Monday, 23 November 2009

What brought me here?

Back in July 2007 I wrote this piece for an online site and when I decided to start a blog, it seemed an obvious place to start and to be the blog name.

I guess for most people the ‘Meaning of Life’ is all about having enough money to live the life you want: have a nice home; nice car, go on holidays, have kids if you want, go out etc. and basically life is just a continuation of that, constantly striving to maintain and improve on what you have. You may occasionally be touched by outside influences, a major disaster perhaps, but generally life just continues along the same path and you are largely unaffected by things outside your immediate circle. Sometimes though, something major happens in that inner circle that makes you re-evaluate what is important and can have far reaching consequences on your perception of the ‘Meaning of Life’ - for me that something happened in August 1989 following the birth of my second child.

Prior to that I was a wife and mother, striving to get the best for my family, keeping the house clean, looking after our son, making sure he was fit and healthy, had nice clothes and toys. Our second baby was due and I had planned a short stay in hospital for the birth followed by a quick return home where we could continue our idyllic existence as a family of four. It even seemed that it was all going to work out better than planned when I went in to labour a month early in the early hours of my birthday – who could have asked for a better birthday present!

It couldn’t have been further from the truth! By the end of the day we had a baby in Special Care and we had been told that they were sure that he had Down’s Syndrome. The next few days were a blur, lack of sleep, plenty of tears, desperately trying to get my head around the diagnosis and the fact that it could happen to someone who was only 29. Worst of all was learning that like 47% of babies born with Down’s Syndrome, our little boy, Daniel, had congenital heart defects which would require open heart surgery when he was a little older.

The following weeks were like being constantly on a roundabout never able to get off – there was one problem after another with Daniel: he needed surgery for a bowel blockage and ended up with a colostomy; he wasn’t gaining weight so had to be fed by a tube down his nose; he needed oxygen constantly and then he had to have a temporary heart operation to help him grow until they could do the full repair. All this time he was in hospital, either locally or in London and we were travelling back and forth to see him and yet trying to maintain as normal a life as possible for our older one.

Needless to say the ironing and housework suffered badly and I started to fret about that until a friend pointed out that it would all still be there when things settled down and my priority had to be the children. That I think was the beginning of my change in perspective on the ‘Meaning of Life’ and over the next few months it was to change forever.

Suddenly and quite unexpectedly, Daniel lost his battle for life in November 1989 aged fourteen and a half weeks. Despite how ill he had been it was something that I had never contemplated and it was such a devastating occurrence that even now I'm getting emotional as I sit here and write about it. Neither my husband or I had ever had to arrange a funeral before and yet here we were organising that of our baby boy – it completely went against the order of nature.

It was a tough time, friends and family tried to be supportive but unless you have been through a similar experience you really can’t imagine what it’s like. I lost my dad when I was only 14 and as an only child a lot fell to me to support my mum - that was hard but believe me nothing like losing a child. To make things worse my husband and I found that we were coping with the grief differently and in different time frames, which put a strain on our relationship until we were able to recognise and accept that it was normal for that to happen.

Fortunately I had already discovered Down’s Heart Group, a support group for families with members who had heart problems and Down’s Syndrome, and they linked me with some other bereaved parents. Here I found people who could genuinely appreciate what I was going through and talking to them was a great source of comfort in those early months – I guess this was about the time that my final rethink on the ‘Meaning of Life’ took place.

Fitting back into ‘normal’ family life just wasn’t an option, this terrible thing had happened and whilst I couldn’t dwell on it, neither could I just carry on as if it hadn’t occurred, that would have been like denying Daniel’s life and as tough as it was there was no way that I could do that. So a bit of a life change was required! I started worrying less about the house being spotless and spent more quality time with our eldest but I also needed something to keep my mind active. I realised that talking to other parents had helped me so perhaps I could use my experience in some way to help other families – helping Down’s Heart Group seemed an obvious path.

That was over 17 years ago and I am still doing it. Over those years I have met some fantastic and inspiring people with Down’s Syndrome, some truly amazing parents (including one family who have twins with Down’s Syndrome and yet are the most positive people you could meet). I’ve shared highs and lows with families and yes, the loss of one of their children is an emotional reminder that can be hard as it brings back so many memories. Yet as we approach what would have been Daniel’s 18th birthday, I wouldn’t change any of it.

It’s been a tough road to travel and I know there are still hills (if not mountains) ahead to be climbed, not least August 2010 when I hit 50 and Daniel would have been 21, but life now has a new and different meaning and I have Daniel to thank for that. Yes I still work and strive for a comfortable life for my family, but I have a different view on what really matters in life and whilst I can’t change the world on my own, I hope that in a small way I am able to help others whose journey through life may be harder than mine.

So what is the ‘Meaning of Life’? Well I guess for me now it’s about accepting diversity in people, valuing everyone as an individual and trying to help others in any way that I can, which doesn’t have to be huge monetary gestures because small acts of kindness can mean so much more. And I guess most of all it’s about appreciating what I have and the things that I have experienced rather than worrying about things that I’ve missed out on. My initial reaction to Daniel's birth may have been that it was a disaster, now I know that it was a blessing - he made me realise the true 'Meaning of Life'.

Down’s Heart Group is a UK national charity which offer support and information relating to heart problems associated with Down’s Syndrome. Their website is where full contact details can be found.


  1. That was so moving, Penny, and as I sit here cuddling my own Daniel, I'd just like to say how special your Daniel must have been - because look at the positive impact he had on your life and indirectly on every person that you met and have helped as a result of his life. Thank you Penny and Daniel X x X

  2. You have certainly created tremendous meaning from your pain. Our 4th child had Down syndrome. 10 yeats later we adopted a 6 yr old from Korea with Down syndrome and autism.

    They have now both passed away with cancer at ages 15 & 12. It's so hard to not be in the "Down syndrome club" on a daily basis.

    Congratulations on your new blog and the life you have built helping others.

    6 months after Josh was born with Down syndrome, I attended my first parent group. I was touched by the struggle people were having with “why?” I went to bed with a heavy heart and awoke with this story. I hope you enjoy it.


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