Hi MountainGoat.
Congratulations on the birth of your daughter
What a time you've had of it aye, becoming a mum of 2 is a shock to the system anyway and then to find out your DD has Down's syndrome when you had no idea is of course a huge shock. But it is one you'll get over, I promise
I too have a daughter with Down's syndrome and wasn't aware beforehand and am happy to chat to you about my experience and about Charlotte. I'm no expert on having a child with DS you understand, I have no idea at all really, I just know what it's like to be Charlotte's mum!
I had my eldest, Lottie, nearly 6 years ago now. I was 30 when she was born. I had the basic blood tests and was put into the 'low risk' group and I just carried on being pregnant and thought no more other than getting my head round being a mum for the first time etc.
I had a great pregnancy and a really great birth. The second she was passed to me I took one look and almost my very first though was - 'she's got Down's syndrome'. I pushed it away though, too scared to do anything else. But as I breastfed her and the midwife was doing her thing I looked at her eyes, the large space between them, the big deep fold round the back of her neck and it seemed so obvious, so I said it out loud. I didn't think for a second the midwife would agree, or maybe I knew she would, just prayed she'd disagree? But she said 'yes she does doesn't she'
When they bought in a mattress for my DP to sleep on overnight I knew. It wasn't confirmed till the next morning. We were taken into a little side room where I was told to move and sit on the plastic chair, away from my DP, 'just incase I was still bleeding'! Anyway, anyway, it was confirmed and I spent the rest of the day sobbing and drinking tea. All the 'why me' stuff and shock etc gushed out, it was awful.
We realised that we still hadn't told anyone we'd had our baby so started the calls. That was really awful. We were so shocked and upset still. My mum was on her way into work and apparently I said to her that I didn't know if she'd live. She broke down on the traina nd was helped off by a young girl (whom she still keeps in touch with now!) I have no recollection of any of this. I just know that as we worked our way down the list we should change the way we were telling people and approach it from a more positive angle. We were devastated that our big moment, announcing the birth of our first born, something meant to be so special and such a happy moment, was being robbed from us.
Anyway, visitors began to arrive and I took them in to intensive care to see her. They all told me how beautiful she was but I kept my distance. I was terrified and in shock and didn't know what to do but keeping away seemed the best and only thing for me to do. The next day she was taken by ambulance to the Royal Brompton to check for any heart defect. We went by car. 3 of our friends arrived and drove us, I still don't know how they knew to be there!
As I watched her, this teeny tiny naked body in an incubator, wires evrywhere, ambulance men wheeling her along, a crowd of people in white coats, my heart doubled in size and the shock was replaced by an overwhelming urge to protect her. As we were ushered into the room where they looked at her heart all eyes were on the screen as they scanned her. All except mine. I had mine fixed on the man doing the scanning. I though if he sees something bad I'll see it in his eyes first and I'll know. But then he smiled, she was ok, and I realised she may have Down's syndrome but she was healthy and she was mine.
When we got back to the local hospital I held her for the first time since she had been born and realised she's not been fed again by me so asked if it would be ok. I was warned it may be difficult as children with DS can have trouble latching on. No such trouble came and I felt so proud of her and as I sat thee feding her I fell in love and I knew everything would be ok.
And 6 years on it still is.
It's starting to get hard as her difference start to show more that she is in year 1 of a mainstream school. We've also had another 2 girls since Charlotte's birth and I can see how much easier things are. But nothing to do with being a parent is easy and nothing to do with being a parent to a child with special needs feels like too much hard work.
In the early days people kept asking how I was, how was I coping, how was I feeling and so on. I'd reply 'I was ok, I had a beautiful baby girl' but secretly I was waiting to break down, for the sky to fall in and for me to collapse under it. I waited and waited, meanwhile I just got on with being a mum. She was such a good baby, so peaceful, these huge eyes would follow me round the room, she was so alert and then she'd sleep and sleep through the night, oh it was just bliss. This being a mum was esay!! But when was it all going to go wrong? I wish I known it wasn't going to a bit sooner.
I did still grieve for the child I thought I was going to have. The names we had picked out were scrapped, they weren't for this little girl, this little girl with Down's syndrome we weren't expecting, so we started again.
But alongside grieving for the son I thought I'd have I fell more and more in love with my daughter and felt so proud of her. My friends and family were amazing and I felt really loved by everyone and like I was being carried, like if I fell there was a huge safety net waiting to catch me.
Then as weeks went by I found Portage, and the NHS provided me with speech and language, occupational and physiotherapy. I saw these appointments as my version of NCT coffee mornings! I got disability living allowance, and since help with a car, a disabled parking badge, all this wonderful support that i didn't really feel worthy of!
And far from the sky falling in the world became a pretty wonderful, happy place to be, and in the centre of it all was|Lottie, my sunshine.
She's such a charmer, so saucy, so stubborn, strongwilled. I'm blessed, we are all blessed to have her in our lives, her and others like her.
So, that's basically it.
I'm going to go and find you 2 links to things I think you might like to read and meanwhile, I live in Pinner, outside |London,near Harrow so if you are near and ever want to meet I'm happy to. Or you could call or email. And if click on my profile you can see pictures of the little lady in question.
Keep talking. I'll be back to this thread to see if you have any questions or just want tp chat more.
It really is all going to be ok