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.