Wednesday, 4 August 2010

The day after D Day

Well I made it through D day and although there were inevitably a few tears, actually it was the best birthday I've had in the past 20 years, thanks to so many wonderful friends.

So many people took the time to send me Birthday Wishes and messages of support.  My Facebook page was busy all day with posts from friends worldwide, many of whom I only know through online networks, but I felt surrounded by the love and support of so many people, that even without the pink hair it would have been an awesome day. 

I want to say THANK YOU to everyone who has got involved in the Daniel Green Memorial Celebration, whether it be by donating or sharing his story, I hope that the ripple effect will have meant it reached beyond my circle of DS friends and has enlightened others as to the inner beauty of individuals with Down's Syndrome.

If it has changed just one persons thinking then it has been worth it and I cannot ask for a better tribute to my son than that.

I also need to say a special thanks to Beeunique for donating the hair dye and Novel T's for doing a great job on my polo-shirts and with free postage.  

The celebration (and my pink hair) carries on until Daniel's angel anniversary on November 13th when I will no doubt be providing the entertainment at the Down's Heart Group conference.  So it's not too late to make your donation if you haven't had time before, just visit my Everyclick page or send a cheque (payable to Down's Heart Group )to the address on the website.

Tuesday, 3 August 2010

Who am I?

No poetry writing last night which is the usual thing for Daniel's birthday and angel anniversary, but I did spend time thinking about who I am after 50 years of being.

Who am I?

  • I am a wife of nearly 30 years to the wonderful man I've loved since our first kiss
  • I am mum to 4 beautiful children - three whom I've watched grow up into caring individuals who are always ready to speak out for people with learning disabilities and 1 who in 100 days changed my world
  • I am someone who hates all the inequality and hurt in our society who cannot understand how people can bear to deliberately inflict pain on others and often in the name of religion
  • I am someone who wants to change the world, make people realise how blessed their lives are, how rich they are even with no money and how easy it is to share with others even if you think you have nothing, because we all have knowledge and love to give one another
  • I am someone who realises that I am just a minute part in the scheme of things, so I have chosen to try and make a small difference in the lives of people I feel passionately about - people with Down's Syndrome
Today I mark 50 years of being and celebrate the life of my son Daniel who was born 21 years ago on this my birthday.  His short life taught me many lessons: the hardest lesson of all - the loss of your child and the most important lesson, that of unconditional love.  
I can't change the world alone, but if our story has touched your heart in some way, perhaps you can share it with others and in that way what started as a small ripple may grow into a wave and we can all be a part of changing lives for people with Down's Syndrome worldwide.

For all my friends worldwide (most whom I've never met) who have the joy of sharing their lives with someone who has Down's Syndrome, for all my friends with Down's Syndrome who never cease to be a source of inspiration to me and for everyone who works tirelessly to improve the lives of people with Down's Syndrome everywhere.

In light of the events of today, I think I need to add I am the nutcase who just dyed her hair pink to celebrate the life of her son and raise funds for Down's Heart Group!

See more photos on Facebook.
If you'd like to donate you can do it here.

Monday, 2 August 2010

D day is in less than 4 hours

As D day approaches, whether I think of it as D for Daniel or 'dying my hair pink', either way I can't help but think back to this day 21 years ago and reflect on how the events that were to follow over the next 101 days would change my life.

On Wednesday August 2nd 1989, I went to bed, placing the birthday cards that had already arrived on the bedside table ready to open them the next morning whilst cuddled up with my 15 month old son Andrew.  I was 36 weeks pregnant and had no idea that by 8am the next morning our new baby would have entered the world, nor the sudden unexpected impact his birth would have on our family.  
Despite Daniel being face up, my labour lasted less that 5 hours during which I was opening my birthday cards, much to the amusement of the midwife.  Attention quickly turned to me as I had a retained placenta necessitating a trip to the operating room and it was whilst I was anaesthetised and Malcolm had gone home to collect Andrew from our friend, that concerns were raised about Daniel.  So it was 6 hours later before I was awake and Malcolm had come back to the hospital before they could tell us that our baby had Down's Syndrome.  My first proper cuddle was in the Special Care Baby Unit with a drip in my hand and a baby attached to lots of monitors.

