Downs Syndrome Question

[LeBe]

Sorry to post this here dont know if it is what usually is talked about. Ive so=poken to a couple of you before (Thomcat,Evisold) but for everyone else i am 32 weeks pg with a little boy and was given quite a high-risk for DS. I have totally come to terms with this and really believe it will not make a jot of difference in my eyes. However i've been watching Eastenders with the story of Honey and Billy and i know soaps are not the best for actual feelings and situations but watching how they have been worries me that i will be the same if it happens. I just wondered if anyone who has experienced this can say whether this actually a common reaction or not. Sorry for rambling xx

Hi Luggy, nice to 'meet' you

I couldn't agree more with regard to your last point. It's such an importnant point. I correct people each and every time. It's Charlotte, the little girl with Down's syndrome if it has to be anything, never the little Down's girl, I hate that. Person first, not the disability.

It's just about gently educating people.

LeBe, I am writing this, admittedly without reading all of the other messages, for fear I will run out of time and will lose my train of thought.
EE did not portray the experience of my family.
My husband and I have two boys of 23 and 10 months and our little one of 10 months has down syndrome. We had no idea before he was born, I was 28 when he was born and if I am honest didn't consider it likely, though my husband is 9 years older.
I knew the moment that he was handed to me that he had down syndrome and my husband says he knew he didnt look quite like our elder son had done as a new born. I actually said out loud, "oh, he looks a bit like he has down syndrome" and that was that it was out of my mouth before I computed what I was saying. It made the medics jobs a bit easier as we were able to avoid any cloak and dagger stuff!
We just sort of got on with it, which at the time I wondered whether was a form of denial or whether it was because I was so exhausted with the virus I had had for the 2weeks before his birth. His name is James, just as we had decided it would be before he was born.
I knew (my husband didn't!)I was having another boy before he arrived as I had noticed on the final scan!! and so in my minds eye I had a very real feeling /image of my 2 boys, very close in age , playing together etc. And so my response to James having down syndrome is very very much reflected in the 'Welcome to Holland' passage (if you don't know it I will post it again). My feelings of sadness are all tied up with the emotion of grief. There are still days now when I have trouble reading the passage, BUT at no point did I not/do I not love James with all my heart.
Most of the professionals we spoke to assumed we knew because of the matter of fact way we were behaving. Staff were very supportive in an appropriate way as and when necessary.
I full appreciate that EE is a soap opera and needs to write in such a way as to keep viewing figures high but I really am saddened by the way in which at every turn they have opted for a negative rather than a positive response, action, word etc.
James is our baby, our son, it is very much secondary to that that he has down syndrome. Your experience to date may mean that should your child have down syndrome you may have less of a feeling of grief and you may be in a stronger place mentally than those who find out post natally but what ever you find yourself feeling make sure that you talk as freely as you are able to to people about your baby. We made the usual, "the baby has arrived, its a boy" telephone calls in the hour after James birth, and we added on the end something along the lines of, " oh and he has brought a little surprise/secret with him, he has down syndrome". It suited us, felt right for us to be open immediately with our family and friends.
I am sorry this is such a muddled message.
please, please can anyone who wants to know more about the REALITY (not soap land) of being a parent to a young baby with down syndrome who already have a young baby!?! get in contact.
Also I am very sorry if anything I have written upsets anyone in terms of my not agreeing with EE. There are 2 sides to every story I guess.

Hi welsh mummy, your boy sounds lovely. dd3 is now nearly 6 and has downs. I've been watching EE and can't relate to the not bonding thing at all, although I was relieved on Fridays episode that they finally seemed to be focussing on what a beautiful little person they have. (isn't baby actress cute?) I bonded straight away with my girl, as did all family members, but if I'm honest I was sad that she wasn't the sister I was expecting for DD1 and DD2. I needn't have worried, they all love each other now, I love to see them playing together. My elder girls are proud of their "different" sister, and they're friends all love to see her as she is very cuddly and wants to hug them. She is a crazy girl, who I'm afraid was a gay man in a past life, as she loves Graham Norton!! I hope EE, whilst following the serious issues of this long term storyline, reflect the joy of a child like this.

i've just read further down this thread: LeBe, i wish you lots of love and best wishes. Whatever happens with your boy He starts life with a mum who really wants him - what more can he ask for??
Thomcat, your story sounds so similar to mine= how is your girl, what is she up to? She sounds beautiful xx

Thanks Welshmummy for your story as ive said many a time i really appreciate all your views and stories on this, as the birth is getting nearer (7 weeks left) it is playing more and more on my mind i must admit and it really helps to hear from real women who have been through it nd can give me advice and support.

Theheadgirl - Thankyou for your post, you are right no matter what situations arise when lo is here there is no doubt that he is wanted so badly and i think that s going to help in all aspects of being a first time mother just muddling through! xxx

Slightly off-topic but just wanted to say I was at Legoland yesterday and saw two families with sons who have DS. Both boys looked absolutely handsome, had cool haircuts and clothes, were clearly having a great time (and were far better behaved than my boys!). It was lovely to see them as all too often, when I was a child, children with DS were dressed in awful old-fashioned clothes almost identical to what their middle-aged parents were wearing.

hi... i have beautiful (literally!) 12 yearold daughter with DS ... and it was totally out of the blue when she was diagnosed about 30 minutes after she was born... i was only 21.. very low risk, normal AFP test results, great pregnancy, etc//.. .people ask me what those first moments were like when they told me the news and i can say its like this... ALL parents realize at some point in their child's life that they aren't going to be what they imagined they'd be.. whether its at 2, 12, 16, 21, or 30 etc... all parents have a dream and one day have to let it go and just let their child blossom into the amazing human being they were destined to be.... i went through that when my DD was 30 minutes old.. its not so bad.. i took a step back and realized that this little person was going to take me on a magical journey and i had the luxury of having no baggage other than a sincere wish for a happy life... its been a wild ride... and continues to be... yes, i mourned for the lost imagined little girl i had dreamed of for 9mos... the supermodel, the rocket scientist, the prom queen.... but what i still had was this wonderous little person to love... they took her away from me when she was first born and counselled me on "giving her away" etc... and that was the most traumatic of it all... if it happened again, i'd fight like h* to keep her near me at all times... instead of in an incubator which was unneccesary when you consider what we know about kangaroo care etc.... /// wishing you the best.