Friends new Downs baby. Advice please

[SlightlyJaded]

Hello. I am new to the SN boards and am hoping someone can advise me.

One of my best friends gave birth to a beautiful little girl a few days ago, the baby has Downs. My friend and her DH were not expecting this and are both utterly shell shocked.

The DH is being a star. I saw him this morning when he dropped his DS at school and he is being very positive about it - i.e. 'there are far worse things she could have been born with', 'we'll be fine' etc. Perhaps too positive?

But another mutual friend saw my friend yesterday for 5 minutes and said she is in complete shock and distraught.

I have looked at a few Downs websites so that I understand a little of the medical facts but what I want is advice on how to best be her friend. Me and her other friends want to celebrate her daughter's birth - card, present etc, but equally I don't want to gloss over her distress.

I am struggling to find the right words to help her. I know it's not all doom and gloom with Downs but my friend is in shock and having to realign her hopes and dreams for her I guess.

I know the little girl was being tested for heart/bowl defects and I assume the fact that they are home means this was ok? But is that right? I don't like to ask.

So I would really appreciate any advice on how to approach her with warmth and understanding but also joy - she is a beautiful little girl who has been born into a wonderful family and surely that is worth celebrating?

Thanks so much

Thomcat - how lovely to see you on here. You won't know who I am, but I remember you and all your posts about your lovely family.

Hi Littlefish. Have you namechanged,is that why I wopn't know you?
Anyway, hello all over again

No, no namechange, but I'm just not one of the "faces" that you wouldn't know, if you see what I mean. I've been posting for about 6 years now, but am quite quiet in my opinions.

Hi - congratulations to your friend on her new baby

I also have a beautiful dd with down's who wasn't diagnosed until the day after she was born. Agree with what a lot of people are saying, in the early days the shock is too great and the amount of testing they need to do is far too scary to really want to talk about it with anyone.

I was lucky to have an amazing sister, she dropped everything, left her dc with her dh and travelled several hundred miles just came to the hospital so that I could cry, laugh and generally forget for a few hours how horrendous everything seemed to be. Which is basically what I would recommend you do if you can.

1 year on and life is so far removed from what it was during the first few weeks that it seems silly I was so devastated. I've learnt to develop a thick skin, I've deliberately taken dd to all the local groups despite the stares (although at first this was really tough) and I've chosen to openly talk about dd down's with anyone who has questions in the hope that by the time she is old enough to really understand what is going on the novelty of being the only child with SN in the village would have worn off & she'll just be seen as xxx rather than the child with down's.

I've been lucky that I have lots of friends like you who have been there when I needed someone to talk to, to provide moral support for going to new groups and most importantly who treat dd like any other dc.

I'm not going to try and sugarcoat things too much, there will be really low points, even now if someone in the street/shops makes an unkind comment it can absolutely floor me. There is also the ridiculous amount of appointments, the ongoing battle against the ridiculous assumption that you shouldn't expect too much (often from the professionals) and the constant worry about the future, but there are also the incredible highs when your dc achieves things that no-one was expecting them to do yet.

So in short, keep being a real friend to her. Be there to listen when she needs it & to make her laugh when it all seems too much and most importantly treat her and her dd as you would have done before the news.

Just read the comments about 'welcome to holland'

Have to say that really didn't work for me either!

I couldn't work out why the hell the doctor was telling me an annoyingly upbeat story about a holiday (that I would never go on again) whilst desperately trying to detract from the fact she had just announced to me (her group of students & the whole ward during visiting hours) that dd had down's without first checking her notes to see whether the dx had been picked up in the ante-natal screening (which it hadn't)... Have to say not one of the medical teams finest hours & possibly the reason I hate the story so much now!!!

Good morning all and thanks for all the suggestions.

All really good and I hope I haven't offended anyone (else!) with my ignorance.

Slightlyjaded - I think you're being a kind & thoughtful friend and doing what lots of others in your position would do. I've been a member on here since 2003 and despite a huge break I've answered posts like this many times.
It's very easy to know that you you say a baby with Down's syndrome not a down's baby once you've had a child with SN's but it's not always very obvious until someone kindly and hopefully nicely points this out to you.

Indeed Thomcat I used the expresson 'new mum of a downs baby' the first time i posted here. Wouldn't do it now though!

Divent he's only 1 and doesn't really have a protruding tongue at the minute, but we do it anyway!