Down's Syndrome baby

[blackgnat]

4 days ago, my niece gave birth to a baby girl who has Downs Syndrome.

 

I am SOOOOOO distressed about this-to me, this is the death of Hopes and Dreams.

 

I don't know what to say or do.

 

Please help me..

[hers]

How serious is her health?

 

Many people with down syndrome go on to live productive and happy lives.

[rocio]

Don't worry, you will find that this child brings joy to your lives beyond anything you would have ever expected.

[dreamwarrior]

How old is your niece?

[avman]

Things aren't over - just different.

 

Your niece needs your support now. More than ever. She's probably really stressed and hurting. Plus she's got a lot of learning to do about how to raise a child with Downs.

 

The best bet would be to get educated about the problem. Here's a link to the National Down Syndrome Society. I don't know if you are in the US but even if you aren't this should provide a wealth of information for you.

 

link removed

[sharsachan]

i went to school with some kids that had down's syndrome. and while they may not go on to be doctor of the year or something, they will touch the lives of many. people with down syndrome are wonderful people and will teach you to look at the world differently.

 

if i were you, i would tell your neice that her baby is beautiful and was born exactly as she should be. i'm not overly religious but i believe that every thing happens for a reason. you have no idea what that little girl may acomplish in her life or who's life she may touch or change, but i believe she was meant to be exactly as she is.

 

you can still have hope and dreams for the child, you may just need to redirect them to another direction

[1WayTicket2Norway]

Hi blackgnat

 

My brother has down syndrome. I have a lot of personal experience surrounding this, so if you ever want to talk, you can PM me.

 

i also just want to say that it is not the end of the world. my brother has alowed me and my family to see the world through different eyes, he was a blessing rather than a curse. i am grateful everyday that he is a part of my life.

[sarey]

4 days ago, my niece gave birth to a baby girl who has Downs Syndrome.

 

I am SOOOOOO distressed about this-to me, this is the death of Hopes and Dreams.

 

I don't know what to say or do.

 

Please help me..

 

This is not death of hopes and dreams... that's quite insulting to someone who has Downs Syndrome... they are different, but they're still human, they still have feelings, thoughts, emotions, and skills they can pursue in life, and dreams they can achieve, and hope is always there in someones life, it's what keeps many of us going.

 

Your niece will be needing a lot of support, so try and be there for her and put your distress aside when you're with her and being there for her - seeing you distressed won't help her, it'll probably make her feel worse and more hopeless about the situation going on. Try and talk to someone about it though, you'll need your own support too.

 

Think positive.

[hers]

But even if the baby was born healthy and "normal", there's no telling that all of the superficial things between mothers and daughters would happen anyway. This child will still be a child who deserves love and happiness and i'm sure the mother/daughter bond won't be in jeopardy at all.

[TheSmilingTurnip]

Believe me, this baby will be loved beyond measure, but it IS the death of hopes and dreams as far as mother-daughter relationships are concerned. No Brownies, make up , boyfriends...I dont give a rats * * * * if it sounds superficial.

 

I know you're hurting and really worried right now about your niece...

 

...but that's pretty narrow. The mother/daughter relationship is composed of many, many different interactions. There are so many ways for a parent and child to bond...and if this child is not severely Down's, there's absolutely no reason to say that they will not have a mother-daughter relationship.

 

I have a special-needs child. My child has Reactive Attachment Disorder and several other acronym'ed disorders, including some cognitive problems. Not the same, I know. But she and I will not ever bond over brownies, make up, or boyfriends. Once she's in that stage, we will more than likely be fighting because her disorder will be RAGING and so will she.

 

She and I bond over her being herself - messing with her bugs and seeing interesting things. I read her stories at night. I tuck her in just so with her five blankets in the order she dictates LOL. A Down's child would need that even more than my little one does. We laugh together over silliness. I let her be who she's going to be and I don't invest myself too much in the outcome. I do my job. Our relationship is not the one I envisioned in my happy-family-fantasy. But it's very real, and it's as good as it can be.

