I have been editing Norah's condition out of her pictures since she was a newborn.I didn't want people to think she was in pain, or that she was neglected or that I couldn't do anything for her, so I cleaned up all of the rashes and blotches and blood and tried my best to play it off as "rosey cheeks." I didn't want to remember her in pain.
Yesterday she was playing outside with the neighborhood kids and I heard one of the older boys refer to her as "ugly." The day I had been dreading was here. The beginning of little people verbally recognizing Norah's condition. Not just taken a back, not just staring, but calling it out and assigning it a name.
And what could I do??? She didn't hear him say it. But I know one day she will. And she may be hurt.
Every mother sees her beauty because we have that unspoken understanding of past offenses and insecurities that elevate all of the gorgeousness Norah possesses. But little boys and girls? Teenage boys and girls. They can't understand that hurt today. I am not ready for this.
So while it may not do her any good, we are done. In response to "Daddy do I look pretty today?" my husband responds with "Yes, you are beautiful and your clothes look great, too!" In response to "Mama, do you think I look pretty today?" I respond "Does that dress make you feel pretty?" In response to a screaming, unreasonably terrified little girl there will be no more "Hey you cut that out!" only "Norah, let's be BRAVE!" I am careful to critique my daughters school work without "What a pretty picture!" and with "You worked so carefully! Great concentration, I love the colors you used!"
I refuse. I. RE. FUSE. to raise shallow children.
The hurt *I* felt when that little boy...That little unknowing boy called my three year old daughter "ugly," was only a reflection of the weight I put on outward beauty.
My daughter is gorgeous. She is hilarious. She is bright and brave and strong and witty.
And I want to remember her as those things. On the days that her skin looks normalish. On the days (like today) where her skin is cracked and red and her legs are bleeding and her hives are out of control and the sound of her scratching makes my stomach churn, I want to remember her. No more editing out the "imperfect".
This is my daughter. She is Norah. She is Lovely in so many ways.
*Note from the mama: Norah is suspected to have a mast cell disease of which there is currently no cure for. While her symptoms can be managed with diet, controlled environment, herbal supplements and natural remedies, the nature of her disease leaves her unable to take all pharmaceuticals and even severely limits the holistic approaches we can take. This post is not to discuss her disease and what we have/haven't done for it/her, only a commentary on yet another way it has effected our world. Please be mindful and respectful of this when commenting. Remember, if you can think of a remedy, doctor or "cure" for her in the time it takes you to read this post, we have more than likely tried it out on her in the last three years ;)