Its late but its great.... Has Downs Syndrome changed our hopes and dreams?

Has Downs Syndrome changed our hopes and dreams for Lani???

For me this is a tuff one to talk about, I imagine all mums want there children to do well in life but how is this measured? What is doing well??

Before Lani was born I would imagine myself teaching Lani her alphabet  and numbers, I worried that I would not be good enough at maths to really show her how to do her home work, I mean what are pies all about if they don’t contain apples !!! lol. I hoped that Lani would get a great career and work her way up to eventually take over the world..... I hoped she would marry a lovely worthy man who would take care of her and love her to bits just like my hubby does me..... I hoped she would have kids...... I hoped she would travel and see the sights of the world just like I have, School, College, Uni the sky was the going to be the limits for our princess.

Lani having DS has changed my hopes and dreams but this has been hard to accept, I will teach Lani her alphabet and numbers and I will tell her that Math pies don’t help in the real world so don’t worry about them, I will teach her how to do the weekly shopping and know if the person giving her change is trying to diddle her and I will teach her how to stand up for herself and not take any one giving her grief.   I will show her how to be a nice kind person and how to have friendships that are worthwhile and how to forget the people we all meet along the way who are not worth two bob.  I still hope that Lani will get a job and have the opportunity to better herself in the position if that is what she wants, I do understand though that she won’t rule the world but that’s ok Barack Obama called me last night after his presidential debate and told me the job is pants anyway lol!!! I still hope she will marry a lovely worthy man who will take care of her and love her and spoil her and maybe give her children if that is what Lani wants. I am not sure now about her going off travelling, I think the world can be a dangerous place but we will have to wait and see maybe Lee and I will go with her and we can all see the sights of the world together as a family.

I think l will just have to wait and see what the future holds, all parents dream and often what you thought may be doesn’t seem to happen quite as expected so what will be will be and as long as Lani is happy than I am ok with it. 

Blog diary

17th October 2012

Morning

We were on time again – what is going on it feels great to be in some sort of control again....

So off to special school we went and had a great time again, lots of people turned up today which helps to make the session so much fun, Lani sang songs, saw her friends, played with a tray of jelly (very messy and my OCD was kicking in big time to clean it up but I managed to resist). Lani did some sitting to stand again and had bubbles as a prize for doing it which she loves, and we had good buy songs – such a nice session, it is also really good for me as the other mums there are all lovely and one of the mums who has been going since I started is now a friend which is really nice. 

I am concentrating so hard I think sucking in my cheeks will help ......

Ok I can see the bubbles.. my turn..

I saw the bubble land on the floor so where did it go mummy???

I thought Jelly was just for eating... Playing is fun...

ohhhh this feels funny mummy...

Lani JCing at school like a Boss.

I left early and went off to meet a new friend and her lovely little girl, it was so nice to meet someone in the same boat as me, someone who understands and someone who also has a passion for Makaton and physio. I was only able to stay for an hour but it was such a great time I came away feeling very uplifted and lucky to have met a new friend xx 

Afternoon

This afternoon Lani has been trying out new cups and straws, so out came a waterproof mat and I stripped her down to her nappy and we tried blowing bubbles through a straw and sucking one, Lani did well but I need a shorter one for her so I will see what I can get. Lani’s godmother Vickie brought her a special Pompey mug with handles and we tried that, it was not too bad and I think out of all of them that is the one I will keep on trying her with. 

I also had a call today that has made my blood boil.... our physio (who is lovely) called me and said that the lady who is supposed to be our Occupational Health person had called her and had made it very clear that Lani will not get there support that she requires even though our physio supports our request for the extra support. Lani needs a special chair as she is growing out of her Bumbo fast she also requires a special bench to help her to learn to pull up and cruse, they also should in my eyes come out to our home and assess her extra needs. My daughter is disabled and I feel very strongly she should be given access to equipment that will improve her life and if not than she should at least be given the respect to have someone take time to see her and not make an ill informed decision on her life over the phone. This lady will not have heard the last on this subject, I will be sending her a letter. However on a lighter note our physio has got a new way forward that we can try so we will wait and see. 

Evening

I’m so tired tonight my darling supportive loving hubby is taking care of Lani while I go to bed early #ihavezeroenergy