IT'S WORLD DOWN SYNDROME DAY! ONE YEAR ON...

March 20, 2018

A year ago today we introduced emmysbrotherleo, a year ago we shared that Leo has T21 and a year ago we celebrated our first World Down Syndrome Day. So a year on what has changed? 

 

Firstly our blogs haven’t been as frequent (we know it’s been a while some would say busy some would say lazy), to be honest life is hectic raising two kids under three! 

 

I've been back at work for six months and Rod has taken over the daddy daycare reigns, this time a year ago we were only fifty days into this new journey, I probably thought at that time going back to work wouldn't be a possibility but through a lot of effort we have made a smooth transition.

 

The role reversals work for us, we had always planned on both taking parental leave and I have to hand it to Rod he is amazing with the kids and has way better patience than me. 

 

The adjustment to full time work and full time mum has been tiring at times, I’m very grateful my employer lets me work flexible hours, so it’s early starts and early finishes so I get to spend some quality time every afternoon/evening with the family. It also means I don’t get to switch off. Quality time in our house means exactly that, time with the family, we can all get distracted by technology but as parents we call each other out if we get lost in technology instead of our kids. 

 

As any parents would know, kids can be testing at times, Emmy is the perfect combo of Rod and I. Determined, stubborn, structured, free willed, happy and curious. Leo is exactly the same! 

 

I’m not sure what I expected Leo to be like at one year old, naively I probably imagined him to be “different”. But as I get home every afternoon Emmy races to the door and Leo crawls not far behind her.

 

At this point every day the “mummy guilt” hits, “mummy why do you work? I miss you” and Leo hugs so tight his mouth firmly attaches to my cheeks, but it’s not about me it’s about them so no down time it’s playtime. 

 

Leo dare I say is like “any typical one-year old“, he navigates through the house, plays with toys, pulls Charlie’s (our Labrador) ears, pulls himself up onto anything he can reach, plays with Emmy, we already hear “Leo No! I was playing with that!” as he knicks one of her toys and often we find him happily giggling to himself in his room.

 

We share a lot about his physio, mainly because it’s a big part of our daily life and we are super proud of his gross motor skill achievements but it’s really the simple things like playing with his sister, learning a new sound or just being a happy kid we are equally proud of. 

 

One year on from our first social media announcement I have to admit I sometimes now find it harder to tell people about Leo’s diagnosis, not because I’m embarrassed or sad but he is just Leo, we don’t define him by it. I don’t introduce Emmy as my “46er” so why do I need to explain Leo’s 47?

 

But we need to because it’s about awareness, inclusion and breaking down stereotypes. Rather than let people stare at him and give me a condolence grin, we endure and strive through conversations with strangers in hope that if their child or they themselves meet another T21 kid they wouldn’t  judge or awkwardly “grin” but just treat them equally.  

 

I proudly heard myself in response to work colleague who asked about my “special needs child” say...“he just has Down syndrome, no biggy, he is special cos he’s my son” 

 

So today 21st March is World Ds Day, a year has passed, we have had an amazing year and can’t wait to see what life springs on us this year. 

 

So celebrate today if you know Leo personally or just via our story, start a conversations to create awareness of Down syndrome , he is just a boy with a bit extra, that extra makes the world a better place.

 

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