I knew it was going to happen, I just wasn’t expecting it to happen when it did. When Maya first spoke about wanting to walk she was three and a half years old. It felt so surreal that for a moment I was waiting for a director to yell, “Cut” so I could quickly run off of the stage. But I was the director and I couldn’t run. Despite successfully traversing many difficult challenges in the past, this exchange stole my breath. It still does a year and half later.
Parents of children with disabilities become adept at thinking on their feet to meet their children’s needs even amidst very challenging circumstances. There are practical puzzles for us to solve such as how to fit into a small bathroom stall with a wheelchair. Then there are social situations to navigate like explaining to one of my child’s peers why she still wears diapers in a way that hopefully leaves Maya’s dignity intact. This, however, was very different. I suddenly found myself choking on my own empathy and grief and unable to quickly find the words I wanted to say to her.
In that fleeting moment many different thoughts and feelings moved through me:
*I was thrilled that my daughter was being so open with her feelings and had the courage to share them.
*I realized her bad mood had less to do with her being stubborn and more to do with her feelings about watching people walk while sitting in her wheelchair.
*I was caught off guard and nervous about responding to her in a helpful way.
*I was facing my own anxiety that I had pushed out of my mind about what kind of mobility she would or would not have in the future.
I was trying to process these issues at lightning speed so that I could respond with enough clarity to quickly take away her pain (and in turn some of my own). I wanted to fix Maya’s feelings about her mobility challenges by providing her with a “perfect” answer. I didn’t want to discourage her and yet I didn’t want to give her false hope that she would potentially feel angry about later. What I painfully faced in that moment was the realization that I didn’t have the power to fix any of it nor did I know the answer to her question.
Two days ago Maya asked the walking question again (and it has come up a few times in between). She is five now and she asked me as casually as if she were asking for more cereal. She was staring at me, analyzing my body language, and waiting for me to respond. Nothing gets by this little girl. What she lacks in physical ability, she makes up for in emotional intelligence and acute observation (one of the benefits of being less mobile than others and having an active mind). She is astute enough to detect a longer than normal pause when someone is answering a question she feels is important. I would get away with nothing.
So, what did I say the first time and what do I say now? I chose then and still choose to answer her honestly. I cannot do it any other way. If I attempt to hide something from her, I know she will call me out on it.
I tell her that I hope that she will walk but I don’t know if she will. Perhaps I should not propose even a remote expectation. Who knows what is right? I go on to tell her that we will support her as far as she can go in her abilities. This is the most honest yet compassionate statement I can offer her. I wish I could offer her more.
With time it has gotten a bit easier to navigate this terrain. I have more awareness about what she needs from me. Initially, I thought because she was so young she wouldn’t be thinking about all of this. However, after the first time she asked me about walking, I realized that she was more in tune with herself and her environment than I gave her credit for, or that I was prepared to face. Now I have developed some ideas about how to answer her and I am becoming more comfortable being in the awkwardness of these exchanges.
Despite these being difficult conversations they offer an immense opportunity for Maya’s emotional growth. We are able to help her understand how she can better cope with her limitations. We help her learn about where her power lies in this struggle; in doing whatever she possibly can for herself. Regardless of what mobility issues Maya may ultimately face, this is a vital piece for her to understand and accept in order for her to successfully participate in this world. At the same time it is during talks like this that I remember to openly acknowledge how hard all of this is for her because I know sometimes she needs to hear it.
We want to help Maya focus on celebrating the goals she has achieved, and will achieve regardless of where she lands. I understand now that in order think about her mobility issues in this way she needs to face her authentic feelings and move through them as they arise. By allowing her to do this we will support her as she navigates her way to a healthy place of acceptance about herself, her life, and her disability.
I know many more tough conversations are ahead. Blake and I may not always have the best answers or the “right” answers, and I certainly wish I could speed dial God sometimes. But as I go further on this journey I learn that our path is less about getting it right, erasing a problem, or filling the space between us with an arsenal of positive outlooks. It is more about being there with Maya and her feelings, asking her about them and having the strength to do it.
Blake and I will sometimes ask each other “How do you think we did?” We can’t be too hard on ourselves. This is tough stuff. This is life, life with our unique little girl, and we are learning as we go.