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.
Very beautifully said.
I had a similar experience once where someone said they would never complain about their life after hearing about mine. After I went on and on about how beautiful and perfect Chloe is in my eyes, the person replied, “So you’re telling me you wouldn’t change things if you could?” in a very condescending manner.
I had almost identical feelings to what you expressed in this post.
It’s an unexpected life, but one in which we learn the true value of people, of accomplishments, of abilities, of possibilities… we learn in a way that others cannot the value of life and what really matters.
It’s not possible for them to understand. It took me awhile to understand it myself.
And so, they go on, pitying US, when in fact they’re the ones missing out.
It used to make me angry, but like you I’ve decided when I see those pitying stares, that I pity THEM, for missing out on the true beauty of life that I have come to know by being the parent of a special needs child.
BRAVO!
Marcela, I have felt every single thing you said in your beautiful post. Although I sometimes feel sad about what happened to Max, I think that I have the most amazing life with him, because he is an incredible kid. He has changed me in so many ways, as Nathan has changed yours. People think I’m just in denial, but I’m so not. I am PROUD. Thank you for this post.
What a beautiful post! I hate when people look at us that way and have the pity sound in their voice because, truly, I love my life and our little family. I don’t try and explain this to anyone who isn’t living it because they just won’t understand and it frustrates me.
My sister and I have played the you don’t get it game. One thing she said to me that I will never forget was she said ” You make raising a disabled kid easy, so I didn’t know it was hard.” They might not envy your life but at least they know you make it look easier than it is.
Keep you head up. Know you are a great person with a wonderful kiddo. Nope. we didn’t ask for them and we would take it away in a heart beat!
Great post!
AMAZING post! “A little person that teaches me everything by doing nothing” How true. These little guys are special beyond words aren’t they!!! Thanks for sharing this. I needed it today.
Laura G
ps Loved the pic of Nathan and Owen too. You can totally tell he loves his daddy.
Marcela, WELL SAID!! What a beautiful post. Luke is turning 3 soon and I have felt more at peace lately than ever before for many of the same reasons you expressed here. Take care
Cheryl P
Rock On!!! I also hate when people look at me or Little Man with pity. He has a purpose here in this world. I usually pity other people who can’t see pure love, joy & acceptance in. He’s the closest thing to an angel my family has. He has no concept of hate, envy, anger & all the other ugly stuff that comes with being human. I am blessed to have such an example in my life:)
ok, rant over, off my soapbox….lol!
Que orgulloso me siento de ser tu padre.
Dad
Hey, Marcela. Thank you so much for writing this piece. It was so beautiful. This morning is the first time I’ve looked at other blogs, an dI’m so glad I did! I wrote an entry on my blog about your entry, if you would like to read it…
http://carlyandjay.wordpress.com/2010/02/27/i-dont-envy-your-life/
Thank you!! 🙂
Wow! I love this post. I think many people out their need to read this.
Gina
Marcela,
Well done! So true.
People are so clueless. When at the beach this summer my husband strolled Christopher on and off the beach with Ryan and I following behind. He was so upset by most peoples reactions. They would sigh or say poor kid. THEY looked so pathetic. I looked at these people and said… I am blessed, stop staring at my child! Believe me he is obviously happier than you are. He has taught us more about love and life than anyone. I just then smile and walk away.
Lisa
Marcela,
Beautifully said! It amazes me how clueless and ignorant some people can be. I can’t imagine what my life would be without Casey.
Beautifully expressed. And I do know exactly how you feel. One of my favorite quotes is by the author Wendell Berry, “We live the given life, not the planned.” I’m sure the woman had no intentions of offending you, but it was definitely an ignorant and insensitive comment. Your love for Nathan shines.
I love what you’ve shared. It’s perfect.
Perfectly written. Beautiful. I have also had this said to me and I could not have responded in a more eloquent way then you did. You are a beautiful, dedicated Mother and your son is so lucky. God bless all of you.
Michelle Hanna, mom to Noah and Jonah (24 week twin boys)
I wanted to respond to this earlier, but I was on my phone and it’s hard to type on that thing!
I feel the exact same way and I have people look at me with pity and I’m just CONFUSED. I mean, some people have real problems. We’re rarely sick, we feel good, we have a good time. Who cares if Charlie has some physical limitations? Everything else is just fine.
You have everything you dreamed of: a successful career, a brood of brilliant happy kids, lots of traveling. EVERYTHING!! Mostly you have “THE MOST PERFECT KID” anybody could dream of. Your life is not perfect, neither anybody else’s. I’m very thankful I have you, your brothers, Nathan and Belle in my life. All of you make “my life” perfect. I, as you , also have everything I dreamed of, the most amazing children and grandchildren.
I feel sorry for people with typical kids because they don’t know the joy that we get to experience every day. Keep up the good work!
what beautiful words and sooo true………there is nothing more important in life than experiencing and living life with your child!!!they give meaning to our life .
WOW! I tried to express these same kinds of thoughts when I wrote an article for CP magazine this past winter. I’m glad that I hadn’t read this because I would have told them to publish it instead of my article. You can check out the article if your interested. Blessing of being a special needs parent
http://myspellingsucks.com/article-published-in-cerebral-palsy-magazine/
Apparently the above link isn’t working this is the direct URL.