10/23/2012 02:29 pm ET Updated Dec 06, 2017

The Word I'd Rather You Not Use to Describe My Daughter

My daughter Ella is amazing, but something rubs me the wrong way when I hear people refer to her as "sad." Not her personality. Her "condition," as one person put it.

The first time this happened was while we were waiting in line for the Easter Bunny. The three kids in front of us were alternating staring at Ella and her hand and then whispering to each other. Once we were all at the other side choosing our photos, we mentioned to their mother that we saw the kids noticing Ella's hand and that it was totally okay, but that we wanted to her know what happened so that she would have an answer for her kids when they inevitably asked. Turns out, they had already asked -- when they were barely off the bunny's lap. The mother responded and told them that Ella was obviously born that way and there might not be a reason. Good for the mom -- an honest and accurate answer. Her oldest son (maybe around 7) looked at Ella with downed eyes and responded, "That's really sad." And to a kid, I'm sure it is sad. But we told him that she's going to be just fine. She'll learn how to do everything he learned how to do ... just a little differently. And we promised him that it didn't hurt her ... as that seems to be a big worry with kids. At that, he smiled at Ella and I could hear him chattering positively to his mom about the one-handed baby as he walked away.

Kids are awesome. They ask direct questions. They are genuinely curious. They mean no harm (under a certain age). Adults, though ... not so much. They whisper to each other after you walk by, thinking that you don't see them point or hear their hushed words. Even better is when they don't realize that the guy standing right next to them is married to the woman they are whispering about ... the one with the baby with a missing hand strapped in her Bjorn.

This was the case when we went to the grocery store one day. I passed a couple of women (with a baby in their cart) a few times in the store. Once I walked by them, they started talking to each other about the sad, sad baby and how hard it must be for that mother. My husband was standing just a few feet away and heard everything. They walked swiftly in the other direction so he didn't have the opportunity to say anything to them. But I passed them a few aisles later and they were still staring and pointing.

When I have Ella in the Bjorn, her hand can't be more obvious. I play with both of her hands as we walk, assuming that she isn't shoving them in her mouth. Yet they didn't say anything to me. They just kept talking behind my back after I walked by. That alone drove me nuts, but more so when my husband told me what happened a few aisles earlier. (I didn't see them again or else I would definitely have said something.)

No one wants to be pointed at and talked about behind their back. Nor does any parent want that to happen to her children. So why does anyone think it's okay to snicker about my baby? Why would a mother think it's okay to comment on someone else's child? If the same thing had happened to you, would you want me staring at your child? No, you'd want me to show respect and recognize that some babies are just born different from your idea of normal.

Children know to ask a question when something is different and they are curious. They don't make assumptions, but rather seek out the answers. Why can't adults do the same? Most parents in our situation want others to ask questions. To our faces. Never behind our backs.

If you asked the questions, you would walk away with a different mindset. Not one of sadness, but one of hope. One where we can assure you that she is not in pain, has no other issues and will have an awesome life. Because you know what? The last thing I think when I look at Ella is "sad."


Photo Credit: Barb Girard Photography

For the record, here's a snippet of what I think when I look at Ella: Hysterical. Proud. Intense. Beautiful. Wiggly. Curious. Determined. Happy. Loving. Buddha (how could you not with that belly?). Verbal. Inquisitive. Ninja (seriously, you should see some of the left jabs she gets to our windpipes). Cuddly. Giddy. Loved. Seriously, I think I fall more deeply in love with her every single day.