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Don't pity me because my child has Down syndrome
Jules' story

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#51 bronzzeAngel

Posted 14 May 2011 - 05:11 PM

Oh how I smiled,reading your story,  knowing the "sorry your child has down syndrome", as told to me by the medical professionals, and then so called comforting words of "but they are so loving."

The words "sorry" and "but" should not be used as i look back myself two years ago. The sorrow I felt at the time as I grieved, was so very short, as I was verbally slapped by one who said .."well did you do the tests? Well if you had you could of DONE something about it."

IT.. IT.. this is my son my baby the one I had kick me from inside for months and squirm, the one who nuzzled into me when placed on my chest.. he is no IT, and I wont take that from anyone!!

That day I no longer grieved at the child I thought I lost, I love the one I wanted, my son, my beautiful son, who had me as his avocate, standing up for him when others wouldnt. I was and will continue to do my utmost for him.

Now we had some troubles getting things right. It took 4 months before he actually breastfed, but once we started he continued until 20 months of age. he has no health issues to concern myself with and he laughs cries, sings songs, claps his hands and when I tell him off and to leave something alone, he smiles cheekily to me and touches it again until I get up and move it away from him. He yells at me and carries onlike any two year old not getting their way and he will smack at me if he doesnt like what I am doing.

At one stage with his hair natually spiked, we would get many people coming up and admiring him, so he now expects people to talk to him. His smile is so very warming but if he doesnt like you, you have no hope.

I am now pregnant again, and I have had the whole "are you not worried...??" NO I am not worried as having this boy has changed my life for the better and if this is as hard as it gets, I am not going to be in the least bit worried.

Edited by bronzzeAngel, 14 May 2011 - 05:13 PM.

#52 bronzzeAngel

Posted 14 May 2011 - 07:55 PM

QUOTE (anniesmum @ 14/05/2011, 01:07 AM) <{POST_SNAPBACK}>
My DH & I recently returned from a trip to Italy (not Holland, although that too would be worth visiting).

Whilst in Venice, at the top of St Marks Basillica, there was another Australian family with 4 girls, one of which had DS.  I did not have pity but absolute awe at the how organised this family was.  Far more organised than us & they had 4 gorgeous girls in tow.

Life is there to be lived.  Jules363, you are an inspiration.


I had to laugh at this ...

Welcome to Holland...lol

#53 GIO

Posted 29 May 2011 - 03:28 PM

You are an amazing woman Jules.

Your positivity is just so admirable.

Best wishes to you and the girls.

#54 Cyndi40

Posted 11 June 2011 - 06:38 PM

You are a remarkable woman Jules,.. All children whether they have DS or not are beautiful in every way... We as adults learn alot from kids with DS... All children can teach adults alot and especially acceptance of others... xxxx Very best with ur new addition... xxx biggrin.gif

#55 ciara092

Posted 16 June 2011 - 10:20 PM

Waoow you are one strong woman and your positivity is something to be admired!!! wishing you all good health and all the best for you and your daughter..!!  biggrin.gif biggrin.gif happy.gif

#56 ciara092

Posted 16 June 2011 - 10:21 PM

And yes without a doubt your daughter is very beautiful !!

#57 annamosas

Posted 16 June 2011 - 10:36 PM

I get it Jules I truly do. I too have a beautiful daughter. She has Rett Syndrome. I am truly blessed to have her in my life. I hate the pity and I hate the stares but I have to remember they don't know how lucky I am. If only they knew how lovely and loving my beauty is then they might want her for themselves!

#58 baileysmummy73

Posted 14 December 2012 - 09:47 PM

A beautiful story..I grew up with a great aunt who had Down syndrome and we never thought of her as different..I basically knew her more in her adulthood she passed away when she was 68 in 2009..I remember her laugh the most and her warm cuddles..enjoy all those special moments with your beautiful daughter and your other children..your an amazing mum xx

#59 baddmammajamma

Posted 14 December 2012 - 09:56 PM

I'm glad to see that someone bumped this piece!

#60 colpheepip

Posted 09 January 2013 - 07:48 AM

Love your story Jules and everyone's stories who have walked similar paths.
And the beautiful comments melt my heart  happy.gif
I have 4 children and my youngest daughter is 13 months old and has Trisomy 18 or Edwards Syndrome but in the mosaic form where not all of her cells carry the extra 18th Chromosome. So I guess apart from still being small you wouldn't realise she has a chromosome disorder. She is perfect and beautiful and she is our sunshine on a rainy day in our family xxx

#61 melanieb530

Posted 13 March 2013 - 03:45 AM

Lovely to read a good news story about a child with Edwards syndrome!

#62 baddmammajamma

Posted 17 March 2013 - 05:46 PM

Bumping just because...

#63 Gumbette

Posted 18 March 2014 - 07:40 AM

I'm sorry to hear about your cancer battle.  Your story brought tears to my eyes, not just because I also have a DD with SN and leaving her behind would be my greatest fear, but because all children deserve to have their mums watch them grow up.  You are a beautiful gutsy woman, and your family are lucky to have you.

Good luck Julia, my thoughts and prayers are with you.

Edited by TiredbutHappy, 18 March 2014 - 07:42 AM.

#64 WinterIsComing

Posted 19 March 2014 - 07:48 PM

I've also come to say that I read about your battle with cancer. I am sending all my positive thoughts and prayers, stay strong.

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