Positivity – we get knocked down but we get up again Downs Syndrome is never going to get us down.

Positivity – we get knocked down but we get up again Downs Syndrome is never going to get us down.

Putting the awful title aside lol it’s a subject we get asked about a lot, how do you stay so positive? What gets you down? Where does your energy come from? How do you cope? Do you have bad days because whenever I see you you’re smiling?

How do you stay so positive? We do have bad days just like everyone does, we cry, our hearts break, we worry, sometimes we I have to go to bed and just hide from the world and sometimes I just can’t be bothered to deal with anyone apart from Lee and Lani. It happens that’s just life. Even in my low moments I feel blessed to have Lani she was very much wanted and planned for, she smiles and lights up any mood I am in.  Having a PMA (positive mental attitude) is hugely important for all of our family’s health, could you imagine if I was bitter about the situation or if I was sad all the time how would that help? I look for the good in every situation no matter how hard it is to find, there has to be a silver lining.

Now I am in a situation of having a child with a disability I am so thankful that Lani has only got DS and as far as I am concerned no major health issues,  so many other people are trying to deal with so much more than I am.

What gets me down? Now this is a hard one, when I stop and think about it a few things can knock me sideways and the biggest one is seeing older people with DS struggling, like on the news last night there was a lady with DS who is having her funding cut and they interviewed her – they asked her now there was no regular help available for her how would she eat and when would she go out? Her answer was that she was not allowed to use the oven or the grill so she plans to eat microwave meals and she didn’t know how she would go out so said she planned on staying in a lot. Boom that hit me like a ton of bricks, I was in tears – is that what Lani has install for her, microwave meals and four walls to look at?? OMG that’s not living, that’s not what any mum and dad want for their child. I can only learn from seeing things like this and plan to help Lani get to a good level of independence where she can cook for herself and she can go out and she does have friends who will help her if Lee and I are gone.  That’s another big one.... When were gone... OMG this worries me, I will happily devote my Life to Lani and be there for her every need till the day I die so now why do I feel panicky that I will die, what if it happens sooner rather than later?? And I am not able to help Lani for as long as may be needed... here’s another one...bullying, I feel like it’s a virtual given that we are going to have to deal with this at some point and how we will cope who knows but I have met some vile people in my life and they have helped me to learn what these people are about and so now I feel thankful for having met them, it was all part of building my experiences to become a better mum for Lani. What if Lani gets ill, I have heard that they are more likely to get cancers – can’t go there – can’t even talk about it.

 I’m human some things just freak me out but Lee is my rock and I often have burst into tears and needed him and every time he has been there for me and I must also say I have been there for him, all the tears aren’t always mine, he is a strong man but when it comes to his kids he is the most loving, trustworthy, devoted, respectful dad and his kids will grow up to feel this in their hearts and know they are lucky just like I am to have him in our lives. So as you see Lee is a huge inspiration to me and he helps to keep my feet grounded and helps me to keep other people’s heads on there shoulders!! When I get cross with people who hinder Lani or indeed just bring unwanted grief to our home he helps me to see reason and deal with them in an appropriate way –bless him xx

Where does my energy come from? All the time Lani is awake I seem to have whatever it takes to crack on but believe me when it comes to bedtime I am always knackered and indeed whenever it comes to anything apart from Lani I don’t have much energy to deal with things, so most people only see me when I’m on it, still it’s all helped me to lose some weight lol by her birthday in a few weeks time I will have lost 3 stone since her birth.

How do you cope? Well I have too, I’m Lanis mum and if I didn’t cope she would suffer so sod that I just crack on and enjoy the challenges, relish the cuddles, dream of her saying “mummy can I come in bed with you for a cuddle” everyone with a bit of gumption copes with what they are given.

Do you ever have bad days because whenever I see you your smiling? I don’t ever have bad days, I have bad moments and sometimes bad hours but never a whole day and to be honest if I am out and about I would never show that I am struggling, stiff upper lip, put on your happy face and smile, the only people that ever need to know I’m struggling is my family and friends and those who I trust. 

Blog diary

22nd October 2012

Morning

Today Lani had her one year check up with the Health Visitor. There is no special DS one its the same for all kids. Can she sit up – yes, can she crawl – yes, can she cruise – getting there, can she pincer grip – no, can she say dada and mumma – half way there with dada (apparently they should say about 6ish words by 18months), weight – on the 50^th so this is all good. Then like usual loads of questions for her.

1)      What is the local school like for being inclusive? Do they use makaton? Have they ever had DS children before??

She rang back later today and told me they do use makaton / they have had DS kids before and we can look at free hours for her from 2yrs old. 

C

a2) Can Lani come off formula milk?

Yes she can go onto full fat milk and water / juice if she has a good diet which Lani does.

3)      Last one which is a bit of a biggie.... we have a concern that Lani may be having infant spasms (child epilepsy) because of the funny little things she has / does. So Lee and I filmed her this weekend, it tends to happen when she is eating or when I am putting her in the car. She becomes vacant, rolls her eyes and pulls funny faces, just for a few seconds and then is back in the room and all is normal again. Children with DS are more prone to epilepsy so we have been quite vigilant on the subject, me = panic lee = see the Doc and see what they say.

Our HV watched the film today and I was hoping she would say all kids do this but she didn’t she said that she thinks we need to see our paediatrician at hospital and to try and call up today and get our appointment brought forward. Our HV says she is displaying some signs but not others so it needs to be checked. So the outcome is that we just don’t know at this point, I have called for our paediatrician but not sure I explained myself properly to her secretary so I will call again tomorrow and fully explain and offer to email over the film.

Afternoon

A huge walk out in this dank weather but it was nice to get some fresh air and peace and quiet, I needed time to think about all of this so time out was just what was required.

Home for coffee and a good old film Butch Cassidy and the Sun Dance Kid.... Love a western.

Evening

Physio with me and a little speech therapy.