I was going to post a bunch of pictures today and talk about my wonderful Father’s Day with my family, but that’s getting put on hold for a day. I might get around to it tonight even, but I want to talk about something more pressing on my mind than a good ol’ time. I’m going to talk about something uncomfortable. If you get offended, I’m sorry, but it must be said. I only ask that if you keep on reading, hear me out and give it some thought.
As I was catching up on all the special needs blogs I read, I came across one that struck me in the heart. It talks about the different reactions that children and adults have when they encounter someone with special needs. Check it out, either right now or when you’re done here. And I have to say: I am not proud of how I, myself, used to think and act.
Jessica and I help teach a special needs Bible study for our church, called Jesus Cares. (Less so since we had Namine, but we still try to go when we can.) But it wasn’t always this way; it was Jessica’s encouragement and positive influence on me that moved me to help. I used to go with her, but only because she asked me to. I refused to help; I just sat there, waiting for the class to be done so we could go home. I was uncomfortable. I didn’t like talking to them – whether I could understand them or not. I am still ashamed of myself when I think back to those times, and I hate myself all the more for them.
You might think, Why even bring this up? No one has to know. That’s true. You’d never know if I didn’t tell you. But I think it’s important to recognize that this discomfort was there for me. Me, the brazen and bold advocate for my daughter that I am. I was not the hero my wife and daughter think me to be. Neither am I now, at least in my own eyes. But thanks to Jessica’s love and help, I was able to reach out past what is comfortable. I was, with her at my side, able to grow beyond just what I knew, and come to love those that I had not before. No, I am not proud of what I was. But I am proud of what I have become.
When Namine was little – okay, littler – still saddled with tubes and equipment, people were hesitant in approaching us, even in church. Sometimes, I thought, as if the trach was contagious. But I think it’s that discomfort with the unfamiliar. Trachs and vents and feeding tubes and loud equipment carried everywhere you go are not common, after all. Namine’s condition was rare – heck, it took her doctors two years just to come up with a name for it – and I think people didn’t know how to ask. Kids were always more blunt than the adults were. Now that Namine is free of her tubing, people are not as hesitant to approach us. Could it be that she looks more “normal” now? (It could also be that she is somewhat of a celebrity in our church; she has been prayed for and donated to by more people than we know!)
There is a fine line in talking to those with special needs, or their caregivers. I’m not sure precisely where it is, myself. Of course it wouldn’t be right to just go up and say, “Hey, what’s wrong with your kid?” But I do know that we didn’t like the feeling of stares and people talking about us or Namine without talking to us directly. We always appreciate being asked, though, and we’re always happy to talk about Namine. So ask. You won’t know until you educate yourself. Don’t be afraid; chances are the fear is on both sides, and with acceptance comes understanding. And, if you’re lucky, love.
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