Love Doesn’t Count Chromosomes: our journey with Down syndrome
Most of us grow up with our personalised vision of the fairytale life – of meeting the knight in shining armour, of falling pregnant easily and having a smooth pregnancy, raising our perfectly smart, beautiful and healthy children, having the dream house and fulfilling career. But sometimes life throws us a curveball and we discover that there can be an even better version of the fairytale than one we imagined.
We first learned that our (surprise, but very wanted and welcome) third baby had a high chance of being born with Down syndrome (otherwise known as Trisomy 21, due to having three copies of the 21st chromosome) after the scheduled prenatal testing at 12 weeks, and we went through a full spectrum of emotions. After Trisomy 21 was confirmed at 18 weeks, it’s fair to say we went into meltdown and the confirmed diagnosis raised many difficult questions and conversations. But with two other children, then aged three and 18 months, we had limited time to feel sorry for ourselves. Outwardly, we spent the next four months of the pregnancy sharing our news with family and friends in the most positive ways we could, but alone with our own thoughts and a multitude of fears, it was a very difficult time. We grieved for the ‘perfect’ baby lost in that now-shattered fairytale. But slowly but surely, piece by piece, we managed to reassemble our broken hearts and started looking forward to the arrival of our little one.
Our much-anticipated third gorgeous boy officially joined our family in March 2012 and we named him Nicholas. He was everything we never knew we always wanted, and we all fell in love immediately. Nicholas arrived with sparkly blue eyes, and white blonde hair with a curl that stood up on the top of his head like something out of a Dr Seuss book. Despite being warned that some babies with Down syndrome can have difficulty breastfeeding, he fed like a champion within 15 minutes of arriving and continued for 18 months. He didn’t like to sleep in his cot much during the day for the first few months, but settled beautifully when he was in the carrier, against the warmth of his mum, and as a family, we soon settled into the rhythm of life with three little boys under four years old.
There can be a long and somewhat daunting list that accompanies a child with Down syndrome, including possible heart conditions, low muscle tone and developmental delays. Thankfully, Nicholas has barely had a sniffle in his first few years of life and doesn’t appear to have any significant health concerns. However, one of the most important things we have learned in the 2.5 years of having Nicholas in our life is that Nicholas is a person, first and foremost, not a diagnosis or a list of associated symptoms, and we will continue to give him all the love, care and attention he deserves, as we would any child, and not just put things down to the ‘that’s because he has Down syndrome’ assumption.
We have high expectations of Nicholas. We want him to become the absolute best Nicholas he can be and we will help him achieve whatever he wants to put his mind to and give him every opportunity to do so. We don’t want the fact that he has three copies of the 21st chromosome to be an excuse or to limit him. However, we also accept Nicholas for who exactly who he is – and these two things, expectations and acceptance, aren’t mutually exclusive.
Over the past few years, we have learned the importance of ‘people-first’ language that focuses on the person, rather than the diagnosis. But it’s not just about being ‘politically correct’. Language is such an important tool, especially in breaking down stereotypes and ensuring everyone is treated with respect. For example, we would say ‘a child with Down syndrome’ rather than ‘a Down syndrome child’ or ‘Downs child’. We say that Nicholas ‘has’ Down syndrome, not that he ‘is’ Down syndrome or that he ‘suffers from’ Down syndrome. He also has blonde hair, blue eyes and a killer smile – all features that make up who he is, but they don’t define who he is. And, just quietly, this boy is not suffering from anything except being ‘dangerously cute’ (as quoted by his speech therapist ;).
People with Down syndrome are often referred to with platitudes such as being ‘always happy and loving’. While Nicholas is particularly happy and resilient, I put this more down to a requirement of being a (sometimes neglected) third child rather than having Down syndrome. As with any child, each individual is different and unique and able to demonstrate a multitude of emotions. You just watch if someone tries to take the remote control off our toddler!
We love Nicholas because he is fun and clever and gorgeous. We love watching him crawl determinedly and the way he can ride his trike round corners at lightning speed. We love his proud-as-punch face when he stands up by himself, or his cheeky grin when we discover he’s climbed onto our dining table. We love the way he does all the actions to his favourite songs, how he directs us all to have a group hug, and the way he will yell out ‘hi Dad!’ with much enthusiasm at the first sound of his Daddy walking through the front gate. Loving him is not in the least bit difficult and we think he is pretty amazing, for all the things he can do and in spite of all the things he can’t. It turns out that love doesn’t count chromosomes.
As a parent of a child with Down syndrome, we may face challenges ahead, but parenting any child will have its challenges. There are no guarantees in this job. All we can do is love our children fiercely and face each day as it comes.
In the dark and tumultuous time when we received the news that our baby had Down syndrome, we thought our fairytale had turned into a tale of tragedy. But, really, it was just the beginning of our love story.
Annie Love is a mother to three gorgeous boys, and wife to one handsome husband, Ben. Though she has spent her ‘past life’ working in advertising for Vogue magazines, running events on Hayman Island and helping Ben set up their family business called Grassroots IT, these days she gets most of her excitement from a full night of sleep and all family members eating the dinner she has prepared. In her spare time, she writes and takes photograph for her blog Mummalove. You can also find the Love bunch on Facebook and Instagram