OUR SON HAS DOWN SYNDROME...BUT WHO'S THE FIRST ACTUAL VICTIM?!

March 28, 2017

 

Eeny, Meeny, Miny, Moe!

 

So let's be clear from the start, we'd be hard pressed to find better family and friends than we already have. Which, in its own way, and in hindsight after having time to deal with the news ourselves, made it all the weirder for us to take some small amount of sadistic pleasure in singling them out as victims one by one when the time came to begin telling people the full picture about Leo.

 

This began around the two week mark, we were so lucky that that pesky heart concern got in the way (yes, I'm being sarcastic - 'lighthearted look at...' remember!) and bought us some time, and that in that time the DS diagnosis had been confirmed and allowed us to begin identifying the weak from the strong like a pride of lions hunting wildebeest on the Serengeti. 

 

By this time, our immediate family knew the whole story, so we began with friends who we knew would be nonplussed about it, and whilst there were still some moments of silence on the other end of the phone, it was seconds not minutes, the response was invariably 'my friends nephew has Down syndrome', or 'one of the girls at works daughter has Down syndrome' or something to that extent. it seemed everyone knew someone or had been touched by someone living with Down syndrome themselves.

 

Within a few days of receiving the DS confirmation we told wider family and friends, it sounds strange but the ability to deliver this news in a Facebook Messenger 'Family Group' that we have set up for my family was a godsend. It allowed us to control the message, and directly force those who were struggling a little more with the news to deal with it in their own time.

 

We'd wake every day and say to each other, 'Ok, who's today's victim' as we scrolled through our phones to re-read the text messages of support that we'd received previously in relation to Leo's heart. 'Today I'm telling Laura', 'Yeah I'm telling Megan'. And so we'd go about our business randomly calling friends and telling people what was happening, but more importantly for us it helped with two things - firstly, control the information & emotion and secondly, begin the education process of others.

 

 

The Responses!

 

Because we'd had such terrific information from the nursing staff and paediatrician in relation to what Down syndrome was and why it wasn't detected in Leo's case, we were able to effectively answer our family and friends questions and dispel some myths and clean up the inevitable trail of conversations that would occur around the dinner tables and BBQ's over the coming weeks. 

 

So we took bets on what types of responses we'd receive from those that we'd told. "Don't you get tested for that?", "Did you do the test for that?", 'What did the test results say?", "Were you high risk?" and so on but that's a whole other topic in itself.

 

But then we also had some atypical responses also, one mate saying 'yeah right, so when are we wetting the head?', another more concerned that the news we were going to deliver was that we were moving away, one friend also said 'WOW, bet you didn't see that coming?'.  

 

Ultimately each conversation is it's own situation, but from our experience, have a clear plan of attack, arm yourself with as much information as possible and most importantly invite debate to ensure that everyone knows that not only are you not afraid to talk about the elephant in the room, you're like a bad 80's rock band called 'Willing & Able'.

 

Share on Facebook
Share on Twitter
Please reload