He asked me the question I've been anticipating, dreading, since soon after he was born.
"Mommy, what happened to my eyes?"
I froze for a second. Then asked him to repeat what he had said. I wanted to be sure I had heard him correctly, but really, it bought me a few more seconds to think of my response and process what he had just said to me.
His question wasn't sad. It didn't carry the weight of the heaviness that I feel sometimes. It was a simple question that he simply wanted an answer to. It was a question full of curiosity, not pain.
I swallowed the knot in my throat and tried to figure out if Christian had actually asked me about his eyes or if I had misunderstood. You know those moments of panic where you suddenly have the ability to think 47 thoughts in a matter of five seconds. I was there.
|I don't think I could love this boy more|
As far as I can see things from my point of view, we are a normal family and Christian is a normal kid. This is our normal. Having a blind child with complex medical needs is not out of the ordinary for us. It's what we do. Every day. We wake up and it's there. We go to bed and it's there. We don't really give it extra thought. We handle it because it's what Christian needs, and as a parent, you just do for your children what they need. I've been tube feeding for over six years, so giving a tube feeding doesn't take anymore thought or effort from me than preparing Chandler his lunch. Christian's needs are just second nature to us at this point.
I worried that making a fuss over Christian's condition or differences would indicate to him that something was "wrong" with him. If they are worth making a fuss over, then I figured that would clue Christian in that there was some big deal to fuss over. I never want Christian to think he is defective, because he isn't. He is different and we are okay with that, so we speak matter-of-factly about his differences when issues arise. "Christian is blind" is about the same to us as saying "Christian has blonde hair." It's just a fact. There is no negative implication to it. So, that's how we speak about it.
I had also planned years ago how I was going to respond when this day came, the day he figured out and asked me about his differences. I decided that I would be cool and calm, making sure that my voice conveyed my message of "no big deal" to Christian.
Sure, there are times when his differences are a little bit of a big deal, but in every day life, they really aren't important. What's important is Christian, his happiness, his quality of life, his education, his abilities, his progress, his health; but my fear was that if we made a fuss over the differences, if we pointed them out or acted like they mattered, then Christian would pick up on that. And by the same token, if we treated it as no big deal, then Christian would pick up on that, too.
"What did you say, Christian?" I asked him, leaning in to make sure I could hear every word above Chandler bouncing around and chatting.
He reached up to his face and touched near his eyes, "What happened to my eyes when I was born, Mommy?"
I don't believe that Christian just suddenly came to some realization that he is different in that moment and asked me about it. I don't think, still, that Christian now fully understands that he is different, or how. I sort of thought that it would happen suddenly; that one day he would go from not knowing to knowing. That isn't really how it's happening. He is picking up on things, slowly, and figuring it out piece by piece.
I think he has heard someone, probably me, say something about his difference. I think he has been churning it in his mind since he heard it, and at that moment, it came to the forefront of his thoughts, so he asked about it. I have recently done several phone interviews at home, and of course Christian is there with me, so I wonder if he didn't hear me talking about his eyes there, explaining to someone over the phone exactly what his condition is.
Christian is such a random kid. I can ask him if he's hungry and he will start telling me about our trip to the grocery store last week. Christian talks about whatever he's thinking about, not necessarily what's going on right at that moment, and not necessarily what everyone else is talking about at that moment. He processes the world in his own special way, and it might take days of replaying things over in his head before he has fully processed something. As he replays things he's heard or experienced, he will randomly talk about them. I usually know what he's talking about because I am usually with him, so I have a point of reference to carry on his random conversations as if they are totally normal. They really are normal. What six year old isn't random at times, right? Most people just don't have that point of reference like I do to carry on Christian's random conversations, and so they can't hold those conversations, although they are usually kind enough to try. It's sweet to see strangers ask Christian how he is, and when he answers that he has a pet fish, they smile and ask him to tell them more about that fish :)
So I began my answer, letting the words fall slowly as I chose each one carefully and purposefully. "Well, you were born with different eyes, Baby. But that's okay. I love your eyes just the way they are!" That's what came out of my mouth in that moment. I was okay with that answer. I hoped Christian would be. I held my breath waiting for a reply. I wondered if he would ask more questions, and he did.
"What is that?" he asked as he touched near his eye again, doing his version of pointing.
"That's your left eye," was my answer.
He moved his hand to "point" to his right eye, "What is that?"
Again, I said, " That's your right eye."
The conversation took a casual turn about something total unrelated (my random child) and I knew we were not going to be getting much deeper at this point. Christian asked how many eyes he had and then counted them. Then asked me how many nostrils he had. (Lol! Crazy kid!)
|Our "normal" family :)|
I've been waiting for this day for six years. I knew it would come. It wasn't as terrible as I thought it might be. I was scared that I wouldn't be able to give Christian an answer that he was okay with, or worse, I was afraid that when he asked me about his eyes, it would be because he was upset about them or had heard someone say something unkind about them.
I'm so thankful that his question was simple and unemotional. I'm thankful that he hasn't caught on to the notion that some people hold that his eyes are "bad." I'm thankful that I am getting a chance to give him his first impressions about his difference and make them positive and happy.
This parenting gig is a hard one, y'all. I am praying for grace and discernment to do it well! God is giving richly. <3