How I’ve Changed My Perspective

I’m not sure a talk has ever changed my perspective or opened my mind so much as Kathy Snow’s presentation last week. Kathy Snow is an advocate for people with disabilities and she speaks around the country. I’ve been thinking about her words every day and been trying to figure out what to convey here. I decided that I don’t want to try and re-explain her ideas so much as encourage you to visit her website- – and definitely go see her speak if you get the chance.

Kathy Snow taught me to see Lydia differently. She is currently asleep in my arms. As I look down on her sweet sleeping face, I am quietly talking to her . . .

Lydia, I owe you an apology.

I’ve been thinking of your life as a tragedy. I’ve been feeling sorry for our little family. I’ve imagined hundreds of times all the things you won’t be able to do over your lifetime. I’ve been depressed that you might not ever walk or feed yourself. I’ve sat and cried thinking of your inability to be like other babies, sulked over toys you won’t respond to, been embarrassed when people see you have seizures. I’ve told strangers that you have medical problems before I’ve told them your name. The truth is, I’ve brutally smothered you in a grim imagined future and spat animosity at your every flaw. Ultimately I’ve put everything but you first. Your symptoms have seemed like the most important thing about you and about me for the last six months. I’ve been utterly self-centered. And I’m so sorry.

I just didn’t understand before. I’m glad you are young and that there is time for me to change my perspective before you learn to see yourself as needing a disclaimer or learn to feel like your whole life is flawed. You are such a gentle and precious person and all I want to do is celebrate you. I never want you to feel like you are anything but absolutely perfect. Your struggles may be greater than most, but you are capable of living a full and wonderful life, however brief, because these challenges do not diminish the spirit of your character or the value of who you are. Thank you for giving me the chance to know you and to love you.

Who wouldn’t be harmed by having their parents think so negatively about their lives? If your parents imagined daily all the things you would never do or accomplish? Or became depressed that you have a medical condition, been angry that you couldn’t do something, or were embarrassed by something you couldn’t control? You would feel flawed. Worthless. It makes me feel ill to think she’d ever feel worthless. Or that her brother would learn to resent her for causing me heartache. So I’ve got to stop being so grim about this. About her life. About her. You’ll notice I changed the subtitle of this blog. She’s not my “special needs daughter” anymore. Her needs don’t come first. She does! (I might even take off “with disabilities” someday). It is not about ‘being PC,’ It’s about respect for people. Can you imagine how damaging it would be to be referred to as your condition all your life? Like, here is my cancerous son. That would make any kid feel about as valuable as, well, cancer. But don’t worry about messing up and saying the wrong thing, I know I probably will a lot. Luckily Lydia is here to teach us to be better, to try harder. And luckily she is very patient.