Inspiring people with Disabilities through Awareness, Resources, Empowerment and Unity
"Once you stop listening
to the little voice inside your head,
and remove the fear of
losing your freedom, individuality,
life as you know it, new career as a permanent servant.... you'll be fine."
This is not unique to people who have Down syndrome, and can happen with lots of babies who are sick or have issues.
In my world our family operates like any other family, now, before you go off on a tangent, I am NOT SAYING we are the same. I actually have two children, and my first child was without Down syndrome, so I do know the differences in raising a child with and without Down syndrome.
I also know the difference in having a baby with chronic colic for a year,
and having a baby who sleeps through the night from two weeks old.
And Miss Chloe was not the one with the colic!!!!
For whatever reason, I accepted, in my heart, that Chloe had Down syndrome.
But I have never seen it as a curse for her. I clearly remember one day (one of many in the early days) sobbing my heart out. My doctor was there and I remember saying to him that...
"it wasn't her I felt sorry for, as she is who she is, and that is normal for her, it is me I felt sorry for, as my life would never be the same".
Well, if only I knew...I was right about my life never being the same - it has been AMAZING and is mainly because of
I was also right about her thinking Down syndrome is normal, as it is for her.
I have never hidden the fact she has Down syndrome from her, just as I have never hidden the fact that there are things she can do easily and things that will take longer and things she will never be able to do -
JUST LIKE EVERYONE ELSE IN THIS WORLD.
"It is forever ago that I stopped thinking
Down syndrome is a dirty word,
and just see it the same as anything else."
Miss Chloe says she COMES FROM Down syndrome, and I agree with this concept.
On planet Down syndrome,
they do things differently, they take longer to learn our ways, they see things differently then we do, they are very clear in their thinking and they 'Say what they mean'.
I have many friends of different nationalities and I GET what Chloe is saying.
Whenever someone is in a conversation with Chloe I suggest they listen like they are listening to a heavy accent (I will never, and have never - ever spoken for her), and this is what I do when speaking to other people with Down syndrome.
"Yes, Down syndrome has it's
challenges, but shame or heartache, shouldn't be one of them"
Please do not assume your child will have a difficult life just because they have Ds.
They are more likely to have a difficult life because they are told it will be difficult!!
When you meet Miss Chloe and say:"It's nice to meet you", she most likely will respond with:"I know".
Over the years I spent a lot of time mentoring teens with very low self-esteem. I would actually tell them to go & spend some time with Chloe, as Chloe is a person who presumably has lots of reasons to have low self-esteem and has NONE!!!! She thinks she is awesome and so do most other people, and if they don't, she doesn't really care that much!
Recently we went to her weight specialist. Yes, she is overweight. The specialist asked if she would feel better if she lost more weight and Chloe looked at her and went:"Huh?"
I suggested to the specialist that she already feels good about the way she looks and we need to focus on the health aspects.
WHAT A WOMAN!!!! I SOOO ENVY HER WITH HER HEALTHY BODY IMAGE!!!!
Down syndrome is not something to be ashamed about, it is not a noose around anyone's neck and it is not dirty word ,UNLESS YOU MAKE IT SO.
Our kids will become whatever we project onto them.
WHAT ARE YOU PROJECTING ONTO YOUR CHILD AND THE REST OF THE WORLD?