I walked out of the bathroom freshly dressed in the version of my “mummy uniform” that I reserve for leaving the house and I discovered my husband, wearing an almost identical outfit.
Yep, we have become that couple. Somewhere along the line, we merged our wardrobe and now we look like Wally and Wilma.
I laughed and suggested that maybe one of us should change. My husband has a better sense of humour, and suggested instead we dress our daughter in a pair of jeans and a stripy top too. On a whim I figured “why not” and we headed out to the party all in stripes and jeans – and in the process, discovered something wonderful.
My daughter, Koko, is almost two. She is funny, bright and determined and she is also DeafBlind due to CHARGE syndrome and wears a Cochlear Implant and a hearing aid. One of her eyes turns in slightly because she has minimal sight through it. Her better eye doesn’t have terrific sight either, but enough to recognise people and other toddler essentials like pictures of ducks and sheep.
I can say with all honesty that I love these things about her. I find them truly beautiful. If I could take away how hard she has to work to access basic things others take for granted I would do so in a heartbeat, but I also know that the radiant spirit that is my daughter is because of how hard she works. Her persistence and her joy in the face of frustration are awe-inspiring.
I am also a realist, and I know that when others meet her for the first time, they can’t know all of that about her. With a lot of hard work, Koko has become a kid who really enjoys meeting new people. She is friendly and curious and wants to interact. She is also a brand-new person learning about the world through the way that it treats her. I also know that most people are friendly and curious and try to be kind when they meet new people.
This usually involves them using an “ice-breaker”, which due to social pressures usually involves them asking a question about something obvious. As a result, we get a lot of “Oh, is she deaf?” pointing at the Cochlear Implant or “why does her eye do that?” And then there is the most awful of all questions, that every person who knows someone with special needs shudders when they hear: “What’s wrong with her?”
Over time, I have gotten stronger at countering these comments or redirecting them, but as my daughter gets older I have become acutely aware of how this is likely to impact her sense of self. Hearing over and over again about how different she is and having those differences pointed out is never going to make her feel included.
I also know that the people who make these comments are not making them to be cruel. They aren’t setting out to upset my daughter, if anything, they are trying to demonstrate how interested they are about her. They are trying to extend an arm of friendship. They honestly just don’t know what to say and end up stumbling upon something that is new to them.
After about 30 minutes of arriving at the party in our matchy-matchy “Where’s Wally” family look, I realised no one had opened their conversation with us by asking about Koko’s differences. Instead, they enjoyed pointing out that our outfits all matched and asking if we had planed it that way.
Don’t get me wrong. We LOVE our daughter’s cochlear implant. We will sing its praises until the cows come home. But I do worry about how my daughter will feel about it if it’s constantly pointed out as the first thing everybody notices about her. I hope that we are helping her to embrace her differences enough that she will wear it loud and proud her whole life. But I also know that most kids just want to fit in. The topic of conversation did of course come up, but for most people our matching outfits were enough to get the conversation rolling and get to know some new people without my daughter needing to serve as the ice-breaker.
Now most days when we are out and about, Koko, my husband and I are rocking some kind of matchy-matchy outfit. We still never have a problem answering genuine questions about the incredible technology that has given our daughter hearing.
But the good rule of thumb to keep in mind when dealing with any body is human first: Treat them as you wish to be treated, relate to the person, not to their differences.
I know that one day Koko will need to fight these battles for herself, but for now, if all it takes is co-ordinating some outfits to supply new friends with some small talk, as long as Koko is happy “twinning” we will be a matchy-matchy family. It will be interesting to see what happens when Koko is old enough to pick the outfits.
Holly is a qualified children’s educator with an alternative education background. She lives with her husband and 2 year-old daughter in a small apartment bursting with love and more clutter than she’d like. Holly has learned a lot about the world of disability, early-intervention and education first hand while parenting her vivacious daughter, Koko, who is DeafBlind due to CHARGE syndrome. You can follow their journey on Instagram and Facebook @hollyetkoko