right - dd2 and 3 having a sleep - some time to post.
As someone else said - we basically knew antenatally that dd1 would have down syndrome. We also knew this was our babe and she would be born - we would deal with the rest when the time came iyswim.
We learnt at 20 weeks antenatally that she had a heart defect that was very very common to children with down syndrome. We were in fact told that it would be very very rare for her to be born with the heart defect and without ds.
Knowing beforehand and making the decision to have dd1 does not mean there were no tears, grief etc. We had her down syndrome confirmed in a very poor way - dragged into a corridor in SCBU where dd1 was in intensive care, a registrar shoved a piece of paper under my nose, tapped it, nodded at me and then shut the folder again. Dh could not see a thing.
I can tell you - I wept - like I had never wept before - even antenatally I was not upset as I was at this point in time. However it could have also been the day 3 or 4 hormonal crash that comes post birth. I wept for my babe who would face a world that would never see her as 'perfect' although to us she was perfect, I wept for the imagined slights and hurts she would suffer, I wept thinking I would never be a good enough mum for this wee thing. I thought I was too selfish, impatient, weak and would expect more than she was able to give.
Boy was I wrong - but enough about me. She has overcome things that just amaze me. At 8 weeks old and just 8lbs she had two open heart surgeries a couple of days apart. She fought back from a rocky recovery and to look at her now, unless you see the scar you would not know.
She is gradually reaching her milestones - she seems to take a little while but each new skill grasped/learnt is another cause for celebration just as it is for her two sisters.
At 5, here in Australia she attends a mainstream kindergarten and is off to mainstream school next year. She also attends a special needs unit and that will be part time next year transitioning to full time mainstream. She attends swimming lessons which she adores - she is my water baby.
She is mastering the flying fox at the local park, as well as climbing like a monkey with no fear whilst I sit with my heart in my mouth - learning to sit back and give her space. She was almost 3 when she learnt to walk now - she runs - anywhere and everywhere I always joked she was my olympian swimmer, I am revising that dream to her being my olympian sprinter!!!
She is the funniest thing - she has a wicked sense of humour and a laugh that comes from her boots - she wishes no ill towards others despite it being displayed to her. She relishes seeing other people - outings are to her adventures to meet other people and learn about them.
We have met so many amazing people because of dd1 and the fact that she has down syndrome. We have had amazing experiences - both trying and elating.
She is an important part of our family - her two younger sisters adore her. To dd2 - all she wants to be when she is bigger - is dd1. Dd2 does not see anything wrong with the fact that she is toilet trained and we are still working on it with dd1, she does not see that dd1 is not as verbal as she is - to her dd1 is her partner in crime, her mate, her darlin ( as she sometimes calls her). Dd1 in turn adores her two sisters. Earlier in the year we had a babe and dd1 was beside herself - she did nothing but talk about the babe at sn and mainstream kindy and to anyone that even looked sideways at dd3 in public.
As to how you cope - one foot in front of the other, one day to the next - I work on the stage I am at and then we work on our progression. For me that is how I 'cope' but to be honest yes there are some issues but as a babe - she was much easier than dd2 in terms of day to day care. Even now she is less demanding in a lot of ways than dd2. I know some parents cope by looking long term and getting that sorted BUT that is not me. I work on the here and now. I get through today and then work on tomorrow.
As I said in my earlier post - this sadness is normal - BUT that subsides and the love for and bond you have with this babe will take over - you will be besotted as we all are with our babes.
I knew when dd1 was born my life would never be the same - and you know what - I was right - I feel so blessed to have my three beautiful girls and the privilege to be dd1's mother - even when she is stomping her foot and telling she does not want to clean her teeth .
You will dream new dreams and very shortly you will reach a point where you cannot imagine life without your dd.