This is not the motherhood I pictured. There. I said it. At least, it’s not the motherhood I daydreamed about when I placed my hands on my smooth, round belly and delighted in the movement stirring inside. I knew I was having the little girl I’d always wanted, and I was thrilled. I pictured delicate ballet slippers (not leg braces), a fancy bicycle with colorful streamers (not a wheelchair), and dress-up tea parties complete with pink frosted confections (not a feeding tube). As a general rule, no one hopes or plans for their child to be born with a disability. After all, when you ask an expectant family whether they want a boy or a girl, their answer is nearly always “We don’t care. We just want a healthy baby!”
So, I suppose I should no longer be surprised when I begin to tell a new acquaintance about McLaine, and a familiar scenario unfolds (after all, before I gave birth to her, I myself would have considered our situation a sad one). They ask questions about her, and because I don’t have typical answers for the “tell me about your kids” niceties, I end up spilling out a sort of litany of her various diagnoses. Detail by detail, their face falls a bit more until they look completely crestfallen. They reach out their hand and place it on mine and say, “I’m so sorry!” in a hushed way that makes me feel as if I’ve actually just disclosed to them that someone close to me has died. I answer, “No. We’re not sad, and you don’t need to feel sorry for us.” They scrunch up their face a bit, give me a small nod, and I know they are thinking that I’m just being polite.
Because of this, I generally hold back on giving out too many details about McLaine when meeting new people. Please don’t get me wrong. I am in no way ashamed of my daughter or any of her disabilities. It’s just that people have no idea how to react, and I have a visceral internal reaction to their pity. I HATE IT. I feel anger bubble up from deep within. For a moment I forget that they haven’t lived our life. They haven’t experienced the soul-changing love that accompanies special needs parenting. They haven’t been witness to the beauty possessed by a child who has to work way too hard for the things most of us take for granted. There is no room for pity—only fierce love and admiration.
Here’s what I want you to take away from our story:
My daughter isn’t pitiful. She’s beautiful. These pictures capture her as I see her, and—in my opinion—as she is. The picture on the right is blurry because I couldn’t contain her. She is so thrilled to finally be walking at age five that I can’t get her to be still. She loves motion—as evidenced by the photo of us swinging. Her head is thrown back in laughter because she is fully enjoying life. You can see the pride on my face in that one, I think. In the bottom photo, we are both smiling, but while my smile is for the camera, hers is one of real joy. She is stubborn, funny, loving, smart, determined, strong, resourceful, and has just a bit of a diva attitude. I will not sugarcoat our life and tell you that it’s without its challenges. However, challenging does not equal pitiful. Challenging means we’ve learned to rise above, to grow through adversity, and to seek out the positive in every situation. So, strangers that I have yet to meet—when I tell you about my daughter (who happens to have a particular set of challenges), don’t tell me you’re sorry. Tell me that my daughter sounds amazing—because she is.