Someone said these words to me today. At first I found myself blubbering about how wonderful Nathan is and everything I’ve learned through him. I was trying to justify why my life is so wonderful. Sure sure she said. Humoring me. Deep down she felt she knew “the truth”, no matter what I said.
After a little while I was angry. How dare she.
Then after a while longer I felt sad for her. In fact I just felt plain said. I realized that that’s probably what most people think when they look at us, at our life. Poor little boy, he is so handicapped. Poor them, they have to live with a severely disabled child who can’t walk or talk. It’s what I would’ve thought before I had Nathan. Just like most everyone else, I was so ignorant about this life, this situation. And I realized that’s what people think when we’re walking down the mall and they look at him and look away. Pity.
How sad.
I don’t claim that my life is better than yours. I don’t claim that my life is better than anyone’s. I don’t claim that having a handicapped child is better, or worse, or special. It’s just my life.
But what I will say is that although initially unwanted and unexpected, this life is far better than anything I could’ve dreamed of for myself. Before Nathan I dreamed of having a successful career, lots of money, a brood of brilliant happy kids, lots of traveling. Yes I wanted to be a good person and do good for the world, but that came after my other dreams and priorities mentioned above. If I had time.
Today I want more than anything to be a good person. My biggest wish is to see my family happy. And my 2nd biggest wish is to help others. I don’t care for money, or career, or traveling, or success. I understand that happiness is a state of mind and comes from the simplest feelings of gratitude and appreciation.
Today I understand the value of simple pleasures. Of being happy just because. Of not needing external things to be happy. Of deep acceptance. And I find that the acceptance that my son has taught me is starting to extend outwards, to other people in my life. My life has changed significantly in the last 3.5 years, thanks to my son. I feel truly, completely, and fully blessed for the changes that my son has brought to my life.
I could sit here and feel pity for others who haven’t had these opportunities. Who don’t understand the things I’ve learned so deeply. Who can’t experience the joy of simple acceptance, of being grateful just because your child is alive, of not stressing over minute, unimportant issues.
But I don’t. I don’t judge. I don’t feel my life is better than yours. I don’t feel my life is worse than yours. I just feel grateful for the life I have.
But I know it’s ignorance that makes people think that way. I know it’s because they haven’t walked in my shoes. I know it’s because society has taught us to value normalcy, to value success, independence, money. It makes me sad. So very sad.
Because, truly, fully and completely – I wouldn’t trade a moment of my life with Nathan. I do feel like the luckiest person in the world, how did I get so fortunate to have such a pure, beautiful, angelic soul in my life. A little person who teaches me everything by doing nothing. But I’m sure every mother feels this way about their child. So maybe my experience is not different to anyone’s. Except I can say that I have learned what is truly valuable in life, and don’t waste time stressing over unimportant things, the things most people stress about.
Yes, I fight for him. I fight to keep him healthy. I fight to keep him strong. I fight to give him opportunities for a bit of freedom and independence. I used to fight because I wanted more “normalcy” for him. But now I fight to keep him healthy, to keep him strong, to keep him happy. Because I want him here with me for as long as I can possibly have him. Not because I want him to be like everyone else. But he has taught me to accept, so I treasure every moment that he IS here with me, in the here and now.
I really really don’t envy your life. I don’t envy anyone’s life. I truly deeply love my own. I don’t want you to envy my life either. I just want you to be happy in your life and let me be happy in mine.