 

I think you should consider whether you truly have the ability to predict what this future is going to look like. When you think about it rationally and reason it out with someone else, you will see that you cannot predict the future of this child or their relationship.

 

Basically, when life surprises you, you learn to adapt. You get over it, hopefully. The best thing you can do is support your niece. Be a comfort to her, not an alarmist.

 

And remember that it's HER relationship with the child, not yours. Perhaps she isn't going to be into the things that you would be. Perhaps she will have less distress about this child than you. Who knows? But that relationship is going to be what it's going to be no matter what. You are a spectator and you are a supporter. That's what you get to do.

 

Do a good job

[Miss Firecracker]

Very personal.

[sarey]

thanks, guys, for all the wonderful words of support.

 

I have worked with special Ed kids for 11 years. i just spent the last year working with the MOST INCREDIBLE KID ever-a Down's Syndrome boy who is 6. I adore him and he adores me.

 

But at the end of the day, I get to go home and so does he. I love my niece and I can't even imagine how she feels right now.

 

Believe me, this baby will be loved beyond measure, but it IS the death of hopes and dreams as far as mother-daughter relationships are concerned. No Brownies, make up , boyfriends...I dont give a rats * * * * if it sounds superficial.

 

It isn't going to have that happy ending that we thought it would.

 

Life isn't all about happy endings though. And I agree with TheSmilingTurnip,

"The mother/daughter relationship is composed of many, many different interactions. There are so many ways for a parent and child to bond."

It's not all death of hopes and dreams.

[itsallgrand]

It's a possibility that your work in special needs has made this an especially hard blow for you. Because you know the raw work that goes into it, you've seen the good and the bad in 11 years.

 

So, I don't know, but if it were me, I figure there'd be a high likelihood that the two (work related feelings and family feelings) could be mixing up here.

 

This is different though. This is your chance to be Auntie, and an Auntie to this little baby too.

 

I guess I'm saying - you might be careful to make sure to separate the two.

 

Also, it crossed my mind - do you think your niece will expect you to play a special role (working and support role) that she wouldn't expect of any of other family members?

Are you concerned about what expectations she may bring to you?

 

Maybe somewhere inside you are afraid you might lose your own chance to have a 'normal' auntie-baby relationship because of your experience with special needs kids.

[blackgnat]

I live in the USA and everyone else lives in England.

 

There is NO WAY that I would ever be less than a loving Great Auntie. Neither my niece nor her daughter will EVER know that I have these feelings.

 

Thanks miss firecracker for your empathetic post.

 

I grew up with a schizophrenic brother and have a bipolar son. I just wanted ONE family member to have an oasis of "normality" for us all to run to.

[sarey]

No one in this world is normal.

Normal doesn't exist.

Only what society deems as normal.

You mean not mentally/medically ill? Well, it's a shame, but these things happen. You can't change that. All you can do now is focus on what you can do for your niece and her, no doubt, beautiful daughter.

[Miss Firecracker]

Very personal.

[redrose85]

OP- I recommend that you read some of the chapters in the Memory Keepers' Daughter, the ones with Caroline and Phoebe. It may shed a different light on having a family member with Downs Syndrome.

[blackgnat]

Thank you all so much for your very wise and compassionate replies. They are really inspirational. I'm still just hurting right now for my niece and her husband.

 

They have a beautiful little boy aged 3-my niece had several miscarriages before he was born, one of which was a 5 month old girl who had multiple genetic defects and would not have survived outside the womb.

 

When their son was born, normal, after all the trials and agonies, everyone was overjoyed and of course, my niece was so relieved that she was capable of having a normal baby. Naturally, she was eager to try again, though fearful.

 

Now she's going to think that she failed. It'll be a long hard row to hoe.

 

Already, at the age of 2 days, the little darling has had to have an operation to repair a bowel obstruction. It's just hard, hard, hard.

 

But thanks again-I really see some wonderful replies here.