Friday, 26 August 2011

Reflections on the past year

I guess many people find themselves on birthdays, reflecting on the events and changes of the past year, but I have to say it's unusual for me.  Normally I tend to spend August 2nd trying to be positive and upbeat for my daughter and then as night falls it's usual for my mind to turn to 1989 and the events that were to change my life forever.  Maybe this year was different, perhaps because there have been some major changes in my life over the past 12 months or maybe it's because this year my beautiful daughter Sarah turned 18 and the baby of my brood is no longer a child?

The night of her birthday we sat and had a heart to heart and for the first time I discovered that as hard as I've tried over the years not to let it, her birthday has always been overshadowed by her brother's birthday the next day.  At first I was deeply upset to think that I had let that happen, but as we talked I began to realise that perhaps it was inevitable whatever we did as she is a sensitive and passionate young lady who has been brought up around people with Down's Syndrome and has a knowledge and understanding way beyond most of her friends.  I hope that she never experiences the loss of a child, but somehow I feel that if she did she would already be partly prepared to deal with it.  Growing up with the knowledge and loss of her brother and with them having birthdays so close to each other, she has a much greater understanding of that loss than others who have not experienced it.

So back to the past year and the changes, it's been a tough one in many ways with all the issues surrounding my mum, the diagnosis and quick progression of her dementia and all the difficult decisions that required.  Like for so many other people, finances have been a big concern and not only personally but for the Down's Heart Group too, which in itself places additional anxiety on our family.  There have been incidents where I have been verbally abused and my intentions and commitment questioned to the extent that I have considered 'throwing in the towel' and moving on to another job, but then almost like magic someone comes forward that needs help and support, my faith is renewed again by the comments of my friends in our very special global community and I am able to move forward again.

22 years ago at a time when I felt most alone and in despair, I found support from others who had traveled the road before me and even now it is the members of the Down's Syndrome community who lift me up when I am feeling low - our children are truly a unique and wonderful gift and the bond between our global 'family' is a strong and powerful one for which I am forever grateful.  When I volunteered to help Down's Heart Group all those years ago I had no idea of where that would take me, I just felt that if I could use my experience to help one family it would make some sense out of Daniel's short life. 

I hope that I've managed a little more than that over the years, because I know that I have gained so much from my involvement with this community and that I owe so much more to my wonderful friends that make it up.

In Memory of our Son

Many times the hour-glass has turned
Since you left this place.
So many times our hearts have yearned
Once more to see your face.

So brief your visit here below,
A fleeting time on Earth.
Sometimes it’s hard to understand
The reason for your birth.

But we are deeply honoured,
And very, very glad,
That someone up in Heaven
Made us your Mum and Dad.

You taught us many lessons.
Showed us a different way.
You’re always in our thoughts,
Every single day.

Friday, 12 August 2011

My bid to carry the Olympic flame on behalf of the global Down's Syndrome community

Life is so hectic at the minute I'm not sure why I've decided to add to it by trying to do this as well, but it would be an INCREDIBLE HONOUR to represent the global DS community and raise awareness in this way if I were chosen.
Here's the video I made as part of my bid - it's not very good as there was a set format and it was difficult to get photos that would work, but hopefully it gives an idea of the message I'm trying to get across.
If you would like to support my bid, I think you can 'like' it from anywhere in the world (just click the 'like' button under the photo of me with pink hair. To post a comment you have to register either through FB or directly but you can only do it if you are in the UK (although I think a few people have fibbed) - then scroll down below the green box of 'My hopes and dreams" to the yellow/orange box that says "I like Penny's nomination because..." click in there and you have 140 characters to post your comment.

THANK YOU all so much! I'm sure I won't be picked with all the energetic young people that are entered, but perhaps the pink hair will get me noticed and I SO WANT to do this for all my wonderful friends around the world. Perhaps my t-shirt should say "People with DS rock!" or how about "I don't just love some1 with an extra Chromosome - I love them ALL!"

Suggestions will be requested if I am successful.
 Link to my entry