I’m writing this week’s post for my Mom because when she’s stressed it’s easier for her to hide behind other people’s words.
A pipe burst in our kitchen last week. She made a lot of phone calls and sighed a lot and slammed the drawers more than usual and then there were plumbers and other people with hammers and chisels and drills and they were in and out of our house a lot and a lot of our kitchen lay on the floor and there wasn’t really space to eat. Also, I was sick last week so my Mom couldn’t get much writing or speaking prep done, which stresses her out because she’s a control freak about deadlines and commitments. And most things. It’s almost like she thinks her identity and worth are tied up in performance or achievement, which is weird because she’s always telling me that my identity and worth are tied up in Jesus. Maybe she just forgot for a bit because of all the driving around to do the washing in other people’s washing machines.
The thing is, I know she also worries about me. Which is another reason I thought I’d write to you today, because maybe if I explain some stuff to you, you’ll know what to do with me, and that will help my Mom not to be worried or sad. My Granny has been urging her to write a post like this so that people understand better, but my Mom’s been avoiding it because she feels as if people will think she’s obsessed, as in, yeah yeah, so your kid can’t see so well; get over it already.
But, well, since I’m the kid who can’t see so well, I understand better than most that this is not just like a pipe bursting in the kitchen. Once. And it’s a big hassle and the people come to fix it and then it’s over and there’s a story to tell. This is like the pipe leaking every day. Your whole life. And you keep mopping with extra absorptive towels and that can feel like a win, but you can’t actually ever get away from the fact that the pipe will always leak.
My Mom asked me what I would want the world to know about visual impairment, so here’s my low down on low vision.
1. Don’t feel sorry for me. Or for my Mom, Dad and brother. It’s ridiculous how much fun we have together. I’m sure it’s not even fair. We’re not pessimists, defeatists or victims. In fact we can be irritatingly optimistic about most things. But understand that as much as we know that God’s grace is enough for us, have the grace never to tell us to just get over it already.
2. I can’t see far. I can’t see clearly. I don’t have depth perception or peripheral vision. If you had to put numbers to that, I’ve got about 5% vision for everything five metres and beyond. I’ve got about 50% vision for anything ten centimetres from my face. (I have 20-20 for seeing when my Mom is stressed.) The mantra in our house is ‘I Can See Perfectly’ – which stands for Illumination, Contrast, Size and Prayer. Because these are all the things that help me see as well as possible. So ironically, even though it’s 384,400 km away, I can spot the full moon in the night sky.
3. I’m different, not weird. The world happens to me in ways it doesn’t happen to you. I’m constantly maxing out my other senses, which takes physical, emotional and intellectual energy, so I’m flat-out exhausted by the end of the day. I’m mostly filtering out noises I don’t need, and zoning in on those I do. Oh, and smells are a huge distraction. But I’m seven so I laugh when people fart, because, of course. I think, reason and react differently from you too. Because where things appear obvious and immediate to you and your brain makes a simple, straight path, I have less available data so my brain takes detours to interpret things. I compose soundtracks for all my games and sing way too loud. Sorry. It’s just a way for me to fill in the blanks. That’s also why I move a lot. It helps me feel and know where I am in space – which is somehow linked to who I am in space. It’s called proprioception or something like that.
4. I can’t read social cues. When I stand still and put out my hand to shake yours and pretend to look you in the eye it’s because my folks have beaten that into me shown me how to do that, because I can’t just notice that stuff on my own. I’ve heard that 96% of what kids learn in the first year of life is learned through vision. So if you think my Mom talks a lot in public? You should hear the running commentary at home. And like, I’m learning about not squirming in my seat during chapel and not watching the lights on the ceiling reflect through my glasses, because apparently no one else around me is doing that, so it looks weird. Good to know.
5. It helps if you use my name when you talk to me, so I know that you’re talking to me. (And unless you’re a regular part of my world, you may need to remind me who you are, to save me sorting through my brain’s Known and Unknown Voices Database.) It also helps if you remember that I’m not hard of hearing or particularly stupid. So it’s not necessary to talk super loud or super slow. Unless we’re late for school and you’re my Dad because then he says super loud and super slow: Get. In. The. Car. (I think he’s also stressed. Maybe.)
