What I Wish I'd Known When My Daughter Was Diagnosed With Down Syndrome

by Tim Heyes for Fatherly
Originally Published: 
Down syndrome
Tim Heyes

There are four of us in our family. There’s a mom and a dad (Hannah and Tim, from this point on referred to as “we”), an older brother, Austin (he’s 5), and a younger sister, Laurie (she’s 4).

Laurie loves putting her dolls to bed, going to school, bouncing on the trampoline, and being chased. Laurie was also diagnosed with Down syndrome (Trisomy 21) when she was 9 weeks old.

Austin loves Star Wars, Superman, bats, and dinosaurs and wants to be a superhero when he grows up. We’re a normal family.

Tim Heyes

Now that’s a fairly bold statement. What’s normal? Well, normal for us is sometimes staying in our pajamas until lunchtime on a Sunday. Normal is two children fighting over a lightsaber while dressed as a fairy and a werewolf — all standard family things. I guess we like to think of ourselves as normal with additions or normal-plus.

Laurie was born at home in our bedroom (all planned by the way) after a very calm, very quick labor at 7:30 a.m. on April 13, 2012. Austin met her later that day once he had come home from daycare. We said, “Austin, this is your new baby sister, Laurie.” He looked at her, looked at us, and simply said, “Lalu,” and that’s what she’s been called by family and friends ever since.

We got on with having a new baby for another eight weeks, and it was at her eight-week visit that we asked the GP to have a look at her feet because she had a large gap between her big and second toes. A week later, we had a diagnosis of Down syndrome, and that was the start of a new leg of our journey.

It was a shock and a big adjustment. So what happened next?

We concentrated on family life for a bit. We told family and very close friends, but we didn’t worry about telling other people at that point. We focused instead on getting into a routine as a family and giving our children as much love as possible, and that helped us to stay grounded and look after ourselves. Then, when we were ready, we shared the news with other people and made sure they knew we were comfortable answering any of the questions that they naturally may have.

We are fortunate to be able to say our families on both sides are fantastic. They are keen to learn all about our day-to-day routines and what they can do to help. It is invaluable to know that someone is there if things are a little tough, which they can sometimes be.

We learned about the way our daughter — or any individual with a diagnosis of Down syndrome — learns and processes information. And health professionals and new friends have provided and encouraged us to use techniques and tools to help Laurie blossom and thrive as an individual who enjoys learning about and participating in the world around her.

This has had a positive impact on the way we see ourselves as parents, as we now feel able to help her to the best of our ability because we are learning how she learns and how she thinks. And in this, we know we are doing our best to help her live to her full potential.

We have challenges. Sometimes it feels like an uphill struggle. But we feel lucky, and we feel blessed. Are there things we wish we’d known? Well, the winning numbers for the lottery for one! You can’t know the future, but you can make plans for your family. You can set in place ways to help your children when they’re older and ways to help them when you’re gone.

But surely the healthiest way to live, for yourself and for your family, is to be in the here and now, enjoying each other, being a family, and accepting the challenges that come — because they will come. That’s life.

If we were to write a letter from ourselves now to ourselves at the beginning of this journey, it would possibly go something like this:

Dear Us,

Don’t worry too much. You’re actually going to be fine.

Your children are beautiful and incredible and amazing, and sometimes annoying and infuriating, and they’re going to make you laugh every single day.

Try not to worry about things that haven’t happened yet.

Plan well, but enjoy each day.

You’ll be fine.

This post originally appeared on Quora.

This article was originally published on