On the 1st day of Christmas ...

I'm hoping to find time to make a blog post every day of the 12 days of Christmas, primarily about friends with Down's Syndrome, but I'd like to start today with a short blog in honour of my mum.  Right from the time my special boy was born, she accepted him without question and was supportive of my work with Down's Heart Group.  So I think it only fitting that I start with her as she was the primary influence of my formative years and instilled in me the values of acceptance and inclusion that are at the root of everything I do.

A week ago the wonderful lady that brought me into the world had her 88th birthday and today we shared an hour of companionship together at the care home where she has been resident for the last 9 months.  We sat and chatted as she opened the cards and presents that I had taken in for her and whilst it didn't match the level of communication that we shared in the past, I was thankful that today she was at least aware of who I am.  

Mum and I during my visit today

The past 12-18 months have been a difficult journey for me as I've had to come to terms with her diagnosis of dementia and the rapid deterioration she has experienced.  It's been hard to watch someone who was so fiercely independent and capable become totally reliant on assistance from carers and harder still to witness her memory loss which means that much of the time she has no idea who I am.  But, I'm trying to see something positive in all of this and perhaps my experience will in some way help me support families who sadly have to face a diagnosis of Alzheimers in their loved one with Down's Syndrome.

I started out nearly 22 years ago with the idea of using my experience of having Daniel -  getting the diagnosis, going through the bowel and heart surgeries and his death - to try and help other parents in some way, so I'm trying to approach mum's diagnosis in the same way.  Mum's thankfully unaware of her situation which I am so grateful for and from my point of view I'm trying to see what I am learning as something which gives me firsthand knowledge that I can hopefully pass on to others. 

 

To my beautiful boy on your 22nd angel anniversary

A letter to my angel in heaven who shared such a brief time with us and yet made such a huge impact on our whole family.

The t-shirt from my fundraiser in 2010 to mark my 50th and your 21st

Well, as usual at this time of year, I'm having a hard time coping with the poppies that everyone is wearing and at least one stranger has felt the need to point out my lack of respect for not wearing one. 

I'm usually quite happy to talk to anyone about you (even losing you), but this is the one time of year that it's just too hard and I wish people wouldn't be so quick to judge.  I totally respect Remembrance Day and what is stands for, but it's just such a strong part of my memory of the hardest day of my life.  The Royal Albert Hall service was the last thing your dad and I watched on television before going to bed and being woken unexpectedly by that call from the hospital, so even now I can't handle that link -it just brings back that memory so vividly of being told were gone!

So many flowers for such a little person

I was laying in bed last night thinking about you and the fact that I carried you and was your life support for longer than you were actually with us and how so suddenly and unexpectedly you were gone.  I'd known you were poorly but had never really thought that we would lose you and suddenly after 100 days you were gone.  How could I cope with that?  Why had it happened?  What sense did it make?  I went through the motions, largely for your big brother, Andrew, who was after all only 18 months old himself.  He had spent a lot of time those previous weeks visiting you, he knew you belonged to us and idolised 'his baby' and somehow I had to explain your going in a way that he could understand when I couldn't really understand it myself. 
 

You and your big brother Andrew - a rare photo of you awake

I felt so alone and surrounded by people who didn't understand what I was feeling and my lifeline was Down's Heart Group where I found other bereaved parents to talk to, so I guess it was only natural that I should eventually want to try and give something back.  Somehow it seemed to make some kind of sense of your short life to use what I had experienced to try and support other parents going through the same thing and the organisation was an obvious way to do that.

Well that was all many years ago now - I carried out my first official Down's Heart Group task on April 22nd 1990 (I remember the date as it was Andrew's 2nd birthday) and I had no idea back then of the incredible journey I was embarking on.  It has been amazing: I've travelled to different countries, met famous people, been on TV, radio and in the papers, but MOST OF ALL I've met the most amazing people who all share one thing in common, an acceptance, understanding and love of people with Down's Syndrome. 

About 6 hours old - the first time I really got to hold you

And without you Daniel, it would never have happened.  I am so grateful that we had no idea of your problems before you were born because if I am honest, I know there is a chance that had we known, we might have made a choice to end your life in the womb given your medical issues and the potential impact on your big brother.  I'm certain that I would have been convinced that there was no way we would be able to cope with it all, but of course we did because you were our baby, our precious boy and we knew from the start that no matter what we would love you and fight for you as hard as we could.  It's amazing what hidden strength you have when you need it!

Your emergency Christening waiting for the ambulance to Great Ormond Street Hospital

You changed my life Daniel - at first it was hard to cope with the pain of your loss, but now I can look back over the past 22 years and whilst it still hurts to think of you and wonder what you would be like now, I have so many positive memories to counter it with.  Thank you for introducing me to this wonderful community, where I have met so many inspirational people who have enriched my life - you truly were a gift, I cherish my memories of our short time together and I am honoured to be your mum.

 

Dedicated to the boy who started me on this incredible journey, 

to all the wonderful individuals and their families that I have met over the past 22 years, those I've hopefully yet to meet and with special love and hugs to all those whose loved ones have also earned their angel wings.