Kate has a little girl with Down syndrome. When she asked me to proof read a post she wrote for her Facebook page, it was such an honest and emotional read I had to publish it on this website, too!

Kate writes;

“I read a question today posed by a mum who has just had a child with Down syndrome. She said she’s constantly told that “her life will change forever”, and how great it is going to be from now on. She wondered why. She holds so much fear of the unknown, and was genuinely interested why it’s so great, what will change.

Yes, it’s scary. It was scary when we were told of Millie’s diagnosis, and it still is just as scary today. The unknown terrifies us. 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 diagnosed with epilepsy. When she does the splits, I wonder whether she’ll needed orthopaedic 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 because she develops pneumonia. They may seem to you like irrational fears, but these are a few of the many things that are more likely to happen to a child with Down syndrome than one without.

How 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 that sneeze. 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 in the coming weeks. I’m sure there’s plenty of people who don’t bother even 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 physio 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 is almost impossible, and extra precautions means we often miss out on things that we’ve been looking forward to. It’s heartbreaking to watch a little one 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 tanbark that are stabbing into her hands, as she tries to keep up with the little boy who is half her age, as she watches him do it so effortlessly.

Having said that, almost every time I walk past a new mum 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, or 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, that I’ve just detailed above, on somebody else? It’s because the “good” stuff far outweighs the “bad stuff”.

She’s 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 straw. Last week she blew into the recorder by herself for the very first time – three months after her first unsuccessful attempt. She’s almost mastered her trike that she’s been trying to ride almost daily for six months. She has been trying to stand independently for about six months now too, 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 instead walk towards me to wrap her little arms around my neck for a cuddle instead of standing there, putting 120% effort in to hold her balance for longer than yesterday. We’re celebrating progress and achievements every single day in our house, and watching her work so hard to do what she wants to do makes the whole family so proud of her. It’s all worth the wait, and it feels that little bit more special when she finally achieves what she’s been trying so very hard to do.

She’s recently started daycare. I watch the other children who are the same as her interact with her. “Is Millie a baby?” I hear the educators’ answers and explanations: “No, Millie’s not a baby. She’s two 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 to 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 I 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 I’ll find myself standing and chatting for an hour. It’s like a secret society, and if you know the handshake, you’re in.

When Millie learned to put a spoon to her mouth and actually put food in it, we celebrated like she’d just climbed Kosciusko. I can’t even 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 mums and dads, brothers and sisters, best friends, therapists, counsellors, nutritionists, advocates, and fighters, all thanks to our precious little people with Down syndrome.

There’s the things that feel so much more rewarding when they are finally achieved; the sheer effort that a child with low tone needs to contribute to reach that goal we’re working towards. The cost of therapy and time invested support her mastering that skill; a skill that her brothers did as an automatic reflex at the same age.

It brings a specific type of bond you simply can’t have with a typical child. And it’s not necessarily better. It’s just different, and very, very rewarding.

I’ve watched my boys, with their tolerance and patience, develop into understanding young men – far more so than I ever anticipated. 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 that 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 that I’m hoping to see. It’s because I want every parent to be able to experience what we are 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 will meet will share every ounce of excitement over those tiny little wins. The five minutes of worry of that spot you’re convinced is due to leukaemia 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 that you’ve missed your best friend’s birthday dinner because your child has a cold, you’ll be interrupted by the snuffly toddler on the scooter running over your foot, and cry tears of joy that it happened.

So to the parent that asked that question about what the future holds, and how it will change your life – here is your answer. 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.”