downs syndrome - a positive angle

[laurajo24]

so its taken me a while to decide where to post this and just how to say it all. think its about time i took the plunge now... i don't want to scare or upset anyone by posting this. just hoping to raise some awareness.

there have been a lot of posts about tests for downs syndrome and other genetic syndromes on BnB and i have to say, i've been pleasantly suprised by most peoples positivity surrounding the subject.

I am step mum to a lovely 3 year old girl who has downs syndrome. she is my little ray of sunshine. no matter how crap i am feeling, she always makes me smile. she cannot walk yet and she only says a few words but all she needs to do is smile and my heart melts. she has just learnt to say my name and she is saying it over and over again. its is the sweetest thing! everyone who meets her instantly falls in love with her and she changes everyones opinion of downs syndrome. she starts nursery in september and me, her dad and her mum couldn't be more proud.
yes, she is developmentally behind for her age but we have no doubt that she will reach all of her milestones. these milestones might be a little different to children who don't face challenges like her but they are just as important.

of course, i did not carry her for 9 months and was not there to be told she had downs and so i will never fully understand how her mum and dad felt. i know they grieved for the little girl they thought they were having but now they wouldn't change her for the world. shes is amazing.

there is a stigma attached to downs syndrome and by posting this, i hope to highlight that it doesn't mean the end of the world. i know some ladies out there are getting high risk on their tests for downs and i know it must be devastating. it doesn't mean the child will have downs, but if they do there are positive stories out there.

i really hope i haven't offended anyone by posting this. pregnancy is a time for excitement and i don't want to spoil this for anyone. i just feel that downs deserves some positive press!

check out the downs syndrome association website for lots of really good info

again, sorry if i have upset anyone

 

[polaris]

Thanks for sharing your story and your thoughts. I have worked with children with Downs and while I know obviously it is different if it is your own child, I would agree that it isn't the end of the world at all. If I had a Downs baby I would be more worried about the physical health problems that can go along with it such as heart problems. Congrats on your pregnancy too, you're going to be a great mum!

 

[Wombat]

I am always amazed (in a good way) and in absolute awe for those mums and ladies who bring up or work with children with downs syndrom. Or any other disability really. I think they are so brave and so positive! And I don't think there are many human beings like them...


So big and lots of
https://i215.photobucket.com/albums/cc183/wombat57/flowers.jpg

 

[hivechild]

Thank you so much for sharing this.

My DH and I had a big long talk while we were waiting for the results from our 12 week testing to come back and we both realized that the only reason either of us would want to know for certain was so that we could be better prepared to face the challenges. There's nothing we wouldn't do for our baby, no matter what.

 

[bloodbinds]

Thank you for this! My brother has downs and is 24, and he is lovely!! The most wonderful brother anyone could ever ask for and everyone loves him! He was best man at his friends wedding last month and did wonderfully and the whole family were so proud of him! xx

 

[~KACI~]

Nice to the positives

 

[ChubbyBunny]

So glad you posted this! I feel the same way. We decided against the test for downs as we would love our baby just the same either way. He/she will still be just perfect to us.

 

[Nic1107]

Thank you for this post! Down Syndrome can be a devastating diagnosis because of the health issues associated with the syndrome, but children with Down's have so much to offer the world and can bring so much joy and light into their families. My little niece had Down Syndrome and she was absolutely adorable. The doctors pronounced her as very high-functioning, and indeed she was. She was already starting to potty train at 2 years old! She was starting to talk, she played like any other child, she loved to dance and had attitude to spare Sadly we lost her to complications of leukemia treatment earlier this month (I'm sorry to scare anyone further, but it's just the truth), but she left such an impression on every who ever knew her that she still casts her light over our entire family.


https://c1.ac-images.myspacecdn.com/images02/84/l_8da755ebc4a447c094c338867a3f2b00.jpg

 

[angela43]

what a wonderful post -- thank you for sharing. She sounds very special, and so do you. She is lucky to have you in her life.

 

[soootired]

Hi, i dont know that much about down syndrome, the health problems assosiated with it and the extra care needed. All i know is that the small number of children and adults that i have met with down syndrome seem to be the nicest and happiest people i know. Great thread

 

[Lazy Leo]

Its so nice to see a positive downs thread. Like chubbybunny we decided against the test, feeling that it would not affect the way we feel about our baby, but that it would possibly affect us through the pregnancy causing extra worry etc about how we would cope. Ultimately whatever happens we would cope.

