet the actors and the writer, Sue Shields, which made the whole experience even more intimate and personal. We all chatted 19 to the dozen about our own children, our own journeys and our own experiences. It was the cheapest and most effective therapy any of us could have wished for at £11 per ticket!

I am still thinking of the play and it's characters today. It has made me stop and think about the ticking hands of time. I realise that actually it would be dull if we didn't evolve. If Polly remained the baby she is today, we would not ever get to see her real personality or potential (and the explosive nappies may get a little boring). We wouldn't know what Dominic's strengths and weaknesses will be and how he gets on at school. We wouldn't have the opportunity to see what direction Seb's life takes him in. It is the same for all of our children. There is just a natural paternal instinct to want to cling hold of our children with Down's syndrome just that little bit tighter.

Whilst I sometimes wish time would allow me to get off the roundabout and take stock, I am excited by our future together and what it holds for us.

Please, if you can, go and see this play.

http://myrtletheatrecompany.co.uk/updown.html