Sometimes if I’m out without the kids I’ll end up striking conversation with strangers. Often the topic will turn to our children and I’ll be asked how many children I have. Proudly I say I have a 4.5 year old, and a 10 month old. Then we start talking about our children, how fun they are, how they keep our lives interesting, etc.
I’ll complete entire conversations like this one, and talk about how much Nathan loves to ride his bike, how addicted he is to TV, how much he loves his sister, how he absolutely loves Disney….I tell them the truth about him. But I will not tell them that Nathan is disabled.
For example. A couple of years ago Owen and I went on a cruise for a weekend. Nathan stayed with my mom. We were assigned a table with a few other couples, so every night at dinner we would all talk, and invariably the conversation would be steered towards our children. We all shared stories about our kids, how wonderful they are, all the little things they do. Owen and I talked about Nathan, but we didn’t feel it was appropriate to tell these strangers that Nathan has a physical impairment. Our intention was never to lie – we never lied as we told them all about Nathan’s personality. But how do you explain to strangers at a dinner table that even though your child can’t do what their kids can, he is amazing and inspiring and wonderful and beautiful and sooo happy and sooo full of love? How can you tell them that even though they can never imagine being happy in a similar situation, that you love your life with your child, and wouldn’t change him for anything? And is it worth the effort, given that it will be a passing interaction, and you will probably never see these people again?
I find it almost impossible to tell people I’ve barely met about Nathan’s disability. Not because I am ashamed, but because I don’t feel I can explain the magnitude of the joy of our lives with Nathan. I can’t, in a few words, explain how much happiness Nathan has brought into our lives, how much we love him, how much he has taught us, how much sheer fun he is.
Even when I try, people think I am in denial or lying, so the obvious typical response is pity. And it’s very difficult to convince people who know us not to feel pity – so how do you convince a stranger?
So I don’t tell them about Nathan’s disability. I tell them about Nathan, but I leave that part out. And it feels like a dirty little secret. It makes me feel terrible not to say it because it is a huge part of who Nathan is. Nathan’s disability has defined our lives, has made us who we are today – in a good way. So why hide something that has brought so much goodness, growth, and happiness?
But how do you get people to understand? And is it appropriate conversation for virtual strangers? Is it something they NEED to know about Nathan, about us?
I would love to know what you think!
I do the same thing, but I guess that growing up with a sister who had a medical condition too, makes me not feel guilty about leaving that sort of information out. (Also, my son doesn’t have a diagnosis which makes explanations, if I wanted to give them, difficult. Developmentally he is from 0 to about 6 months-old.)
The way I figure, yes, his medical condition affects us, but it does not define him. Hopefully, by speaking of the qualities that DO define him (hardworking, funny, clever, Elmo-obsessed, etc.) to other people, those people and, by osmosis, my son (who I always assume is listening) come away with a positive and more accurate image! 🙂
We’ve been fortunate to rarely encounter pity and ,when so, not for long. 🙂
I hear ya! I hate the pity. It is very hard to get people to understand how much joy our kids bring to our lives! Yes there is frustration and desire to give our kids the best life they can have but pity is not necessary!
I made a business card for Makenzie that tells a bit about her with the link to her website. When people ask I can give them the short story and tell them they can read more about our journey on her website. That usually works!
It is not a secret. You see your son for the beautiful child that he is. There is no lie there!
I do the same thing with Alli. Don’t feel bad about it, it is no ones business. I hate the pity look as well, I have told people not to look at me that way because Alli is a gift from God. I have noticed that once people find out that Alli is diabled they avoid me. I just think they don’t know what to say and don’t know how to feel. But the string friends and family make up for the weak ones. Congrats on baby #3! you are in my thoughts and prayers!
I don’t pity- though Hannah and Zach both tell me I stare. I wonder- I troubleshoot- I bite back a gabillion questions….but…no pity…..unless the kid is screaming–then I feel bad for the mom
and besides- isn’t anybody’s business ….
I don’t feel like I ever HAVE to tell anyone. Charlie is still such an under-the-radar kid that I sometimes have to tell people that are around him, but that’s only to explain why he doesn’t walk or talk. Disability is just a piece of Nathan and not one you should ever feel like you have to disclose–it’s about convenience, not pride (or so I think).
I have a child with CP – but I don’t ever tell anyone that she has it. My reasoning? we don’t walk into a party or a room full of people and announce that we have diabetes or a heart condition etc. so why should we ‘label’ our kids? They are our kids, beautiful and loving… rest easy – you don’t have to qualify anything…. we have a loving little kid….. which is the truth, no explanations needed!
Nathan is so much more than his disability and it is natural not to want people to distil him down to what he is not able to do. He is amazing and beautiful and so smart!! Maybe it is not in “NOT” telling people, but finding a way to tell them that will help them be inspired by his life. Breaking down prejudices takes time and most prejuices are built in those who don’t know anyone who is gifted or challenged in various ways. There are so many amazing people out there who have the potential of making each one of our lives more rich if we just are willing to open our hearts to them!!!