Our sister Maia
The days following Maia’s birth are a bit of a blur, as we were referred to so many different health professionals, including a geneticist.
Although Maia had some of the classic physical characteristics associated with Down syndrome, they still did a blood test to check her karyotype, so they could confirm she had trisomy 21. When the geneticist met with us she told us that Maia’s trisomy 21 was the result of a random event and there was no familial connection. The chance of me having another child with trisomy 21 was 1:100, depending on my age related risk. She explained everything in a clear, truthful way and I really appreciated that.
Amongst all the technical information there was something she said that really stuck out to me. She said that lots of studies had been done on the siblings of people with Down syndrome. She said the siblings grow up to be kind, empathetic, loving people because of their experiences.
Yes, Maia did have Down syndrome, but I knew immediately that having her in our family would be a positive thing and would help us to develop empathy and unconditional love. I thought about how our children would take these characteristics into their communities. I knew having Maia would make our family, and therefore the world, a better place and all the worries disappeared.
When Maia was born, Samuel was six and Noelani was two. Now they are 10 and 6. I asked them what it is like having a sister with Down syndrome.
Noelani said that Maia is annoying because she pulls her hair and snatches the iPad off her. But she is cute when she has no snot. She said she tells her friends that Maia has Down syndrome and this means she is our baby and she is not allowed on the trampoline. She can only sit on it or do little tiny jumps. Noelani has been impatient waiting for Maia to reach her milestones as she wanted to be more interactive with her. But now she’s her little sidekick as they play together and I hear Noelani saying things like “Maia this will look beautiful on you, it will make you look cute” or “Good girl Maia, you brushed your teeth, you are a big girl now”.
I have no doubt that Noelani will be the older sister who will teach Maia all things girly and help her to navigate fashion, hairstyles and boyfriends as she gets older. She will help Maia feel comfortable in her own skin and show her how to express her individuality in the way she presents herself.
As Maia’s older brother, Samuel has always taken on a more protective role and he worries for her. He always keeps a watchful eye on her and makes sure she is safe and happy. He said that if Maia didn’t have Down syndrome she could have learnt more stuff by now and she would be talking.
He explains Down syndrome to his friends by telling them Maia has a disability and that means it will be harder for her to do things in life and she is going to learn things slowly. He thinks about whether Maia will make friends at school and if people will tease her. If they do, he said he will protect her.
He said if Maia doesn’t have a house when she is older than she can live with him and he will pay for her needs and her creams and all of her special medical stuff. He said that because of Maia he has learned to love people no matter what - even his other sister Noelani, who is so annoying!
Samuel told me that when Maia was born he felt sorry for her because she could have had a more perfect life, but that she will still have a wonderful life because of us. But I know that in the end it will be us who will have a wonderful life, because of her. As the children grow older, I hope that they will recognise this themselves too.
Read the rest of Maia's adventures