Things people have said to me about Lani and her Downs Syndrome.

Things people have said to me about Lani and her Downs Syndrome.

“Has Lani got a cold”...Lanis got little floppy tubes in the back of her noise / throat I guess from her low muscle tone and she constantly sounds like she has got a blocked up snotty noise but most of the time she hasn’t its just her noise from the DS. I don’t even notice it anymore until a few weeks ago when she had a stinker of a cold and her noise blocked up. The first night I had a very disturbed night as I kept on waking up panicking because I could not hear her breathing!!!!! So now I am grateful for the noise as I always know Lani is breathing ok.  

“Has your daughter recovered from her Downs syndrome yet?” Really!!!!! I was gobsmacked and explained that Lani will always have DS and there were a few choice words involved!! Now I am glad he said this as it reminds me that some people just have no clue what DS is about, he didn’t mean to be horrid or upset me so I think I need to learn to keep my mouth in order.

“Its not right that people like her are born”!!! Pardon I said shocked, the reply was “well who would want to look at that all day?” it took every bone in my body to walk away from this person and not deck him. That hurt so bad I stayed in and cried for two days, my little girl did have a right to be born she is wonderful and will make a great contribution to this world and as for not wanting to look at her all day, well sometimes I don’t want to go to bed at night so I can spend more time gazing at her because to me she is the most wonderful and perfect beautiful little human that has ever lived. It has been suggested to me that rather than getting sad or angry I should try and educate people like him but I am not interested in helping him to understand DS or my little girl, all of my energy goes into my girl, my hubby and our home and I would not even try to help this uneducated rude nothing of a person. Luckily this is the only time someone has been so unkind and for me the way I handle it in my head is I think how many people daily tell me they think she is lovely so he is in the minority. 

 

Blog diary

8th October 2012

The Weekend

All of your lovely wishes for Lani getting better came true and she perked up Saturday and was back to herself by Sunday which helped to make our weekend even better. I cant thank you all enough for taking time out to see if she was ok last week, for me it was worrying but the love shown was amazing xx 

Morning

Today Lani had to model for the camera..She had a photo shoot done in the town near us, it was wonderful, we got there early and make it on time!!!! Miracle lol. Her photographer works with Lani so well, he has got to know her and can capture that cheeky little smile but he also takes pictures that speak a thousand words through her eyes, he is amazing. It took nearly two hours and hundreds of shots later and we nipped into Tesco for a few bits. 

Afternoon

This afternoon I am working from home so Lani will get attention from me but I have to earn a living so she is going to have to play on her own nicely !!! likely hood – Zero lol I will just have to multi task to perfection, likely hood – Zero !!! my work will just have to come 2^nd best.  Before tea time Lani and I have done some physio and some learning though play which both went well. Today I have been teaching Lani to take toys out of a bucket and put them back in so lots of praise verbally and via makaton. Also today I have been trying to teach Lani to blow and suck a straw just like someone suggested to me on the blog.... it was messy but fun.

Evening 

Lani is so cosmopolitan with her eating tonight for tea we had  couscous, and last night she had pasta with pesto sauce oooohhhhhh lala.  More physio, supported kneeling tonight only problem is that Lani just wants to stand up so I am not sure if I should be trying to keep it to kneeling or helping her to stand???? Usual bedtime routine but a lot earlier as Lani kept on falling asleep.  

Q – I read a column written by a mum who had a disable child. She said she hated anyone looking at her child or letting their children look- she said she felt that people were looking because her child looks different and it made her feel awful and could ruin her day! Is this just one mum or do you feel like this?

A  – Great question xx thank you. I am sure some mums feel like this but not me. So many people look at Lani and tell me she is beautiful / has lovely eyes and so on ..... so for me when people look at Lani I feel chuffed as I think she may well have just brightened up there day like she does mine when I look at her. Maybe this is just one of the ways Lani contributes happiness to the world.