I saw you today.
Everyone was staring at you caring for your child. Sitting so close to his well-positioned wheelchair, you kissed his forehead, wiped his face, kept him calm and held him tight when he became anxious.
I see your sleep deprived face. While your wait becomes longer you close your tired eyes to steal a moment of peace.
It was then that I tried to look in and imagine what it’s like.
I want to help, but how? I am just a stranger. I can see you read my concerned look as pity. But it’s not pity. It’s admiration.
So his hair was scruffy. So what if he had holes in his pants? So his hems are torn and the worn out wheelchair had tape holding parts together. The love is genuine. You demonstrate it with every move; an awareness that is like a sixth sense. You know who’s watching you both. How late the doctor is, who arrived before you and who arrived after you. You are hyperaware, because you have to be.
You are a protective angel over your precious jewel. Minimizing harm wherever possible is second nature to you and conducted with ease and grace.
Your child smiles looking into your eyes and whispers, “I love you mum,” with adoration. Your face lights up with joy. Those sweet words puncture warmth into the coldest of hearts.
A waiting room full of people overheard and tried not to smile. They pretended they didn’t hear and tried not to appear moved by this magnificent show of emotion, to be polite of course.
No one’s life is simple, and it’s all relative. We all struggle. The key to thriving as opposed to surviving is how we handle it.
Special needs parents have to handle it. They never feel like what they do is good enough. No one else could possibly understand what is involved and how each day is unpredictable.
But they do handle it. And we need to remind them that they are not just handling it, but they are nailing it! They need to hear it.
I wish I could have told you that. But I am a shy stranger that doesn’t wish to impose. So, I wrote this to you instead. This message is to all the mums and dads I didn’t have the nerve to say this too:
You are a beautiful human being.
I kind of know what it’s like, you are not alone in this.
Stay hopeful and hang on to every little win.
Always trust your instincts.
And of course – totally lower that bar of ridiculous expectations – life gets easier then.
It works for me.
It’s not spoken of, but us special needs mums are often too afraid to talk to each other. There are no smiles or acknowledging glances as might be expected. We are already up to our neck with our own issues and cannot bear to watch another child suffer. We fear that our child may be doing it easier or worse than they are. We feel a bit guilty for advocating so strongly when our child is more mobile or less fragile than another. It’s a bitter-sweet pill to hear when someone’s child is more mobile and gets their wheelchair first from the government.
We should be united in this fight for our children to thrive. Instead, we look away and do our best to avoid the dreaded eye contact.
Next time you see a special needs mum, would it hurt any of us to smile at each other and say, “You’re nailing it!”? That’s my new pact from now on and let’s make it together. Who knows, you might make someone’s day.
That’s the worst that can happen … right?
Yael Cohn is a mother of two boys, youngest boy Maxi is seriously ill with an undiagnosed genetic neurologic metabolic condition. Yael is an advocate and cared for her son, she has spent the past four years searching for a diagnosis. https://whatswrongwithmaxi.com