She is sitting poised and purposefully, leaning forward with intent as she exams the controls on the arm of the junior sized wheelchair. Her blonde hair is pulled into pigtails, a popular hairstyle with the preschool play set and her pink t-shirt is embellished with rhinestones and the title “princess”. And she does, look like a child princess who is perched upon her throne. She looks confident and mischievous, as she listens to instructions from Atalie, her physical therapist. Within minutes her four year old hands grasp the joystick control and she is moving past me down the hallway.
“She can’t walk? “ Why does she need the wheelchair” “How cute she is!” The questions and comments play in my mind as I imagine what strangers will say now, when they see my daughter, Zoe navigating her power wheelchair at the store, the mall or our neighborhood school. I continue the imagined conversation now asking myself “Why are you emotional now, come on... you knew this was coming at some point, didn’t’ you? You know it is a good thing. How much longer can you carry her and her walker when you go places? She looks happy, why are you feeling this way? I feel stunned, raw and hurt and even vulnerable. As if I am learning for the first time about my daughter’s diagnosis.
I called my husband on the way home from the physical therapy appointment, with a naturally easy and honest excitement in my voice; I told him the big news about the power wheelchair experience. Zoe had loved it and was disappointed when she had to climb off the chair and return to her little old lady aluminum walker. She used her walker easily, as she walked within the limited areas of our home, and other outside smaller places. Her strength and stamina were limited in larger environments, so as we explored places like the mall, the grocery store or local library, she was captive in her special stroller, dependent on me to push her in the direction I thought she wanted to go.
He paused for a moment, before he responded to my news. And in that moment, I knew his heart was hurting as he struggled. “Oh, well, we knew it would happen sometime. I just didn’t think… She really liked it?” He was recovering from his own disappointment quickly and within moments his voice was upbeat again. “Bittersweet” I said, “Isn’t it?” The reality was harsh, but the reward of regained independence for Zoe, was very, very sweet.
I struggled to settle my own conflicting feelings. I phoned a friend the next day, and told her the news. Pushing my emotions aside, I touched on the positive aspects, how quickly Zoe learned, how excited she was, how she smiled. I heard my friend’s sharp intake of breath, immediately following my announcement that Zoe would be getting a power wheelchair. There was that pause again, and then an “Oh!” she sounded a little embarrassed by her response. She stammered a bit. “I mean…” This is a friend whose eyes often fill with tears, as she listens to the details of my daughter’s diagnosis. I know how much she cares. “It’s okay, “I assured her. “I understand completely.”