‘I already felt fairly experienced as a parent of three, but Mya has added many more strings to my parenting bow!’
Written by Mya’s mum Tracy
‘The baby might have Down’s syndrome,’ I said to my eldest son aged 16. ‘Ok’ he said, ‘it’ll be fine.’
I shall never forget those words, the simplest and most unphased response from the young man who was to become one of three big brothers to our wonderful daughter. Our journey with Down’s syndrome started in November 2017 with a high chance screening result of 1 in 20. Having suffered three miscarriages, I felt like the world was throwing me yet another curve ball in my journey to have a fourth child. After a 99% high chance Non-Invasive Prenatal Test (NIPT), I felt like my world had fallen apart. I remember crying in my husband’s arms, staring out of the window and thinking ‘why me?’ Now I realise ‘why me’, as I was blessed to be one of the lucky few. I had a pretty straight forward pregnancy and was well supported by my wonderful midwife and all the team at our local hospital. I was induced two days before my due date, as the consultant didn’t want me to go past full term, and our beautiful daughter, Mya, arrived in a flurry of excitement a day later. Soon after birth, the midwives noticed she wasn’t quite pinking up and she needed some oxygen. Unfortunately, she wasn’t able to hold her own oxygen levels so had to be whisked off to the Special Care Baby Unit to be looked after.
My husband didn’t leave her side and kept me up to date with pictures, whilst I was still on the delivery ward, telling me that she was a right wriggle bum and that the nurses kept commenting on her strength and feistiness!
Her brothers were there within hours of her arrival, eager to meet their precious new sister. They weren’t phased by the tubes and wires, or her being in an incubator, they were just proud to call her theirs. On day two Mya drank her first milk from a bottle and then there was no stopping her with feeding. She continues to love her food to this day, asking me for biscuit, chocolate, cake, banana, crispies, basically anything she can sign and say to tell me she wants to eat! Next followed a 19 day hospital stay while they tried to work out Mya’s level of oxygen requirement. Unfortunately, she wasn’t able to hold her own oxygen levels so we went home with her on full time oxygen. We got used to a whole new way of life with cannisters, tubing all over the house and regular sleep studies. But, we had our princess home and our family was finally together and complete. Mya’s older brothers have absolutely doted on her since day one. They make me burst with pride for their love, patience, understanding and encouragement. I truly believe that her being here has made us all better people and I have learnt so much. I already felt fairly experienced as a parent of three, but she has added many more strings to my parenting bow! At five months old the call came to say that her latest sleep study had been fantastic, and Mya could finally come off the oxygen. I felt like all my Christmases had come at once! To be able to kiss that gorgeous face and cuddle her tight without knocking tubes out of her nose, was the most magical moment.
Watching her grow through the following months and years has just filled me with pure elation, and a joy I cannot describe.
She is the most gorgeous little human; she’s cheeky, determined, loud and so expressive. She knows exactly how to get what she wants and has us all wrapped around her little finger: brothers, grandparents, aunties and uncles alike. Mya started taking her first steps just before she was two. I wasn’t expecting it and the first time she did I couldn’t contain my excitement! One of my proudest moments was her being a flower girl, at our wedding, at the age of two-and-a-half. Walking down the aisle (in her own way and time!) was something I had dreamed of since she was born. Mya has attended a private nursery since she was 12 months old. They have been fully supportive of her and have helped with her development in any way they could. Now, at three-and-a-half she has started at our local mainstream school, in the nursery. On the evening of her first day, the nursery teacher phoned me to let me know how Mya had got on. She said ‘her day was amazing, and she is amazing’. Just when I thought I couldn’t be any prouder!
Mya loves going to nursery school and even though her speech isn’t its strongest, she manages to make her feelings known, and I am hopeful that as her communication with other children improves, she will learn the social side to school, making friends and playing with the other children.
The school are fantastically supportive and have taken up Makaton training and further training on Down’s syndrome to help Mya and other children to thrive in their care. Mya’s youngest big brother is so proud to have his little sister at his school, especially when they get to see each other through the fence at breaktime! I wouldn’t change a thing about Mya, but I am forever grateful for the change she has made in me. She has made me a better person and mummy, and tied a tight ribbon around our family unit where she is the biggest, sparkliest bow!
We love hearing from new parents like Tracy about their little ones.