To the Mom Who Asked Why a Down Syndrome Diagnosis Is a Great Thing

I read a question today another mom posted. She recently gave birth to a child with Down syndrome. She said she’s constantly told her life will change forever and how great it’s going to be from now on. She wonders why. She holds so much fear of the unknown and is genuinely interested in why it’s so great and what changes she can expect.

Yes, it’s scary. The unknown terrifies us too. It was scary when we were told of our daughter, Millie’s diagnosis, and it still is just as scary today. Every time I see a suspicious-looking dot on Millie’s body, I wonder whether it is the first visible sign of leukaemia. When she stares off into space, daydreaming, I wonder if she’s having an absence seizure and will be subsequently diagnosed with epilepsy. When she does splits, I wonder whether she’ll need orthopedic surgery when she gets older, due to joint deterioration. When she sneezes, I wonder whether it’s going to result in a hospital admission later in the week after developing pneumonia. These may seem to you like irrational fears, but they’re a few of the many things that are more likely to happen to a child with Down syndrome.

How has that changed my life? I didn’t have those worries about my kids’ health before Millie was born, and didn’t need to take such drastic measures to protect them. But with Millie, we’ll miss a big event because of a sneeze. It means her immunity is probably lower than usual, and I don’t want her around others with any minor illness that could land her in hospital. I’m sure there’s plenty of people who don’t bother inviting us out anymore, given the number of times we thought it best that we shouldn’t go somewhere or cancelled at the last minute. The doctor appointment I’ve forgotten about may mean I need to ask my best friend to reschedule our catch-up. Three extra appointments this week means I’m behind in my work, and if I miss deadlines, I could lose a client. Spur of the moment arrangements are almost impossible, and the extra precautions we take mean we often miss out on things we’ve been looking forward to.

It’s heartbreaking to watch a little 1-year-old boy run up to the playground equipment, as I watch Millie straggle behind doing her crab crawl, stopping to pick off the pieces of wood chips stabbing into her hands. She tries to keep up with the little boy, who’s half her age, and she watches him do it so effortlessly.

Having said that, almost every time I walk past a new mom in the street and peek into the pram at a gorgeous, sleeping newborn baby, I hope to see a little baby with epicanthal folds in his or her eyes that have an upward slant. I hope to see a tiny (or non-existent) nasal bone and a little tongue poking out due to low muscle tone. Why do I wish those life-changing worries and inconveniences on somebody else? It’s because the good stuff far outweighs the bad stuff.

My daughter has taught me to be patient. I’ve deleted the milestone charts from my computer because they don’t matter anymore. There’s no competition. There’s no pressure. Milestones will be reached when they’re reached, and we’ll have fun helping her along.

And the little things, too. There were cheers of praise last week when Millie recently learned to drink from a straw. She also blew into the recorder by herself for the first time — three months after her first unsuccessful attempt. She’s almost mastered the trike she’s been trying to ride almost daily for the past six months. She’s been trying to stand independently for about eight months now, and every day she’ll stand for a second longer than she did the day before. I know that soon, whether it be next week or six months from now, she’ll walk towards me to wrap her little arms around my neck for a cuddle, instead of standing there, putting in 120 percent effort to hold her balance for longer than she did yesterday.

We’re celebrating progress and achievements every single day in our house, and watching her work hard to do what she wants to do makes the whole family proud of her. It’s all worth the wait, and it feels a little bit more special when she finally achieves what she’s been trying hard to do.

She’s recently started daycare. I watch the other children who are the same age as her interact with her. “Is Millie a baby?” “No, Millie’s not a baby. She’s 2 and a half, just like you. And will be able to do what you do, but she might need some extra help, and it might take a little longer to do it on her own.” Millie is constantly teaching other children her age about inclusion and acceptance, and the positive attitude of the carers is all helping shape the thinking of these children as they become teenagers and then adults. I’ll make sure their experience being around Millie is a positive one, and step by step Millie can help change any negative perceptions of the world, just by being Millie.

On the rare occasions when you pass another parent in the street who also has a child with Down syndrome, more often than not it’s like meeting up with a long lost friend, and you’ll find yourself standing and chatting for an hour. It’s like a secret society, and if you know the secret handshake, you understand.

When Millie learned to put a spoon to her mouth and actually put food in, we celebrated like she’d just climbed Kosciusko. I can’t remember such a fuss over these simple achievements with my typically developing boys, and friends with typically developing kids probably don’t quite understand our excitement. We’ve all learned to become moms and dads, brothers and sisters, best friends, therapists, counselors, nutritionists, advocates and fighters, all thanks to our precious little people with Down syndrome.

I’ve watched my boys, with their tolerance and patience, develop into understanding young men, more so than I ever thought they would. I see their concerns when Millie is unwell and their genuine excitement when she learns something new. They’re little teachers, they’re little therapists and they’re little advocates who are willing to do whatever they can to make sure Millie is happy because it makes them happy too.

So yes, I do feel a twinge of disappointment when that baby in the pram doesn’t have those features of Down syndrome I’m hoping to see. It’s because I want every parent to be able to experience what we’re experiencing. I want to open up our world and bring you all inside and see how delightful life can be, despite the challenges and frustrations of raising a beautiful little person with an extra chromosome.

The difficult stuff will change you for the better. The friends you’ll meet will share every ounce of excitement over those tiny little wins. The five minutes of worry over that spot you’re convinced is due to leukemia will quickly be overrode by the sound of a recorder being blown in your ear and celebrated for the next hour or more. And as you sit home and dwell about missing your best friend’s birthday dinner for the second year running because your child has a cold, you’ll be interrupted by your snuffly toddler on the scooter running over your foot and cry tears of joy that it happened.

So to the parent who asked that question about why we say it’s so great and in what way will it change your life — that’s why. And, before long, you too will hope that the parents of the little newborn you’re admiring in the pram is going to be one of us who has had their life changed, just like yours was.

Follow this journey on Little Miss Millie – Watch her grow.