You sound like a lovely upbeat, positive woman. I hope you enjoy the rest of your pregnancy and I'm sure your step-daughter will be an amazing big sister

 

[Szaffi]

Thanks for starting this thread. We got a high risk bloods result, turned down amnio, so are a bit worried about it. I turned down amnio, because we have decided to deal with whatever we are given and not to risk MC for no good reason, but I worry a lot that should our baby have the condition, she'll be excluded and ridiculed even if she'll have no health problems (none were detected at scans, etc for us) and that I will not be able to cope or protect her.

It is very reassuring to hear about people's personal experience (I don't personally know anybody who has DS)

 

[sw2129]

Thanks for the great post, we have been told we have 1-100 chance that our son will be born with downs due to some problems detected but we also decided not to have the test, MC or termination is not an option for us we will love him no matter what and we know that we have great family and friends and assotiations out there that will help us!
We understand that it may be hard at times but as you say people with downs are so nice!!
Congrats on your pregnancy you sound like a great mum already

 

[ds.mama]

This is a wonderful thread. I have a daughter with Down syndrome. During my pregnancy I was so afraid but when she was born there was nothing but love. She has been a great joy to me everyday of her life.

 

[mamato2more]

I have never heard a parent of a Down's baby/child( or any child with a disability) say anything different other than they are such a blessing, how life is so wonderful with them, that they are so thankful that they have them..Never anything but positives. So, thank you..

 

[sobersadie]

My big sister has Downs syndrome and has lived a 'normal' full and happy life. She went to a school for children with additional support needs where she won e medal as dux of the school. She went to college for 3 years and has had a few part time jobs. When she was little it did take her a bit longer to learn things than other chidlren her age but she is a whizz with her mobile phone, can cook, has her own bank account and can use a computer. her social life is fuller than mine!! She was born with a hole in her heart that was repaired and she does have a weight problem (which is common with children and adults with downs as they have poor muscle tone) but apart from that is as healthy as anyone else. She has loads of friends and is happy (can be a crabbit bugger at times too like the rest of us) and likes to be independant and voice her own opinion. Im on baby3 and have never had any of the tests as there is no way i cud get rid of the baby if it came back as having downs syndrome. So we decided we take what we get and there are far worse things than downs syndrome. xx

 

[Lullaby2010]

Such a great thread!! I know people of varying ages with Downs due to my career as a community carer which spanned 14 years before I developed epilepsy. I have always found all of them to be wonderfully bright and friendly. Lovely individuals with great enthusiasm for life.

I wasn't asked whether or not I wanted the initial nuchal screening and blood test as they do it automatically here, but h2b and I both said no matter what, we will love our baby completely, whetever challenges come our way.

The screening came back low risk, but my family history of epilepsy still leaves the chance of our daughter developing a neurological disorder such as epilepsy etc. Again, whatever happens, she's our little girl, and we love her no matter what

 

[maybebaby3]

i am a teacher and have worked with special needs kids, including downs syndrome kids. you are right they are so loving and cheerful and really are a ray of sunshine.

 

[dizzy77]

1've never been on this forum before, but after reading about the girl on gmtv with her gorgeous baby i thought i'd join. my beautiful baby girl was born in june 08 and was diagnosed with downs syndrome shortly after birth. we had been prepared as they had picked up on some problems at her 20 week scan.
Thank-you for highlighting how our children are the most adorable babies, who are not to be scared of. yes it can seem daunting at the start( i admit i was terrified) but i soon learnt that there is nothing to be scared of. My daughter will be two in june and is using various words and signs, her most popular word at the minute being "hide" normally when she has been up to something and is able to tell us when she needs her potty. She is my world and has everyone wrapped around her little finger.
Everyone prays that there baby will be pe rfect, and believe me when you see your baby, the love you feel cannot be described. thank-you again for the lovely report and to anyone who has worries, yes babies with down syndrome will cause you worries and you will face challenges, but what parent doesn't xx

 

[Moomad]

Someone posted this birth story on the forum a while ago and it's been so inspiring. My baby is low risk, but I know if it's born with downs then I'll love it just the same

Here's the link to the birth story- it may make you cry!

https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html