It Takes a Village – Our Journey with Bear
This kōrero was originally shared at the Wellington Down Syndrome Association AGM and reflects our family's journey raising our much-loved mokopuna, Bear.
My name is Libby, and I am a proud nan to my mokopuna, Bear, who has Down syndrome.
Earlier this year, we had the privilege of sharing part of our whānau journey through a video presentation at the World Down Syndrome Day Conference held at the United Nations in New York.
Our presentation was called "It Takes a Village – Belonging is a Responsibility," and it focused on the importance of belonging, whānau, and community for our tamariki with Down syndrome.
I want to share a little more of our journey, particularly for newer families who may still be finding their feet.
When Bear was born, like many whānau, we did not have all the answers.
We did not know what the future would look like.
We did not know what support we would need.
And to be honest, there were times when it all felt overwhelming.
There was so much information in those early days. We spent a lot of time researching, asking questions, seeking advice, and trying to learn as much as we could. There were appointments, opinions, and conversations about the future coming from all directions.
One of the first examples of this was when Bear started solids. We had read about the increased likelihood of coeliac disease in people with Down syndrome, so like many whānau, we found ourselves researching, asking questions, and trying to understand what that might mean for Bear.
There was also a lot of trial and error, wondering whether something we were seeing with Bear was related to Down syndrome, whether it was something we needed to pay attention to, or whether it was simply Bear being Bear.
At times, it felt like people were talking about years ahead when we were simply trying to get through the next day, week, or month.
One of the biggest things we learnt through this journey is that we did not need to have everything figured out straight away.
We did not need to know what the next five or ten years would look like.
We just needed to take it one step at a time.
Another thing we learnt quite early was to focus on Bear, not the timeline.
Like many whānau, we spent time reading about Down syndrome and what we might expect as Bear grew and developed. We had read that many children with Down syndrome do not start walking until they are around three or four years old.
But Bear had other ideas.
He started walking when he was about one and a half.
That was a really important lesson for us.
It reminded us that while information and research can be helpful, every child is different. From that point on, we tried not to focus too much on what a book, website, or timeline said Bear should be doing.
Instead, we focused on Bear, celebrating his progress, supporting him where he needed it, and letting him develop at his own pace.
But Bear is Bear first.
Down syndrome is part of who he is, but it does not define him.
When we look at Bear, we do not see a diagnosis. We see a little boy with his own personality, strengths, interests, and potential.
He is funny, cheeky, loving, determined, and completely himself.
And we have learnt to celebrate the small moments, because those moments matter.
For us, one of the most important things has been the village around Bear.
Today, Bear is surrounded by his parents, grandparents, great-grandparents, aunties, uncles, cousins, therapists, teachers, friends, and a wider community who absolutely love him, support him, and want to see him thrive.
That village has made a real difference to his life, and to ours.
He will never experience loneliness because there will always be people around him who believe in him, support him, and celebrate him.
We have also learnt that support does not always come in big ways.
Sometimes support is practical help.
Sometimes it is advice from another parent or whānau member who understands.
And sometimes it is simply someone checking in, listening, celebrating a milestone with you, or reminding you that you are not alone.
One of the things that has made a real difference has been connecting with other whānau who just get it.
There is something really powerful about speaking with people who understand the joy, the worries, the milestones, and the emotions that come with raising a child with Down syndrome.
For us, belonging started early. It was never something we wanted Bear to wait for later in life.
We want Bear to experience life like any other child, to play, learn, make friends, explore his world, and have every opportunity to enjoy everything childhood has to offer.
It started in our home, within our whānau, and in the spaces around him.
Belonging is created through the way people show up for our tamariki, include them, speak to them, and stand beside them.
One of the most important things we want newer whānau to know is this:
You are not alone.
Even when things feel uncertain or overwhelming, there is a whole community here that understands and wants to support you.
We have learnt that we do not need to have all the answers.
Love, support, connection, and belonging matter more than having everything perfectly figured out.
And for us, that is what "it takes a village" really means.
Not just helping raise a child but creating an environment where Bear knows he is valued, included, supported, and loved exactly as he is.
We hope that by sharing our story, it helps other whānau feel more seen, more heard, and reassured that they are not walking this journey alone.
Ngā mihi nui.