Disclaimer: This piece is based solely on my own personal experience of raising my daughter Emma-Noelle, born with Trisomy 21 or commonly known as Down Syndrome.
Every now and then I get ‘well-meaning’ people say the darnest things to me.
I know they are trying to be nice. But whether it is because I hear these ‘compliments’ all the time or because they are just not the life that I am living as a mother of a child with special needs, these compliments at best make me cringe inward and frown in annoyance.
#1 Children with Down Syndrome are a gift from God
Although not untrue but wow! And here I thought that ALL children are a gift from God. And must you say it in the presence of my other children? And don’t you think making this remark puts special children on a pedestal that further emphasize their difference from their peers?
#2 She is so happy all the time!
Yes, true. Emma is pretty happy most times. But she is also as happy, or sad as ANY of her siblings. Although people with Down Syndrome are happier by nature, Emma have her own personality and can get mad as hell, throw tantrums or sulk when she don’t get her way.
#3 She hardly looks like she had Down Syndrome!
Hmmm? Yes she does. No doubt Emma has a mixture of her father’s and my features but she has all the ‘classic’ features of Down Syndrome especially the low set ears and the lack of nose bridge. But saying that she doesn’t look like she had Down Syndrome is a blatant lie. Because there is a difference in saying she doesn’t look like she had DS and that you didn’t notice her Down Syndrome.
#4 It will be like having a little kid living with you forever!
No, that is totally not true. People with Down Syndrome have life experiences, they learn, fall in love, do anything other adults do, and may even do ultra-significant stuff that can change the world! And like her siblings, I want Emma to grow up, live an independent adult life and contribute positively to society. And she will be.
#5 You are so strong! I could never do what you do!
This really pisses me off. First off, how do you know you could not do this? You don’t know what you can handle until it is put in front of you as though your life depends on it. I totally freaked when I found out about Emma’s condition. But after much thoughts and prayers, I decided to take up God’s challenge. And yes, every day is a different challenge. So really. I am a regular mom in a very irregular situation. Trust me, you will know what you can and can not do, when you accept that challenge. And you will be strong, with the occasional break-down-to-tears moment.
So yeah. People tend to say the darnest thing. I also understand most times, people don’t know what to say and are just trying to be nice. So as much as I cringe upon hearing these words, I would rather hear them than have people say nothing at all. Because keeping quiet about Emma’s condition really is not acknowledging her existence.
Don’t you think so?