It's a funny thing when you have a child with issues like these who can't leave the house without a truck load of equipment and who, everyone knows, will never get better. People ask the same thing over and over. "Are you okay?" Funnier still is the reaction we parents are expected to give. "Yes, I'm fine!" and "there's a reason for everything", or "I was only given the challenge because I could handle it". Most people don't ask you this question expecting to hear the truth. My truth? My truth is that no, I'm not fine. I'm pissed off. I'm pissed off that my child is being given such a raw deal. I'm pissed off that he has the grace to except it and that I don't. I'm pissed off that I worry every day about him and I wonder relentlessly if he'll ever be able to live on his own, have a lover, travel somewhere fabulous, father a child, live in a dorm, kiss someone, and and...
I'm coming to understand that it's okay to not be fine. I am always fine when I'm wi

Here's the thing. I'll never be "okay" with this. I have, however, learned so much from this child and from this disease. I have learned patience, righteous anger, the true meaning of beauty, I have learned that I can be a kick-ass mom and that I have more strength than I ever though possible. That John is a fantastic father and that together, we can handle anything. I have come to understand that my son is incredible. He is the most adaptable being I have ever met and my heart bursts with pride when I think of how he has come to live with his ever-weakening body with acceptance, grace and with just enough of a stubborn streak to refuse to take this lying down.
Am I okay? No. Am I getting there. You bet your ass.
2 comments:
We learn so much from our children. There are days when something seems overwhelming and we wonder how we will ever get through, and then we look at them. We see their eyes. We see how they interact with the world, how they see the world. Sometimes, they leave us feeling weak in comparison to their strength, but in truth, they share that strength and we move on to another day.
YOU are so fucking awesome! And its ok to not be fine. You are my hero!
Post a Comment