6. I’m not a loser with no friends. I’m actually gregarious, funny, generous, brave, confident and pretty fascinating to talk to, if that’s your thing, because my vocabulary realised that it had better do all the developing to try and make up for my eyes. I completely love it when grownups let me ask hundreds of questions about mesmerizing subjects, like quantum physics, but I get that it can be annoying after a while. Mostly, I’m just very much a seven-year-old, but it’s hard for me to play with other seven-year-olds because they go so fast. And at school they all look the same. (Clothing cues help me a lot.) I’m not good with balls because I can’t see them coming at me, and I’ve got the whole eye-hand-foot dis-coordination thing going on. But I do play soccer in the garden with my mom, because even though she can see, she’s also got the eye-hand-foot dis-coordination thing. I love running, swimming and riding my bike. Less hazardous. My best is Lego, box construction, playing piano with my Nanna, making up fantastical stories, and listening to audiobooks.
7. Lastly, God’s got this thing. Some days I get so frustrated, so sad, so overwhelmed. Some days it’s easy for me to sort through the emotions. Some days I just sob, yell at my mom, kick my school bag, or punch my best wing man Scott. But mostly I’m strangely, supernaturally at peace. Joyful. Hopeful. Really pleased to be alive. I live eagerly and expectantly, because I’m never alone.
Thanks for letting me pseudo-hang out in this space today.
PS: This is me with my Freedom Scientific Onyx HD (which is why we just call him Kevin). Kevin has opened up whole new worlds. I was drying dishes after breakfast last Saturday and dropped a mug on my toe. How awesome is that blood?! I had no idea!
I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.
. . .
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Thank you for this post. I have enjoyed reading it very much because you wrote about things that really matter. I just wanted to let you know that I am keeping this post forever, and I am going to send it to everyone I know so that they can also understand and see the things you see and understand about life. Because this post is about much more than how to treat partially sighted people – it’s about how people should be treating each other.
I do hope your mom let’s you write on her blog again. Reading stuff like this early on a Monday morning gets my thoughts focused on Jesus and how He sees people, and that’s always a good thing.
Thanks so much Louise! Every strength and blessing to you! x
Thanks so much Cam for your letter which makes us
understand more about partially-sighted people. We, too are sometime in the future, going to be entering the
same way of life. The verse with the letter gave me much encouragement. We love you very much.
lots of love, Judy xx
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Thanks so much! Much love!
Cameron . thank you for sharing so much of yourself in this. Your family is so talented and your mom and dad both have such a sense of fun and faith and family. This post is so special that I am sharing it with all my friends. It is so useful for those of us whose parents have low vision too. I think we all need to be aware of how people are different but the same too and simply need others to be aware of how to give those cues! Simply brilliant and moving and I just want to keep reading
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Oh yay, thanks dearest Terry xxx
thank you and your son sharing your amazing store. I have a Vi daughter and this brings so much hope and perspective and it’s what iv wanted to shout at others but haven’t had the strength too. Thank you.
Thanks for sharing Karin… Alongside! Dalene
You won’t know me but your mom used to teach me a long time ago. She’s s wonderful person and very much a part of the reason that I am who I am today. But this response is not for your mom but for you.
To tell you a little about myself, I have a pretty cool genetic disorder that I was born with. It’s called ectodermal dysplasia. I also am hard of hearing so I have hearing aids to help in my daily life. My glasses are also like the bottom of coke bottles, but probably know where near as thick as yours. But enough of that.
Your bravery and desire for life are phenomenal. Truly inspiring. I know what it’s like to be different from the othet kids in your class and have a mum who’s stressed about
how you’re going to manage. But somehow each and every day you just do. And not only do you manage but excel. You learn that the things that make you different from everybody else, actually in fact make you different from everybody else. They make you stronger and more empathetic. They make you interesting and unique. They give you a perspective of life that no one else will ever have the privilege of seeing. So maybe you have 5% vision of distances, but the reality is you’ll see so much more than almost everyone you ever meet.
I’m really glad that I read your delightful post. It brought a huge grin to my face and you definitely shared some of your light with me this morning. Master Reyburn, I have a gift for spotting incredibly talented people; one of the perks of being a teacher. Your talent is going to take you as far as your imagination will let you go. Just keep being who you are, because
he seems to be a wonderful human being.
Wishing you nothing but the best,
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Thanks so much Jason! So wonderful to hear from you! Much love!!!
Aaaah I loved this. Such a great read! Thanks Cameron!
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Yay, thanks dear friend 🙂
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Sjoe! Tears. Thank you for this brave post. Bith of you. Xxx
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Thanks so much 🙂 x
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