We knew that Edwyn was going to have Down syndrome. I had a blood test – the ethics around that are something I’m quite interested in now – and found out when I was ten weeks pregnant. I was shocked, but social media was amazing: I read so many stories about people all over the world raising children with Down syndrome, and literally everything I read was positive. There are challenging aspects, but overall, everyone was raving about how having a child with Down syndrome changes your life for the positive.
To put the Down syndrome thing in perspective, when he was ten days old, Edwyn was diagnosed with a malignant tumour in his bladder. It was horrendous. To cut a long story short, they said he had this rhabdomyosarcoma, then they tested him and after a long time they decided he didn’t have it. It disappeared, like a miracle. It was a horrific journey, but what it did was make the fact he had Down syndrome insignificant.
I definitely think being mum to Edwyn has made me a better person. I’m much more aware of and open to people with differences. Edwyn is so joyful and happy. He is challenging – not because he has Down syndrome, but because he’s two! It is more difficult for him to communicate – he can understand more than he can say, so that’s tricky. I’m learning sign language, and he responds really well and can use quite a few signs along with spoken words. He doesn’t have hearing difficulties, but people with Down syndrome have low muscle tone so they find it harder to form words. Edwyn’s got about 40 spoken words and lots of accompanying signs, but I can tell that he gets frustrated. His favourite thing to do is to go for a walk and say hello to literally everyone. He wants to engage, which I think is really special. My neurotypical children don’t do that to the same extent.
We’ve just moved to Blenheim. We were living in Wairoa, in Hawke’s Bay, and that definitely added to the journey of having a Down syndrome child, because we were in rural isolation. It was challenging at times, but also incredibly rewarding and really special; we were blessed to have Edwyn in Wairoa – he was treated like a treasure, a taonga, and we actually got incredible services. The difficulty was that I was having to drive two-and-a-half hours to Hastings Hospital for his appointments, which was exhausting. I felt very supported there, but going forward, it was easier to live in a bigger place. Blenheim’s quite small, but moving from Wairoa – it was like moving to New York!
Edwyn’s enrolled to start at Montessori when he turns three. I think it will suit him because he does better with a structured routine. There’s a slightly higher ratio of teachers to children and he does need more attention than a typical child his age. I think he’s the first child with Down syndrome they’ve had there. It’s new for them, so they’re going to be learning quite a lot as well. But they’re really open to that and they seem really excited. It’s definitely a journey; there’s so much I need to learn as well. I do miss working and having a creative outlet – it’s very rare for me to have any free time – so when Edwyn starts Montessori, I will return to the creative industries.
Edwyn is fantastic. He teaches us all the time. People with Down syndrome have defining features, but I don’t see him as having a disability. He’s just Edwyn, he’s his own person, and I hope that I can bring him up in a way that he’s defined by himself, not by his disability.
This story appeared in our very first Social Club newsletter.
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