Embarrassing or infuriating?? Both.

This special needs journey has been entertaining. It has been scary. It has been educational. It has been down right depressing at times. It has been humerous.

All of these emotions have been present for a while, and we experience most of them daily.

It has also been embarrassing. But we got used to the dirty nappies at inoppertune times. We even got used to impolite stares and whispers. All of these moments have been embarrassing in a way, but we got over it and learned how to cope with them.

We have recently begun to deal with issues that were not present before. It is embarrassing, but it also reminds me of how uninformed people can be.

We attended my niece's birthday party and one of the moms told my sister that she was worried because my son would be attending. She was worried he would try something with one of the girls. Now, for those who don't know Jacques, that is just plain hilarious. It is funny because Jacques doesn't understand sexuality. And it is hilarious because he cannot even pee in a toilet yet, so what exactly would he do?

But it is a bit embarrassing, and a lot infuriating, because it is a preconceived idea (although completely unfounded) people have of people with intellectual disabilities.

I am however not mad at her as a person, I am mad at society. I am mad at false clichés people believe to be true. And I am saddened by this lie, because people lose out on the phenomenon that is Jacques.

Because that is what Jacques is: he is one in a million, in every sense of the phrase.

Medically, he is very complex. I challenge anyone to show me someone with exactly the same combination of medical complications as Jacques.

He is also the most devoted Christian I have ever seen. He spends most of his day watching church services and church music. He also asks us everyday, when will holy communion be served again. Show me one other 15 year old kid who has asked for holy communion in this lockdown period. 

His faith in God has helped me through this lockdown like nothing else. Because if he spends most of his time loving and praising God, who am I to feel depressed?

So my advice to my sister would be, share our story, as far and wide as you can. And I want to thank her, because she is one of only a few people who actually research Jacques' conditions to educate herself and other people. Estie, I love you❤️

We are lucky to be part of a few great groups on social media, where I get to share our story, but more importantly, I get the indispensable support and understanding we need so much.