Three days later we were having an emergency christening whilst waiting for an ambulance to Great Ormond Street Hospital where Daniel was confirmed as having Hirschsprungs Disease requiring colostomy surgery the next day.  He returned to our local hospital a few weeks later, where our frequent visits meant that we were soon friends with all the staff on the ward and Andrew knew where the toy box was located.  He also knew where Daniel's shawl was kept and would often race down the corridor to Daniel's room and have it out ready for cuddles by the time we got to the door.

At 10 weeks Daniel went back to Great Ormond Street for temporary heart surgery as he was struggling to put on any weight, but when he got there he picked up a bug and they had to delay for a few days, so he finally had surgery on October 10th.  When we saw him afterwards in Intensive Care he was covered in tubes and wires and you couldn't see his face because of the ventilator, but it didn't matter to me as I was so relieved because I had been convinced that he wouldn't come out of surgery.

When he was 12 weeks and 2 days old he finally regained his birth weight which seemed a major turning point and in early November he returned to our local hospital, where we resumed our daily routine of visits.  I finally began to believe that one day, probably months ahead, our little boy would be coming home with us and I guess I let down the protective guard that had been holding me back from bonding fully with my son.
How cruel and ironic then that we should get that dreaded phone call just days later telling us that we needed to go to the hospital and then when we arrived the words I shall never forget telling us that our little boy was gone.  It was the worse thing that I have ever or ever hope to experience.  Suddenly we were faced with organising a funeral for the first time and as things turned out it was to be on the Monday following my nieces Christening, where I was to be a godparent - how much harder could it have been?

Anyway, it's all a long time ago although it's still as fresh in my mind, so I decided that this birthday would be a celebration, both of my 50th and Daniel's 21st with a focus on all the positive things that having Daniel has brought to my life.  And there have been so many - the opportunity to try and help other families, meeting some truly inspiring individuals. making some wonderful friends (both in person, online and by phone), media coverage and  the opportunity to travel to several countries including Singapore, Canada and Nigeria.

It has been a wonderful privilege to be involved in the world of Down's Syndrome and included despite the loss of my son and I want to thank all those families who have allowed me to share in their lives in so many differetn ways.  Reaching my half century is a wake up call to get a move on with all the things that I want to do for this special community, I hope that I have the health and strength to contribute a lot more before I'm done! 

As many of my friends will know, I had agreed to dye my hair bright pink  if I could raise £1000 in sponsorship to go to Down's Heart Group.  The way it has worked out I am having it done on my birthday tomorrow and I will keep it that colour for 100 days to mark the time that Daniel was here with us. THANK YOU to all the wonderful people who have already put their hands in their pockets to support me, if you would like to add to my total, please visit my fundraising page, Daniel Green Memorial Celebration

As August arrives ...

It's been quite a while since I got chance to blog, partly due to a bout of illness, but mainly due to workload and an increase in the amount of time caring for my mum is requiring daily.   However, as August is such an important month in our family calender I really need to try and get some entries made in the next few weeks.

I was always a big kid as far birthdays went until I had Daniel, but since then not unsurprisingly I've found the day rather difficult to cope with as it brings back such vivid memories.  Over the years this has also had an effect on my wonderful daughter as four years after Daniel was born, she had the bad timing to be born seven weeks early, thus arriving the day before his and my birthday.  That's kind of made it hard to get in the spirit of things for her day even though I try.


So today I would like to just take a few lines to say how lucky I am to have such a wonderful daughter as I'm sure she doesn't realise just how much she means to me.  She's intelligent, caring and an incredible advocate for people with learning disability.  She's also very strong willed and single minded in many things and I guess we are very much alike in many ways, which in itself causes some of the tensions between us, but I suppose that's inevitable.

These are all things that make her the person she is and I am incredibly proud and think the world of her.  It's not that I didn't want my boys, but I did always hope to have a girl and coming along after her three brothers and as somewhat of an accident, she really did make our family complete and I know (although they would be loathe to admit it) that her big brothers Andrew and Michael adore her and I'm sure Daniel would echo that sentiment too. 

August 2nd is your day Sarah Jayne and I want to say Happy 17th, you'll always be my baby girl and I think the world of you.  Happy Birthday!

I should also say a Happy Birthday to niece Julie on the 4th and niece and god-daughter Emma on the 5th (I said August was a big month for our family).  Emma will be 21 this year and that's a little difficult for me too as it reminds me every year of what Daniel should be up to, but she's a great girl and I am honoured to have been the first family member to see and hold her after her mum and dad as she was born in the same hospital as Daniel so I was on hand to get in an early visit.   Happy 21st Emma!