Love is not a burden

As part of our campaign for World Down Syndrome Day 2021 we have released an e-book, full of stories from real families. The book includes many different family members and people with Down syndrome sharing how they feel about their family. This week we wanted to share with you a piece written by Hannah, sister to Grace. If you would like to download our free e-book you can find it here.

I was sixteen when I found out that I was finally getting the sibling that my mum and I had dreamed of for years. We soon found out that it was going to be a baby girl but that she had some health issues – that really frightened me. At 34 weeks pregnant, we found out baby girl was going to have Down syndrome. Call it teenage naivety or maybe a feeling of what was to come, but I was genuinely not at all worried or concerned by her diagnosis. While the adults in my life came to terms with the news, I felt peace about our girl’s extra chromosome and I just couldn’t wait to meet her.

At 36 weeks pregnant, I got the text from my mum that her waters had broken – my sister was on her way! We had decided early on that I was going to be one of my mum’s birth partners and I felt so lucky that I would get to see my sister come into the world. I will never forget the moment Grace Isabella was born. The labour room was full of people, anticipating her health conditions, but for a few moments it felt like it was just me, my mum, my stepdad and this beautiful little bundle…my sister. 

Seeing Grace grow up has truly been one of my greatest joys. She is such a funny, sassy girl and everyone who meets her comes away slightly changed. She has made me slow down and find more patience. She has helped me to celebrate ‘little’ milestones just as much as the bigger ones. Her extra chromosome doesn’t change our sister bond: I’ve cried with her as she’s stroked my hair and told me it’ll be OK, we laugh and dance together, she rolls her eyes and asks when I’m going home when I’ve annoyed her and we both moan to each other when our mum is in a mood. She is the little sister I always dreamed of and so, so much more. 

All the milestones in my life have been made even more special by experiencing them with Grace. One of my first thoughts when I found out that I was going to become a mum myself was how excited Grace would be. I could not wait to experience raising children alongside her. Grace was 7 when she became ‘aunty Grace’ to Halley and she was a fully-fledged aunty when her nephew Spencer was born two years later. I had so many dreams about Grace with my children when I was pregnant – I couldn’t wait to see them playing in my mum’s garden, getting into trouble together, having dance parties (which is mine and Grace’s favourite thing to do). My dreams did not even come close to the happiness I feel when I see my baby sister in her ‘aunty Grace’ role. She is, hands-down, my children’s favourite person in the world. Halley loves anything that her aunty Grace loves because she idolises her so much. And the trouble they get into together… well that is on another level! We’ve had faces completely coloured in with felt-tip, shampoo lathered into my mums bed, barricades made to keep baby Spencer out and the thing is, I know that this is just the beginnings of their escapades together. Before long it’ll be stealing my makeup and sneaking out to go to the pub together and truthfully, I can’t wait to see what they get up to.

I feel so lucky, every day, that Grace came along. She healed holes in our family that we didn’t even know were there. My mum and I became closer than I thought was possible when Grace was born – my mum and her mum became closer – she became the glue that held us all.

I’ve heard of parents / expectant parents worrying about the burden that a sibling with a disability brings. I have never, and will never, see my sister as a burden. I love her more than anything, she brings so much joy to my life and I will protect and advocate for her for my whole life. Love is not a burden. 

I wish I could go back to my sixteen-year-old self and tell her, you were right, that extra chromosome doesn’t change a thing. Grace goes to mainstream school and loves it, she’s got a big group of friends, she goes to dance class and does modelling all over the UK. And most importantly, she is the most amazing, loving sister and my life is all the richer for having her in it.