Sometimes late at night when the kids are sleeping, I will go and sit on the floor next to their bed and watch them sleep. It is at that moment where they are the most peaceful. There is no arguing, crying or talking back. Just the look of an angel, sleeping peacefully.
It is at these moments when my mind starts to wonder. What do they dream of? What does the future hold for them? And lately, I feel really cheated of the dreams that I had for them. The dream for my daughter to be a little girl and run around with friends and do fun things. Now, the reality is taking care of her brother. She does not get to run around with friends since she can’t have play dates at our house and it is hard to make other things work. If she wants to go somewhere, we have to judge if Nathan can handle it. Try telling a 10 year old that she can’t do something due to the fact that it “might” upset her brother. We get a lot of “life’s not fair, or it is always about Nathan or it feels like you love him more”. And you know what the worst part is? I can completely see her point. Life is not fair, It does seem to be always about Nathan, but it has to be right now and there is NO way I could possibly love her more. But how do I get her to know that?
When Nathan sleeps, the sadness seeps in deeper. My dream for him to do the things that all of the other kids his age are doing. There are certain things that are a right of passage for a child. He should be able to ride a bike, read a story, swim in a pool, cross the street without me freaking out. These are all things that I think people take for granted, but when I see other kids doing them it hurts my heart, since I know Nathan can’t and won’t be able to do those things. I have and am still grieving for him. I grieve for the loss of his childhood that he doesn’t even know that he has missed out on, and I grieve for the dreams that we had for him. I have never said, “Oh my kids are going to be doctors or lawyers”. I have always said that I want my kids to do what makes them happy. I do not care what profession that is as long as they are happy, But I don’t ever want them to have a job that is only what they can do. I worry about that with Nathan. What challenges will he face with his vision? Will he be able to have a job? Will he meet someone who will love him? WIll he be able to live on his own? Where will he live when Jay and I are gone?
I don’t have the answers, and will never have the answers, but I have all the questions in the world. So for now, I will continue to watch them sleep and pray that they will find their way in this world.
Nathan's Batten Battle 