Every year on 21st March, Down syndrome awareness day rolls around. There are inspiring pictures and videos being shared all over social media.
I can’t tell you what it’s like to raise a child with an extra chromosome - every child is different, whether they have 46 or 47 chromosomes.
But I can tell you a bit about us.
I’ve been a mother for 16 years now. When I was 21 years old a baby girl came into my life and she rocked my world.
The doctor said five words that changed my life forever - ‘your baby has down syndrome’
The first few weeks was full of ‘she cant’ and ‘she wont’ and even though she was brand new it seemed like some had written her off before she even got started.
I was told that, ‘well, you could always have another one!’
Someone even told me that I ‘should be thankful that she won’t ever know she’s different’, no, really, they did.
Another told me (I think in a weird attempt to make me feel better) ‘looking at her, she only has it a bit, round the eyes’ -NO ACTUALLY, ‘it’ is in every single cell in her body!
I also heard ‘she’ll never grow up, it will be like having a child forever’, and ‘You’re so brave raising a disabled child’.
16 years later, she’s all walking, (unless it’s far then she moans!) all talking, (won’t shut up!), all singing (only Robbie Williams songs!), sassy young lady.
We’ve had many Hospital stays and many illnesses, years of physio and speech therapy, form filling.... it’s been hard.
She is kind and caring, she is tuned into people’s emotions and she likes to make sure that people she cares about are ok.
She’s sassy and is so quick witted that she can ruin you in one sentence, but then can make you feel on top of the world with a heartfelt compliment.
She has lots of friends, she’s popular in school, she attends a special school and is just about to start 6th form.
She’s been a model for about 2 years and she struts her stuff like a pro on the catwalk or stage- loves the hair and make up, the clothes and the photos.
Down syndrome is not sadness or shameful, it’s not embarrassing, it’s not a tragedy, it’s not the end of the world, It’s not a failure.
The last 16 years has had many lows for sure, but the highs outweigh them a million times over, my proud mum moments are different from yours, and that’s ok... I’ve shed a lot of tears over the last 16 years...mostly from the side splitting laughter.
Our home is a happy home, our life is a great one.
Reagan doesn’t suffer from Down syndrome, she suffers from society not giving her a chance, she suffers from people not valuing her worth, she suffers from people looking at her and assuming that they know about her...look at her what do you see?
I see a young lady with purple hair (her mum must be cool to let her do that, right?)
Those five words the doctor said to me
‘Your baby has down syndrome’ I used to hear them in my sleep, the tone of his voice, the look on everyone’s face when he said it. Could have destroyed me, but I’m stronger than that. I am, and so is she!
There are however, five other words that I have heard that were soul destroying - the most upsetting part was that they came from Reagan’s own mouth:
‘Mum, I’m a Liverpool fan’
I won’t ever get over that.
Her being a Liverpool fan, - now that my friends is the real sadness, shame, embarrassment and tragedy here. Nothing can prepare you for those five words.
Down syndrome is not a life sentence, it’s a life enhancement