A letter to my niece

Dear Emma,

It’s been nearly seven years since you made me an aunt for the fourth time, arriving during an uncharacteristically sweltering Scottish summer. While your poor mum was spending the days before your birth desperately trying to find ways to keep cool in a heatwave at nine months pregnant, your aunties, uncles, granny and big cousins passed the time by having a little family flutter, making bets with each other as to what date you would be born.

Your due date was perilously close to the day I would turn thirty-five and I was hoping you would have the decency to leave a bit of daylight between our birthdays. I didn’t fancy my own big day being overshadowed every year by the perennially younger, cuter, Cancerian in the family.

After each of us had made our predictions on what date you’d arrive, we’d moved on to some of the other unknowns, guessing whether you’d be a girl or a boy, what weight you might be, what names your mum and dad might choose for you.

Finally, the call we’d all been expecting came. (Four days after my own birthday, so thank you for that. Your spot in the will is guaranteed). You’d been born at 3.36am in the morning, a girl, weighing 6 pounds 5 ounces. You were called Emma. There was also some unexpected news: you had Down’s Syndrome.

While we waited to be able to visit the hospital and meet you, myself and your Auntie Ruth set out to become Scotland’s leading experts on trisomy 21, using only the power of Google. As the doctor in the family, your mum would usually have been first port of call for any health-related queries, but as she was preoccupied with recovering from childbirth and adjusting to the realities of parenthood, we decided to be good sisters, for once, and give her a day off.

There were so many questions and it felt imperative that we knew the answers right away. What did this mean for you? Were there any immediate risks to your health? Would you have to stay in hospital for a while? How might your life be impacted by Down’s Syndrome, five, ten, fifteen years from now? The IT guy at Down’s Syndrome Scotland is probably still trying to work out what happened that day in 2013 when their website received a month’s worth of hits in twenty-four hours.  

A day later, I walked into the hospital room to meet you for the first time and the sight of you pushed all of those questions firmly to the back of my mind. They were still there, but I knew they would wait while I got on with the much more important business of getting to know my beautiful niece.

During those early weeks and months, though, I tried to learn as much as I could – from conversations with your mum and dad and a few too many visits to Dr. Google – about what life with Down’s Syndrome might look like for you. It didn’t take too long to understand the significance of those words ‘might’ and ‘for you’. The more I read and the more I spoke to your mum about how having Down’s Syndrome might impact upon different stages of your development, the more I realised that your path was just as unwritten as those of any of your cousins when they had been born.

Yes, having Down’s Syndrome would impact your life, it was, and is, part of your DNA. But so is your mum’s generosity, intelligence, diplomacy, grace under pressure. Not to mention your dad’s ability to faff for Scotland, watch ten straight hours of golf without blinking and magically turn a one-day work conference into a three-day mini break. (Sorry Stu, but if you wanted compliments you should have asked your sister, not sister in law, to write this).

Like any child, you were that mysterious mix of inherited characteristics, individual traits and to-be-fulfilled potential that magically come together to make something unique. It was impossible, and seemed pointless, to predict how all of those things would interact with your Down’s Syndrome to make you, you.

But all of the Googling, all of the conversations with your parents, all of the trying to piece together a picture of the person you might become, did, as it turned out, have a point after all. It helped me to realise that what I wanted for you was exactly the same as what I wanted for all of the children that had been and would be born into our family. To thrive.

Thrive. It’s one of my favourite words, because it’s the one thing that we can all aspire to and the one thing that, with the right support and conditions, we can all achieve.

‘Excellence’, ‘greatness’, ‘brilliance’: not everyone will accomplish these, most people won’t, but all that any of us truly needs to be happy is to thrive. Succeeding, attaining, and finding fulfilment on our own terms, in our own environment, on our own time.

It’s been nearly seven years since that particular lightbulb moment and I have to say, you’re smashing ‘thrive’ out of the park. (You get that competitive streak from your mum’s side of the family). Before I sign off, I wanted to let you know just some of the ways that you, Emma, are thriving. I can’t wait to see where the next seven years will take you.

T is for Tenacious (definition: holding tightly onto something, or keeping an opinion in a determined way). A vital quality for success and one that you have in spades. If you want to do something, or equally, don’t want to do something, there is little that can be done to persuade you otherwise. So far, my record for successfully refusing to hand over my iPhone stands at four minutes twenty-seven seconds. I think that you would patiently wait for me to slip into unconsciousness before prising it out of my hands, if it came to it.  

H is for Hilarious (definition: extremely hilarious and causing a lot of laughter). You’re definitely the comedian in the family, an admission that it pains me to make, as I’m pretty sure I held the title before you came along. Your skills for mimicry (taking the mick out of your elders, in other words) are unrivalled and your insistence on calling your Uncle Tommy ‘Uncle Mommy’ even though I know you can say it properly will never not be funny.

R is for Resilient (definition: able to be happy, successful, etc. again after something difficult or bad has happened). You’ve had a few hospital visits in your almost seven years on this earth, but I’ve never seen someone go so quickly from bed bound to terrorising the nurses on the ward. Rumours that you occasionally fake illness because you have a particular penchant for hospital macaroni cheese are, as yet, unproven.

I is for Independent (definition: not influenced or controlled in any way by other people, events, or things). Sometimes, you just decide that if you want something done, then you might as well do it yourself. Sometimes, that extends to helping Granny get dressed in the morning because she’s not going quickly enough for your liking. We’re all pretending that’s why she left the house the other day wearing a tutu and a Paw Patrol t-shirt that was two sizes too small.

V is for Vivacious (definition: a vivacious person, especially a woman or girl, is attractively energetic and enthusiastic). To borrow a phrase from an old 1980s movie that I will definitely make you watch when you’re old enough, no one puts Emma in the corner. You have a knack of entering a room as if everyone has been waiting for you to arrive which, let’s be honest, they usually are.

E is for Educational (definition: providing education or relating to education). You’ve taught me a lot: to hide my phone when you come in the room, as well as any chocolate I might be eating, and every single verse of ‘The Wheels On the Bus’, to name a few things. But, along with your mum and dad, you’ve appeared in campaigns for ‘Wouldn’t Change a Thing’, smashing stereotypes about children and adults with Down’s Syndrome and helping to educate people around the world, building a society that is more inclusive for everyone. You rock.

I love you, amazing girl.

Auntie Annie xxx