The Blog

Still Learning

A couple of days ago I was holding my baby daughter in my arms and something happened that literally took my breath away. I glanced down at her and was struck by how much she looked like her oldest brother. Her eldest brother has Down's syndrome.

A couple of days ago I was holding my baby daughter in my arms and something happened that literally took my breath away. I glanced down at her and was struck by how much she looked like her oldest brother. It could have been him in my arms. On the face of it, this is nothing unusual, it must happen to parents everywhere, every day. After all, pure siblings share the same genetic make up.

Her eldest brother has Down's syndrome.

The same thing happened the day she was born. She was handed to me, wrapped in a towel and the standard issue smurf hat, and my first overwhelming thought was how like Seb she was. Such was my surprise, I spent the first 24 hours of her life wondering whether she had an extra chromosome and I didn't really relax until the paediatrician had given her the once over.

I am really ashamed of these thoughts now. I didn't consciously think them, they just appeared, but as someone who tries to educate that people with Down's syndrome are more like their families, their brothers and sisters, their parents and their cousins, than they are like each other, I should have known better. Five and a half years on and it seems I am still learning.

Seeing Polly as Seb was a bittersweet moment. It made me realise how I missed out on my first born's precious baby days. I couldn't see a baby, I just saw Down's syndrome. Every time I looked at him my heart shattered into a million tiny pieces and my face flushed hot and red as I made a mental checklist of all the features I had read about in the literature I had been given. His almond eyes, his small ears, his button nose. I failed to see beyond. I specifically remember bouncing him in his chair, looking him over and sobbing my heart out. He looked right into my eyes and beamed me the biggest smile. Just like Polly does...

I remember wondering what Seb would look like without his extra chromosome, photoshopping his beautiful little face in my mind. Making him longer, leaner, 'normal'. Yet all I really needed to do was to stop seeing him as a syndrome and focus on him, the individual.

Thankfully, I am no longer the frightened and misinformed rabbit I was as a new mother. Bit by bit i fell in love with my little boy as he did all the things that babies do, just at his own pace. He smiled, he laughed, he rolled over, he crawled, he walked, he talked and soon his personality started to shine through and the 'label' dropped away.

I realise my past ignorance, I try to learn from it and try to prevent anybody else being robbed by theirs. I (mostly) write about positive experiences and hope to make the world a slightly better place. One thing that does still occasionally rear its' ugly head though is my fear of Seb's future. Admittedly, it doesn't scare me as much as it used to, but it is there.

At the moment Seb is in year one. The gap between him and his peers is not too wide and he has friends. I am realistic though and know that as they get older the space between them will grow and he may fall out of favour, struggling to maintain meaningful relationships. I worry that this is where inclusion may fail him. Will others find him as endearing as a teenager as they do now?

So here is lesson two. A few weeks ago, we had the absolute pleasure of meeting Ruben, a young teenager who has Down's syndrome. He is a champion swimmer, with countless gold medals to his name. He recently starred in a groundbreaking documentary Breaking Free with two other children, who also have Down's syndrome. When we met, he was charming, polite, articulate and bursting with personality (not to mention very patient with my young kids!). I thought to myself how proud his parents must be (I particularly loved it when he addressed his mum as 'love' in his broad Northern accent). He leads a really typical, full and rewarding family life, goes to mainstream school, has likes and dislikes and hobbies and has excelled in many areas.

I realised that I have nothing to fear of the future. The reason I am scared of it is because I am still making assumptions. I am still looking to the future through the eyes of a text book and failing to see beyond the condition. I am imagining a person that I don't know yet. I am seeing a teenager with a condition instead of my son in a few years time. I already regret bypassing Seb's baby days and I don't want to miss another single precious moment due to my own ignorance.

Seb will always be Seb. This won't change. Every day we will evolve together and he will grow up to reflect his upbringing and his siblings and those around him that influence him, just like any child. The children he plays with at school will grow up to understand diversity and I hope a new generation of acceptance will be borne, that will see a person first and foremost and not a syndrome.

Yes. I am still learning. Bear with me.