Daniel Green Memorial Celebration

Sorry I've not posted for a few days, been a bit busy with hubby's birthday, bad weather and launching the Daniel Green Memorial Celebration which is my own personal campaign for 2010.

So why now and what's it for?

Well for those who don't already know, back in August 1989 on my 29th Birthday, I received a slightly unexpected present.  My second baby was born a month early complete with an extra chromosome 21, heart and bowel defects (if you want you can read more about it here and here).  Despite the best efforts of the wonderful team at Great Ormond Street, in particular Dr Phil Rees and Prof Martin Elliott, Daniel was only to be with us 14½ short weeks before getting his angel wings never having made it home from hospital.

As you can appreciate, losing a child is never easy, but when you share a birthday every year that day serves to re-inforce your loss.  To be perfectly honest I went from being a big kid who loved her birthday (to give you an idea, my birthday cards were by my bed for the morning and when I went into labour I took them to the hospital and was opening them in between contractions!) to someone who would have preferred to crawl into a hole for the day and ignore it.  However, there were other things that conspired to make that impossible:

1.  My husbands eldest niece was 18 the day after Daniel was born
   
   
2. My husbands sister gave birth to a baby girl 2 days after Daniel was born (already being at the hospital I was the first famiy member after her parents to see her - it was extremely emotional!)
   
   
3. 4 years later, my daughter was born 7 weeks early, arriving the day before my birthday.

So ignoring my birthday has never really worked and over the years I've learnt to cope with it, which meant I was caught completely off guard in 1997 for Daniel's 18th.  As August approached I started looking for a present for my niece, but no matter how hard I tried I just found it too emotional  In the end we gave her an envelope of cash and even then I was in tears as I handed it over trying to apologise and explain that it was because I just couldn't handle it.

Well that experience made me realise that 2010 was going to be a hurdle for me!  As much as I might want to keep it low key, I will be 50 so folks aren't going to let me forget that and to many the significance in relation to Daniel being 21 will not be obvious.  So I decided if I can't run and hide, then I am going to try and make it a celebration of Daniel's short life and the incredible gift that has been to our family - and so the Daniel Green Memorial Celebration was born.

My intention is primarily to raise awareness and secondly some funds for Down's Heart Group by spending time with some of the children and young people in the UK who have Down's Syndrome and heart problems.  I want to see what their lives are like and what it might have been like to share those things with Daniel if he had lived (much like Down's Heart Group patron Sarah Boston did in her book Too Deep for Tears: Eighteen Years After the Death of Will, My Son and in a tv programme Everyman many years ago).  So I am now looking for young people who are willing to share some time at school, at play, at work or anything else they enjoy.

I've already had a great response and it looks as if I will be spending time in various schools and playgroups, at hydrotherapy, working in a cafe staffed by individuals with special needs, enjoying the botanic gardens and feeding the ducks, oh and being put on horseback by a special olympics medal winner!  And on top of that I am hoping to get to meet a load of my online friends and their special kids - it's going to be great fun!

Then to finish it all off, Down's Heart Group are holding their bi-annual conference on November 13th and 14th at Wokefield Park, Reading and the Saturday night dinner and disco will be the finale to the campaign, which is very appropriate as it is the anniversary of Daniel getting his angel wings.  I am hoping that many friends, both old and new, that I have met along this wonderful journey wil be able to join us at the Dinner and make a very special end to this celebration of my sons life.

I'm bound to be posting more on here as plans progress and of course photos from my adventures, but if you would like to know more or to get involved, please do get in touch:

• email me here
  
• contact me via Down's Heart Group's website
• visit the Daniel Green Memorial Celebration on Facebook and request to join

PS.  Apologies to my friends overseas, I know lots of you want to get involved and I'd love to make this a worldwide campaign but I don't have the funds available and I suspect Down's Heart Group wouldn't grant me that much leave!  Instead, how about we plan some kind of worldwide thing to do on August 3rd or November 13th?

On the 12th day of Christmas I'd like to introduce ...

actually now I'd like your help!

Over the past 11 days I have introduced you to a few individuals with Down's Syndrome who in one way or another have been an inspiration to others. 

Some that have achieved great things themselves and some that have inspired others to great things.  

But if we are honest, having a child with special needs can be difficult, frustrating and tiring and that is all that a lot of people on the outside see, so we need to tell them about the other side, the wonderful positive gifts that sharing the life of someone with Down's Syndrome brings you.   

During Daniel's short life I was inevitably so tied up with his medical issues that I didn't get chance to realise that important fact and when he died the grief was too intense to see beyond it for a long while.  I felt terrible guilt - guilt that somehow it was my fault he had these problems, guilt that I hadn't been able to save him and guilt that I had never really accepted him and loved him for who he was because I hadn't really had chance to come to terms with the Down's Syndrome.  

It was some way down the line that I finally realised that it was just the medical problems that had clouded my view.  That a mum who: visits twice a day; takes clean clothes and dresses their baby; puts him in pj's every night and sets his mobile going before leaving; expresses milk for 6 weeks with only a photo and a recording of her baby crying because she's not allowed to feed him direct because he's too weak - that's not a mum who doesn't love her baby!  Somewhere during those 14½ weeks of his life, everything else had stopped mattering, he was my baby and I loved him unconditionally, I'd just been too busy doing it to notice!

 
Only finally then was I able to see clearly what a truly special gift Daniel was in my life and what richness people with Down's Syndrome bring to the world.

I know there are many more individuals, like those I have featured, so now it's time for you to tell me about the person with Down's Syndrome that inspires you the most and why.  Post a comment saying :

• who they are
• how you know them
• how they have inspired you

It doesn't have to be something very public and obvious like those I have focused on, it can be something small and personal such as the effect my son Daniel had on my life.  

   

Who knows, maybe I can feature them on my blog some time in 2010.