By Jen Sarker
I never thought I would be in this place. I never thought I would be this person. I never thought it would happen to me.
These thoughts are common among parents whose child has just received a diagnosis. When you find out your child has Down Syndrome , autism, or a rare disease like my son Carter, many questions start coming to mind. You take it in, you process it, which can take days, months, even sometimes years. Then you begin living your life in the this “new normal” learning and adapting to various changes for the rest of your life.
You become an expert in their health condition. You learn to appreciate and celebrate the little victories your child has and does. You begin to see everything in a different light and focus on the things that truly matter because you have no other option.
But there are a few things I think parents of children with disabilities universally agree are not helpful to hear. Please stop telling us:
“God only gives you what you can handle.”
“I don’t know how you do it.”
“I could never do what you do.”
While we know you are trying to show support, it can simply backfire and piss us off. You don’t know how we do it — we don’t have a choice. You could never do what we do — trust me, you could and would if it was your child.
Here are other things you could say instead:
You are a fantastic parent! I admire your strength and unconditional love for your child.
Hey, I know I do not get your daily struggles, but I want you to know you’re amazing, and I see you.
Instead of making it about you, make it about them. Uplift them, tell them how terrific they are, how amazing their kiddos are, and that although you may not fully understand the day in and outs, you are inspired by them and their child’s story.
This article was originally published on The Mighty.
Jen is mum to Carter {aka C-Money} who was diagnosed with Sanfilippo Syndrome type A in May 2016. On top of this diagnosis C-Money also has chronic pancreatitis due to a rare CTRC gene mutation. You can follow their journey at http://carterschallenge.com/
