So long since my last blog post but I felt the need to say goodbye (and good riddance) to 2015, which to quote HRH The Queen has been an 'annus horribilis'!
Don't get me wrong, there have been some positive and lovely moments such as receiving my World Down Syndrome Day award and whilst not being able to collect in person, having the lovely Emmanuel Bishop do it for me.
And being presented with a beautiful glass bowl by Down's Heart Group to mark 25 years of working for them in voluntary and paid positions.
But overall it's been a rubbish year both personally and for our global Down's Syndrome community, with far too many of our youngsters being seriously ill and some of them eventually gaining their angel wings. It's thankfully been a good number of years since I can recall there being such a bad period of loss, but together with family events this year, it's reminded me how emotionally draining it is to be powerless to help those who are being torn apart inside by worry or grief. It's the one part of my job I don't like.
When I initially volunteered to help Down's Heart Group as I felt that maybe I could use our experiences of having Daniel to help other families and perhaps make their journey a little easier. I was thinking primarily of those with a new diagnosis, but of course it was inevitable that I would at times also be dealing with other bereaved parents and that is a lot tougher. As much as I would do anything to take some of their pain for them and walk part of that journey on their behalf, it is something they have to do for themselves and all anyone else can do is be there for them and let them know we care.
When I initially volunteered to help Down's Heart Group as I felt that maybe I could use our experiences of having Daniel to help other families and perhaps make their journey a little easier. I was thinking primarily of those with a new diagnosis, but of course it was inevitable that I would at times also be dealing with other bereaved parents and that is a lot tougher. As much as I would do anything to take some of their pain for them and walk part of that journey on their behalf, it is something they have to do for themselves and all anyone else can do is be there for them and let them know we care. Thankfully for those with a new diagnosis, whether it's before or after birth, there is more we can do, by providing factual, up to date unbiased information, answer questions and support them in various ways.
Echoing the thoughts of Emily Perle Kingsley, we can help them discover that having a child with Down's Syndrome is like going on a World cruise where the itinerary has changed a little from the one you'd planned. A few places may be missed off and a few unexpectedly added and the order and timeframe may alter, but in general the tour will include everything you expected and were looking forward to. Basically you've been transferred from the ship you bookedm onto a different one that has a slightly changed itinerary, but it's not The Titanic, so it's not a disaster, just a change of plan.
So to all my friends currently on their cruise - enjoy every minute. For those who've sadly returned to shore - savour all those wonderful memories, knowing no matter how short the trip, it was a once in a lifetime experience.
I wish you all a year of peace and hope across the world!
