For months my daughter’s physical therapist had encouraged me to have a short answer ready to explain Betty’s condition when the questions came. I thought about it a little, but felt pretty confident in how I could handle the “she has special needs” conversation with a curious onlooker. Plus, our entire community – family, friends, neighbors, strangers – had cradled us so supportingly, it was hard to believe that any hard questions or uncomfortable comments might ever come. But then one day, one did.
The thing that caught me most by surprise was the fact that a three year old was the one who broke me. He came into the room as we got ready to leave a playdate and simply said to his mother, “Mom, Betty looks weird.” From the days when we first started to notice that something wasn’t right, through my daughter’s diagnosis, and now nearly eighteen months later, I had felt and acted uncannily strong. But in an instant that façade collapsed and I immediately felt the need to flee. I shoved our things in a bag as I felt the tears and a thousand different emotions surge to the surface. I knew it was an innocent comment from a curious child simply trying to make sense of his world, but that knowledge didn’t soothe the sting. My friend, embarrassed, apologized for what her young son had said, to which he replied, “No, but Mom. Jack [his older brother] said she does. And I think so too.”
Within a few seconds the metaphorical bough broke and all of that cradling from everyone around us was brought into question. Does everyone think she looks weird? Have they been lying to us when they tell us how cute she is? Is this just a preview to what the rest of her life – our life – will look like? Will she ever even be aware enough to realize people around her are saying hurtful things? I tried to reassure my friend and address the child’s concerns. In a shaky voice, “Yeah, she’s a little different, isn’t she? I guess we all are!” And then I left as quickly as possible so I could cry in the semi-privacy of my car with my two kids in the backseat.
Before I had children, friends who were parents had warned me that when your kids go through tough things you ache right along with them. But what I didn’t realize was that raising my daughter with special needs might mean that I would hurt for her. Betty likely had no idea what had been said. She didn’t feel the sting, the sadness, the hurt. But I did. It’s difficult to carry that and anticipate a lifetime of curious comments that might hurt. And though it’s a sad prospect to face, I have realized that this is a tiny part of her burden that I can carry for her. How many times do we wish we could deal with the challenges of our child’s disease, disorder, disability, or delays instead of them? This is one thing I can do for my daughter, one part of her life I can trade. And I’m more than happy to.
Dear little daughter, I will happily hurt for you. I’ll cheer for you and I’ll pray for you and I’ll believe in you. But I’ll also feel all of the pain that you can’t. And that’s ok. Because I’m your mom and I love you.