We have a little girl, Abby, who is 18 months old and has down syndrome.
We found out that there would be a >1:4 chance that she might have Trisomy 21 at our 12 week ultrasound scan. This came as quite a big shock because one hopes to go to these check ups and be told that everything is normal. However, that was not us. This statistic was further increased when we did a NIPT test and her diagnosis was then fully confirmed at birth.
The whole journey of finding out that our baby girl was very likely to have down syndrome was very emotional because so much was unknown. For me this was a very overwhelming thought. What would schooling look like, what would relationships look like, will she have friends?
I think when it comes to things being ‘different’, we all think that we are accepting of it, until the ‘different’ affects us directly.
We had no idea what life would look like, and we still don’t quite know what the future has in store in terms of how Abby will develop.
But one thing we have come to realise is that we can only do our best each moment of every day and then the future will unfold as it is meant to.
The sad thing is that there are many misconceptions when it comes to down syndrome and unfortunately there is a big gap between receiving the medical diagnosis and being referred to some form of counselling. Or simply being put in touch with families who have a child with down syndrome.
I really hope that our story can shed some light on the fact that individuals with down syndrome are so much more than what the ‘original internet search’ might reveal.
Abby has shown us that she is one strong and very capable little girl when given the tools to do so. It does involve more therapy than a child without down syndrome would go to, but the extra work just makes it so much more rewarding and there is so much joy when she progresses from milestone to milestone. Abby is currently going to speech therapy, physiotherapy, occupational therapy and she even started swimming lessons!
This journey definitely was not what we had imagined, but through all its ups and downs, we have the most beautiful, joyful little girl that we would not change for the world!! She is such a happy little girl and spreads so much joy wherever she goes!- and no- she is not always happy. She has her moments of big emotions just like any other toddler! (A bit of a myth about individuals with down syndrome is that they are always happy)
By Mariella Sawyer,
Pro Triathlete, Registered Dietician and Mom.